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Disability Awareness Training
Virginia Trainer Manual
2018
This program is intended for use by agencies of the State and Local Government within Virginia. Use of
this material for any other purpose is prohibited without the expressed authorization of Niagara
University’s First Responders Disability Awareness Training office.
© Niagara University and Disability Awareness Training 2018
Intellectual/Developmental Disabilites
Table of Contents Contributions
Instructor’s Note
About This Training
Developmental Disabilities (30 minutes)
Intellectual Disabilities (120 minutes)
Autism Spectrum Disorders (120 Minutes)
Tourette Syndrome/OCD (45 minutes)
Person First Language, Communication and Other Topics (15 minutes)
Syndromes (30 minutes)
Epilepsy/Seizure Disorder (30 minutes)
Physical Disabilities (45 minutes)
Disability Awareness Training for Law Enforcement
David V. Whalen Project Director
Dr. Timothy O. Ireland Provost, Niagara University
Cary Newman Program Manager
Janine Hunt-Jackson, PhD, LMSW Project Assistant
Contributions from:
Susan Conners, Tourette Syndrome Association of NYS
Tina Thomas, Alzheimer’s Association – Greater Richmond Chapter
Heather Norton, Virginia Department of Behavioral Health and Developmental Services
Heidi Lawyer, Virginia Board for People with DisabilitiesGary Talley, Virginia Department for the Deaf and Hard of
Hearing
Sheriff Deputy Tim Sutton
Sergeant Keeli Hill, Virginia State PoliceTravis Aikens-GTO Cadets
Opportunities Unlimited of Niagara
Summit Educational Resources
Virginia Department of Aging and Rehabilitation Services
Virginia Department of Criminal Justice Services
Advisory Council
Chief John Askey, Amherst (NY) Police Department Jay Bowers, WNY Developmental Disabilities Services Office
Investigator James Buono, New York State Police Tim Czypranski, Monroe County EMS, NYS EMS Council Chair
Peter Drew, Chief Operating Officer – Opportunities Unlimited of Niagara Bonita Frazer, Erie County Mental Health Emergency Planning Coordinator Nanette Harmon, Deaf Access Services, Niagara University ASL Department
Richard Hermanson, WNY Self Advocacy Association Undersheriff Chuck Holder, Chautauqua County Sheriff’s Department, Past
President Law Enforcement Training Directors Association – NYS Marc Kasprzak, Niagara County (NY) Sheriff’s Office Senior Dispatcher
Jon Kemp, Main-Transit Past Fire Chief, Parent Advocate Claudia Kurjakovic, Independent Living of Niagara County (NY)
Captain Patrick Mann, Buffalo Police Department Renay Moran, Epilepsy Association of WNY
Kevin Niedermaier, Livingston County Emergency Management Director, Livingston County Fire Coordinator, NYS Emergency Management Association
Julie Phillipson, National Federation of the Blind – NYS chapter Michael Reid, Fire Association of the State of New York
Captain Maria Walker, Albany Fire Department Jim Zymanek, Town of Amherst Emergency Manager, NYS Fire Instructor
Video Production Audio Visual Productions
Henrico, Virginia
Full Circle Studios Buffalo, New York
Brian Rock Niagara University
INSTRUCTOR’S NOTE
This working manual was developed with the intent that an individual experienced in training law enforcement and who have some interest and passion in proper response to individuals with disabilities, can accurately and appropriately present on the topic of disability awareness. The content in this manual contains essential and necessary information an officer needs to respond to situations and incidents involving individuals with developmental disabilities. This was developed with direct input from several law enforcement entities and professionals as well as a diverse group of individuals representing the various disabilities. Also providing input were service providers, parent groups, disability advocates, and state offices from Virginia, New York and Missouri.
We made every effort to make this as user-friendly as possible. We understand the challenges of presenting this curriculum with the wide array of information vital to each specific disability and what it takes for you to communicate this effectively.
PRINCIPLES
The content of this training is based upon the following fundamental premises:
• Police officers encounter individuals with disabilities at least 50% of thetime while on active duty.
• Challenging behavior can put Law Enforcement into difficult situations.
• Developmental Disabilities will arguably pose the most challenging to LawEnforcement.
• Individuals with developmental disabilities are victims of crime atleast seven times more than individuals without disabilities.
• Untrained officers are at a higher risk for a negative encounter.• Police officers will, oftentimes, be the first to respond to calls and will be
called upon to address the situation while respecting quality and dignity of life.
Autism Spectrum Disorder can present in many different ways, some that have confused Law Enforcement and put both the individual and the officer in a compromising situation.
•
• Intellectual Disability is one of the leading demographics in law enforcment encounters, to include both victimization and arrest, yet officers are rarely educated in how it presents and the challenges an individual faces.
ABOUT THIS TRAINING
Niagara University has developed this training to provide law enforcement with a complete and comprehensive understanding of how to respond to individuals with intellectual and devlopmental disabilities in everyday, on-the-job circumstances. That said, there is an extensive amount of material that can be provided to address all the subject matter. This program is designed for you to provide the training as a whole or in modules.
Niagara University’s First Responders Disability Awareness Training (NU FRDAT) office provides information, resources and materials that will assist officers in furthering their education on specific disabilities or topics. Part of this outreach includes the disability groups and organizations in your area, allowing training directors and academies an opportunity for a developmental disabilities connections or training. We encourage first responders to contact us for all their questions and concerns relative to disabilities and how best to respond.
Our website is frdat.niagara.edu or we can be reached at 716-286-7355.
This should be considered the preferred training for any matter relative to response to individuals with developmental disabilities in Virginia. While your department may have received training from other sources or professionals from the field of developmental disabilities, the training provided in this manual is intended to cover all areas of need most prevalent in your day-to-day line of duty. Our intent is that your time is used wisely, accurately, and appropriately when learning about this very important, and often overlooked, topic.
This program is funded by the Virginia Department of Criminal Justice Services with support from the Virginia Department of Behavioral Health and Developmental Services and the Virginia Board for People with Disabilities.
OVERALL OBJECTIVES
Present relevant, important information about intellectual/developmental disabilities Address the challenges officers may face when interacting with individuals with developmental disabilitiesProvide ongoing information and resources to law enforcement relative to developmental disabilitiesProvide an understanding of the laws that address proper response to individuals with developmental disabilitiesSensitize and educate officers as to the quality of life issues and overall dignity and respect that can be easily compromised with a lack of proper understanding and response Be aware of and utilize the supports that exist for individuals with developmental disabilities
CO-PRESENTERS
While you are the lead presenter and have been versed in how to deliver this presentation, you may feel more comfortable with individuals who may have the disability, or who are close to it, such as a parent or service provider professional. These individuals may be best utilized for a specific disability or topic area or as an accompanied presenter throughout your session. They should be considered co- presenters as you will maintain the lead. We encourage individuals that have proven to be accomplished in both disability awareness and the specific disability. NU FR DAT will assist in identifying qualified presenters per your interests. For more information, contact our office or visit our website.
PREPARATION FOR TRAINING
While this manual is designed to guide you through the training program, we understand that there is a lot of new and extensive information that can be overwhelming to both the presenter and the audience. This calls for you to prepare so that the information you provide flows, and our intention is that it is user-friendly. We encourage you to use your creativity when it comes to situations you may have encountered in the line of duty or your peers have communicated to you. Also, it is important to read every handout.
HOW TO USE THIS MANUAL
Each section has a lead page that provides you with the introduction to the topic, its objectives, main points, number of pages, videos, handouts, materials to reference, inserts and the expected duration that it would take to conduct it. Also included are the resources that you can provide to interested attendees. These are discipline-specific and consist mainly of statewide agencies, providers, and associations. Attendees could find the regional programs through the statewide site or contact.
Objectives: this will provide you with the areas that will be covered in this section.
Main points: this gives a brief explanation of the section and what is going to be discussed. You can read this to the audience if you so desire.
PowerPoint: each page of the training is broken down in a note page format. It is designed for you to read to the audience or paraphrase. There will be some direction on certain pages that may indicate questions to be asked or feedback to be received. The intent is to make it easy for you to explain the page and its topic without having to memorize extended content. Customizing pages is encouraged, especially if you have experiences that can provide specifics on a particular disability.
Video: if a video is in this section it will be indicated here. This program is designed to have the videos do the teaching. They expose the audience to the disability, give direction on how to respond, and provide candid comments from individuals. There should be extended discussion about each video, and you will see that every point is included on the note page.
Handouts: where appropriate, an additional information sheet(s) is included in the section right after the lead page. PLEASE make a few copies prior to the training to have on hand for those who are interested. Whatever is not taken can be available for the next session.
Insert: some information is provided in the front pocket, this will be indicated when appropriate. They should be shown to the audience and passed around.
Resources: these are discipline-specific and consist mainly of statewide agencies, providers, and associations
BEYOND THIS TRAINING
Niagara University encourages law enforcement personnel to access our website for continued education, review the resource manual and handouts, connect with community resources, and seek out additional training that is specific to each disability or topic area. Any and all questions relative to continuing education are welcome.
Call our office at 716-286-7355 or email us at [email protected].
© Niagara University and Disability Awareness Training 2018
Developmental Disabilities Objectives:
Defining Developmental Disabilities
Main points: Individuals with developmental disabilities will range from mild to profound in their abilities and limitations. Individuals with mild DD will have a higher incidence than the general public to both commit a crime AND be the victim of a crime. They may not be identifiable initially. Individuals who are more involved will not be offenders but may have challenges with self-direction and are more vulnerable to abuse. Many individuals with DD will be active in the community and reside with the general population, however, their vulnerability will expose them.
Powerpoint: 8 Slides
Resources:
National Association of Councils on Developmental Disabilities:www.nacdd.org
National Association of State Directors of Developmental Disabilities Services:www.nasddds.org
Virginia Department of Behavioral Health and Departmental Services (DBHDS):Phone: 804-786-3921: www.dbhds.virginia.gov
Virginia Board for People with Disabilities: Phone: 804-786-0016:www.vaboard.org
Regional Education Assessment Crisis Services Habilitation (REACH): 24/7Referral & Crisis Hotline: 855-897-8278 (See Contact Sheet)
National Center on Criminal Justice & Disability: www.thearc.org/nnjd
• Breakdown of Developmental Disabilities
DevelopmentalVirginia Law Enforcement DAT
CLICK AND READ FIRST POINT
You probably have heard the term developmental disability(DD). We will begin this section by defining it.
First and foremost, DD represents a broad range ofdisabilities. Identifying someone as having a DD, while initiallygiving an indication, does not give any accurate informationabout specifics of the person’s disability.
There are five disability types associated with DD.
Intellectual disability is only one type. While it’s possible thatindividuals with another type of DD will also have anintellectual disability, don’t make the mistake of assuming thatALL individuals have an intellectual disability.
CLICK AND READ REMAINING 7 POINTS
DD generally manifests during gestation or shortly after birth.However, autism is usually identified at age 2-3 years old,
Virginia Law Enforcement DAT
while many children will not have their first seizure until age 10-12 (associated with hormonal changes).
Causes can be genetic such as with Down Syndrome, fromcomplications during pregnancy, or from premature birth.
That said, with many developmental disabilities, we do notknow the exact cause.
For the most part, there will be no cure, however, somesymptoms, such as seizures, may be treated with propermedications. Other symptoms may be treated throughphysical, occupational, speech, or behavior therapy.
Neurological impairments include disabilities alreadyidentified such as Spina Bifida and Tourette syndrome.
Microcephaly and acquired brain injury through fever, falls,traumatic brain injury, & brain bleeds cause intellectualdisabilities as well. This will be addressed further insubsequent slides.
Virginia Law Enforcement DAT
These seven areas where an individual with a developmentaldisability may have challenges, to varying degrees andextents.
CLICK AND READ “SELF-CARE”: personal recognition of theneed for proper and ongoing hygiene
CLICK AND READ “RECEPTIVE AND EXPRESSIVE LANGUAGE”:ability to speak with content and meaning or receive languagewhereby you process it and understand it
CLICK AND READ “LEARNING”: the ability to learn or beeducated
CLICK AND READ “MOBILITY”: to what extent can a personindependently ambulate?
CLICK AND READ “SELF-DIRECTION”: individual understandsself-control and proper behavior in social settings
CLICK AND READ “CAPACITY…”: can live on his/her own withno or minimal assistance?
Virginia Law Enforcement DAT
CLICK AND READ “ECONOMIC…”: can support him/herself?
Many individuals with autism, neurological impairments, andintellectual disability will meet the criteria to receive services.
Some individuals with CP may only have challenges withmobility and self care. Refer back to the CP video.
Although all of these are developmental disabilities, they mustbe understood in the context of how they present and thechallenges each disability may pose.
Virginia Law Enforcement DAT
In order to understand ID, we must first understand cognition.
This slide explains cognition and the characteristics of anindividual with an intellectual disability (formerly known as“mental retardation”).
CLICK AND READ TO “LEARNING”
Programs that work with individuals with ID will have goals toaddress basic living skills such as zipping a coat, using utensils,proper hygiene, toileting skills, and so on.
However, there are individuals having mild ID who need littletraining in these areas beyond what is taught to otherchildren.
CLICK AND READ “PERSONAL CARE”
Individuals may not recognize a need for personal care andtherefore s/he may appear disheveled. Some may have
Virginia Law Enforcement DAT
significant physical limitations and may not be able to perform basic skills such as brushing teeth, showering, or shaving.
These people will need help to perform functions of this kind.Parents, group home staff, and/or personal care aidestypically do this.
CLICK AND READ “COMMUNICATION”
The ability to communicate may be challenged either inspeech or clarity, could struggle in trying to say what theyintend to say, words might not come easily.
CLICK AND READ “SOCIAL SKILLS”
Social skills can be compromised, such as proper conduct in arestaurant or public venue.
Some people have difficulty understanding that there aresocially acceptable voice levels, personal space requirements,or that there are certain words that are not considered politeto use in public.
Some individuals with ID are not able to verbally communicateclearly and may be difficult to understand. Your patience andlistening skills are imperative to getting the information youneed.
Often people with ID lack “filters.” This means that they willsay whatever they think, even if it isn’t socially acceptable.
Making a comment about “that fat lady,” or “look at thatman’s pants, they’re falling off,” or even making a commentabout skin color or someone’s accent is possible.
Virginia Law Enforcement DAT
Cognitive disability is not the same as intellectual disability
Anyone who has learning, reading, memory, processing,impaired judgement, and other related functioning issues dueto a disability can be identified as having a cognitive disability.In essence, cognition impaired due to a disability other thanintellectual disability
Virginia Law Enforcement DAT
You will see this term with frequency within the context ofdevelopmental disabilities
It has a relationship with most developmental disabilities. Asyou hear of how these disabilities present many of these traitswill be evident.
Virginia Law Enforcement DAT
Individuals with cerebral palsy, among many other disabilities,have this
Premature is a leading cause of congenital brain injury
Virginia Law Enforcement DAT
Note both disabilities and medical conditions are listed
Virginia Law Enforcement DAT
Syndromes
Objectives:
Defining Fragile X Syndrome
Defining Fetal Alcohol Syndrome Disorder
Defining Angelman Syndrome
Defining Prader Willi Syndrome
Explanation of how to recognize, identify, approach, interact and respondto individuals.
Main points: Individuals with these various syndromes will range from mild to profound in their abilities and limitations. Depending on the severity of the disability, individuals will interact differently with the people in the community, possibly alarming those who are not familiar with the characteristics. Individuals may not be identifiable initially. Individuals who are more involved will not be offenders but may have challenges with self-direction and are more vulnerable to abuse.
Content:
Power point: 20 pages
Videos:o Morgan Fawcett- Young Man with FASDo Angelman Syndrome Videoo Abbott- Man with Prader Willi
Handouts:
Prader-Willi Syndrome
Angelman Syndrome Fact Sheet
Fragile X Syndrome Fact Sheet
FASD Facts for Justice System
FASD and the Criminal Justice System Fact Sheet
NCCJDF FASD Fact Sheet
Resources:
National Association of Councils on Developmental Disabilities:www.nacdd.org
National Association of State Directors of Developmental Disabilities Services:www.nasddds.org
Virginia Department of Behavioral Health and Departmental Services (DBHDS): Phone: 804-786-3921: www.dbhds.virginia.gov
Virginia Board for People with Disabilities: Phone: 804-786-0016: www.vaboard.org
National Center on Criminal Justice & Disability: www.thearc.org/nnjd
Prader Willi Association of Maryland, Virginia and Washington D.C: Phone: 910-887-8010: Website: https://www.pwsausa.org/maryland-virginia-dc-chapter/
GeneticsHomeReference
Your Guide to UnderstandingGenetic Conditions
Fragile X syndromeFragile X syndrome is a genetic condition that causes a range of developmentalproblems including learning disabilities and cognitive impairment. Usually, males aremore severely affected by this disorder than females.
Affected individuals usually have delayed development of speech and language byage 2. Most males with fragile X syndrome have mild to moderate intellectual disability,while about one-third of affected females are intellectually disabled. Children with fragileX syndrome may also have anxiety and hyperactive behavior such as fidgeting orimpulsive actions. They may have attention deficit disorder (ADD), which includes animpaired ability to maintain attention and difficulty focusing on specific tasks. About one-third of individuals with fragile X syndrome have features of autism spectrum disordersthat affect communication and social interaction. Seizures occur in about 15 percent ofmales and about 5 percent of females with fragile X syndrome.
Most males and about half of females with fragile X syndrome have characteristicphysical features that become more apparent with age. These features include a longand narrow face, large ears, a prominent jaw and forehead, unusually flexible fingers,flat feet, and in males, enlarged testicles (macroorchidism) after puberty.
Frequency
Fragile X syndrome occurs in approximately 1 in 4,000 males and 1 in 8,000 females.
Causes
Mutations in the FMR1 gene cause fragile X syndrome. The FMR1 gene providesinstructions for making a protein called FMRP. This protein helps regulate theproduction of other proteins and plays a role in the development of synapses, which arespecialized connections between nerve cells. Synapses are critical for relaying nerveimpulses.
Nearly all cases of fragile X syndrome are caused by a mutation in which a DNAsegment, known as the CGG triplet repeat, is expanded within the FMR1 gene.Normally, this DNA segment is repeated from 5 to about 40 times. In people withfragile X syndrome, however, the CGG segment is repeated more than 200 times.The abnormally expanded CGG segment turns off (silences) the FMR1 gene, whichprevents the gene from producing FMRP. Loss or a shortage (deficiency) of this proteindisrupts nervous system functions and leads to the signs and symptoms of fragile Xsyndrome.
Males and females with 55 to 200 repeats of the CGG segment are said to have anFMR1 gene premutation. Most people with a premutation are intellectually normal.
In some cases, however, individuals with a premutation have lower than normalamounts of FMRP. As a result, they may have mild versions of the physical featuresseen in fragile X syndrome (such as prominent ears) and may experience emotionalproblems such as anxiety or depression. Some children with a premutation may havelearning disabilities or autistic-like behavior. The premutation is also associated withan increased risk of disorders called fragile X-associated primary ovarian insufficiency(FXPOI) and fragile X-associated tremor/ataxia syndrome (FXTAS).
Inheritance Pattern
Fragile X syndrome is inherited in an X-linked dominant pattern. A condition isconsidered X-linked if the mutated gene that causes the disorder is located on the Xchromosome, one of the two sex chromosomes. (The Y chromosome is the other sexchromosome.) The inheritance is dominant if one copy of the altered gene in eachcell is sufficient to cause the condition. X-linked dominant means that in females (whohave two X chromosomes), a mutation in one of the two copies of a gene in each cellis sufficient to cause the disorder. In males (who have only one X chromosome), amutation in the only copy of a gene in each cell causes the disorder. In most cases,males experience more severe symptoms of the disorder than females.
In women, the FMR1 gene premutation on the X chromosome can expand to morethan 200 CGG repeats in cells that develop into eggs. This means that women withthe premutation have an increased risk of having a child with fragile X syndrome. Bycontrast, the premutation in men does not expand to more than 200 repeats as it ispassed to the next generation. Men pass the premutation only to their daughters. Theirsons receive a Y chromosome, which does not include the FMR1 gene.
Other Names for This Condition
• fra(X) syndrome
• FRAXA syndrome
• FXS
• marker X syndrome
• Martin-Bell syndrome
• X-linked mental retardation and macroorchidism
Diagnosis & Management
Formal Treatment/Management Guidelines
• American College of Medical Genetics and Genomics Practice Guidelinehttp://www.acmg.net/PDFLibrary/Fragile-X-Carrier-Testing.pdf
page 2
Genetic Testing Information
• What is genetic testing?/primer/testing/genetictesting
• Genetic Testing Registry: Fragile X syndromehttps://www.ncbi.nlm.nih.gov/gtr/conditions/C0016667/
Research Studies from ClinicalTrials.gov
• ClinicalTrials.govhttps://clinicaltrials.gov/ct2/results?cond=%22fragile+x+syndrome%22
Other Diagnosis and Management Resources
• GeneReview: FMR1-Related Disordershttps://www.ncbi.nlm.nih.gov/books/NBK1384
• MedlinePlus Encyclopedia: Fragile X syndromehttps://medlineplus.gov/ency/article/001668.htm
Additional Information & Resources
Health Information from MedlinePlus
• Encyclopedia: Fragile X syndromehttps://medlineplus.gov/ency/article/001668.htm
• Health Topic: Fragile X Syndromehttps://medlineplus.gov/fragilexsyndrome.html
Genetic and Rare Diseases Information Center
• Fragile X syndromehttps://rarediseases.info.nih.gov/diseases/6464/fragile-x-syndrome
Additional NIH Resources
• Eunice Kennedy Shriver National Institute of Child Health and HumanDevelopmenthttps://www.nichd.nih.gov/health/topics/fragilex
• Eunice Kennedy Shriver National Institute of Child Health and HumanDevelopment: Primary Ovarian Insufficiencyhttps://www.nichd.nih.gov/health/topics/poi
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Educational Resources
• American College of Medical Genetics and Genomics Practice Guidelinehttp://www.acmg.net/PDFLibrary/Fragile-X-Carrier-Testing.pdf
• Boston Children's Hospitalhttp://www.childrenshospital.org/conditions-and-treatments/conditions/f/fragile-x-syndrome
• Centre for Genetics Education (Australia)http://www.genetics.edu.au/publications-and-resources/facts-sheets/fact-sheet-54-fragile-x-syndrome
• Emory University School of Medicine: Fragile X Premutation--a Cause ofPremature Ovarian Failurehttp://genetics.emory.edu/documents/resources/factsheet46.pdf
• Emory University School of Medicine: Fragile X Syndromehttp://genetics.emory.edu/documents/resources/factsheet47.pdf
• Kennedy Krieger Institutehttps://www.kennedykrieger.org/patient-care/conditions/fragile-x-syndrome
• MalaCards: fragile x syndromehttps://www.malacards.org/card/fragile_x_syndrome
• Orphanet: Fragile X syndromehttps://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=EN&Expert=908
• Your Genes Your Health from Cold Spring Harbor Laboratoryhttp://www.ygyh.org/fragx/whatisit.htm
Patient Support and Advocacy Resources
• FRAXA Research Foundationhttps://www.fraxa.org/
• March of Dimeshttps://www.marchofdimes.org/baby/fragile-x-syndrome.aspx
• National Fragile X Foundationhttps://fragilex.org/
• National Organization for Rare Disorders (NORD)https://rarediseases.org/rare-diseases/fragile-x-syndrome/
Clinical Information from GeneReviews
• FMR1-Related Disordershttps://www.ncbi.nlm.nih.gov/books/NBK1384
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Scientific Articles on PubMed
• PubMedhttps://www.ncbi.nlm.nih.gov/pubmed?term=%28Fragile+X+Syndrome%5BMAJR%5D%29+AND+%28fragile+X+syndrome%5BTI%5D%29+AND+english%5Bla%5D+AND+human%5Bmh%5D+AND+%22last+360+days%22%5Bdp%5D
Catalog of Genes and Diseases from OMIM
• FMR1 GENEhttp://omim.org/entry/309550
Sources for This Summary
• Cornish KM, Turk J, Wilding J, Sudhalter V, Munir F, Kooy F, Hagerman R. Annotation:Deconstructing the attention deficit in fragile X syndrome: a developmental neuropsychologicalapproach. J Child Psychol Psychiatry. 2004 Sep;45(6):1042-53. Review.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/15257661
• Hagerman PJ, Hagerman RJ. The fragile-X premutation: a maturing perspective. Am J Hum Genet.2004 May;74(5):805-16. Epub 2004 Mar 29. Review. Erratum in: Am J Hum Genet. 2004 Aug;75(2):352.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/15052536Free article on PubMed Central: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1181976/
• Hagerman RJ. Lessons from fragile X regarding neurobiology, autism, and neurodegeneration. JDev Behav Pediatr. 2006 Feb;27(1):63-74. Review.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/16511373
• Jacquemont S, Hagerman RJ, Hagerman PJ, Leehey MA. Fragile-X syndrome and fragile X-associated tremor/ataxia syndrome: two faces of FMR1. Lancet Neurol. 2007 Jan;6(1):45-55.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/17166801
• Koukoui SD, Chaudhuri A. Neuroanatomical, molecular genetic, and behavioral correlates of fragileX syndrome. Brain Res Rev. 2007 Jan;53(1):27-38. Epub 2006 Jul 17. Review.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/16844227
• Saul RA, Tarleton JC. FMR1-Related Disorders. 1998 Jun 16 [updated 2012 Apr 26]. In: Pagon RA,Adam MP, Ardinger HH, Wallace SE, Amemiya A, Bean LJH, Bird TD, Ledbetter N, Mefford HC,Smith RJH, Stephens K, editors. GeneReviews® [Internet]. Seattle (WA): University of Washington,Seattle; 1993-2017. Available from http://www.ncbi.nlm.nih.gov/books/NBK1384/Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/20301558
• Sherman S, Pletcher BA, Driscoll DA. Fragile X syndrome: diagnostic and carrier testing. GenetMed. 2005 Oct;7(8):584-7.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/16247297Free article on PubMed Central: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3110946/
• Sullivan SD, Welt C, Sherman S. FMR1 and the continuum of primary ovarian insufficiency. SeminReprod Med. 2011 Jul;29(4):299-307. doi: 10.1055/s-0031-1280915. Epub 2011 Oct 3. Review.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/21969264
• Terracciano A, Chiurazzi P, Neri G. Fragile X syndrome. Am J Med Genet C Semin Med Genet.2005 Aug 15;137C(1):32-7. Review.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/16010677
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• Van Esch H. The Fragile X premutation: new insights and clinical consequences. Eur J Med Genet.2006 Jan-Feb;49(1):1-8. Epub 2005 Dec 5. Review.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/16473304
• Willemsen R, Oostra BA, Bassell GJ, Dictenberg J. The fragile X syndrome: from moleculargenetics to neurobiology. Ment Retard Dev Disabil Res Rev. 2004;10(1):60-7. Review.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/14994290
Reprinted from Genetics Home Reference:https://ghr.nlm.nih.gov/condition/fragile-x-syndrome
Reviewed: April 2012Published: November 7, 2018
Lister Hill National Center for Biomedical CommunicationsU.S. National Library of MedicineNational Institutes of HealthDepartment of Health & Human Services
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GeneticsHomeReference
Your Guide to UnderstandingGenetic Conditions
Angelman syndromeAngelman syndrome is a complex genetic disorder that primarily affects the nervoussystem. Characteristic features of this condition include delayed development,intellectual disability, severe speech impairment, and problems with movement andbalance (ataxia). Most affected children also have recurrent seizures (epilepsy) anda small head size (microcephaly). Delayed development becomes noticeable by theage of 6 to 12 months, and other common signs and symptoms usually appear in earlychildhood.
Children with Angelman syndrome typically have a happy, excitable demeanor withfrequent smiling, laughter, and hand-flapping movements. Hyperactivity, a shortattention span, and a fascination with water are common. Most affected children alsohave difficulty sleeping and need less sleep than usual.
With age, people with Angelman syndrome become less excitable, and the sleepingproblems tend to improve. However, affected individuals continue to have intellectualdisability, severe speech impairment, and seizures throughout their lives. Adults withAngelman syndrome have distinctive facial features that may be described as "coarse."Other common features include unusually fair skin with light-colored hair and anabnormal side-to-side curvature of the spine (scoliosis). The life expectancy of peoplewith this condition appears to be nearly normal.
Frequency
Angelman syndrome affects an estimated 1 in 12,000 to 20,000 people.
Causes
Many of the characteristic features of Angelman syndrome result from the loss offunction of a gene called UBE3A. People normally inherit one copy of the UBE3A genefrom each parent. Both copies of this gene are turned on (active) in many of the body'stissues. In certain areas of the brain, however, only the copy inherited from a person'smother (the maternal copy) is active. This parent-specific gene activation is caused bya phenomenon called genomic imprinting. If the maternal copy of the UBE3A gene islost because of a chromosomal change or a gene mutation, a person will have no activecopies of the gene in some parts of the brain.
Several different genetic mechanisms can inactivate or delete the maternal copy of theUBE3A gene. Most cases of Angelman syndrome (about 70 percent) occur when asegment of the maternal chromosome 15 containing this gene is deleted. In other cases(about 11 percent), Angelman syndrome is caused by a mutation in the maternal copyof the UBE3A gene.
In a small percentage of cases, Angelman syndrome results when a person inheritstwo copies of chromosome 15 from his or her father (paternal copies) instead of onecopy from each parent. This phenomenon is called paternal uniparental disomy.Rarely, Angelman syndrome can also be caused by a chromosomal rearrangementcalled a translocation, or by a mutation or other defect in the region of DNA thatcontrols activation of the UBE3A gene. These genetic changes can abnormally turn off(inactivate) UBE3A or other genes on the maternal copy of chromosome 15.
The causes of Angelman syndrome are unknown in 10 to 15 percent of affectedindividuals. Changes involving other genes or chromosomes may be responsible for thedisorder in these cases.
In some people who have Angelman syndrome, the loss of a gene called OCA2is associated with light-colored hair and fair skin. The OCA2 gene is located onthe segment of chromosome 15 that is often deleted in people with this disorder.However, loss of the OCA2 gene does not cause the other signs and symptoms ofAngelman syndrome. The protein produced from this gene helps determine the coloring(pigmentation) of the skin, hair, and eyes.
Inheritance Pattern
Most cases of Angelman syndrome are not inherited, particularly those caused by adeletion in the maternal chromosome 15 or by paternal uniparental disomy. Thesegenetic changes occur as random events during the formation of reproductive cells(eggs and sperm) or in early embryonic development. Affected people typically have nohistory of the disorder in their family.
Rarely, a genetic change responsible for Angelman syndrome can be inherited. Forexample, it is possible for a mutation in the UBE3A gene or in the nearby region of DNAthat controls gene activation to be passed from one generation to the next.
Other Names for This Condition
• AS
Diagnosis & Management
Genetic Testing Information
• What is genetic testing?/primer/testing/genetictesting
• Genetic Testing Registry: Angelman syndromehttps://www.ncbi.nlm.nih.gov/gtr/conditions/C0162635/
Research Studies from ClinicalTrials.gov
• ClinicalTrials.govhttps://clinicaltrials.gov/ct2/results?cond=%22angelman+syndrome%22
page 2
Other Diagnosis and Management Resources
• GeneReview: Angelman Syndromehttps://www.ncbi.nlm.nih.gov/books/NBK1144
• MedlinePlus Encyclopedia: Speech Disordershttps://medlineplus.gov/ency/article/001430.htm
Additional Information & Resources
Health Information from MedlinePlus
• Encyclopedia: Speech Disordershttps://medlineplus.gov/ency/article/001430.htm
• Health Topic: Developmental Disabilitieshttps://medlineplus.gov/developmentaldisabilities.html
• Health Topic: Movement Disordershttps://medlineplus.gov/movementdisorders.html
Genetic and Rare Diseases Information Center
• Angelman syndromehttps://rarediseases.info.nih.gov/diseases/5810/angelman-syndrome
Additional NIH Resources
• National Institute of Neurological Disorders and Strokehttps://www.ninds.nih.gov/Disorders/All-Disorders/Angelman-Syndrome-Information-Page
Educational Resources
• Boston Children's Hospitalhttp://www.childrenshospital.org/conditions-and-treatments/conditions/a/angelman-syndrome
• MalaCards: angelman syndromehttps://www.malacards.org/card/angelman_syndrome
• Orphanet: Angelman syndromehttps://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=EN&Expert=72
• Swedish Information Center for Rare Diseaseshttp://www.socialstyrelsen.se/rarediseases/angelmansyndrome
Patient Support and Advocacy Resources
• Angelman Syndrome Foundationhttps://www.angelman.org/
• Canadian Angelman Syndrome Societyhttps://www.angelmancanada.org/
page 3
• Foundation for Angelman Syndrome Therapeuticshttps://cureangelman.org/
• National Organization for Rare Disorders (NORD)https://rarediseases.org/rare-diseases/angelman-syndrome/
• Resource list from the University of Kansas Medical Centerhttp://www.kumc.edu/gec/support/angelman.html
Clinical Information from GeneReviews
• Angelman Syndromehttps://www.ncbi.nlm.nih.gov/books/NBK1144
Scientific Articles on PubMed
• PubMedhttps://www.ncbi.nlm.nih.gov/pubmed?term=%28Angelman+Syndrome%5BMAJR%5D%29+AND+%28Angelman+syndrome%5BTIAB%5D%29+AND+english%5Bla%5D+AND+human%5Bmh%5D+AND+%22last+1080+days%22%5Bdp%5D
Catalog of Genes and Diseases from OMIM
• ANGELMAN SYNDROMEhttp://omim.org/entry/105830
Sources for This Summary
• Buiting K. Prader-Willi syndrome and Angelman syndrome. Am J Med Genet C Semin Med Genet.2010 Aug 15;154C(3):365-76. doi: 10.1002/ajmg.c.30273. Review.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/20803659
• Dagli AI, Mueller J, Williams CA. Angelman Syndrome. 1998 Sep 15 [updated 2015 May 14]. In:Pagon RA, Adam MP, Ardinger HH, Wallace SE, Amemiya A, Bean LJH, Bird TD, Ledbetter N,Mefford HC, Smith RJH, Stephens K, editors. GeneReviews® [Internet]. Seattle (WA): University ofWashington, Seattle; 1993-2017. Available from http://www.ncbi.nlm.nih.gov/books/NBK1144/Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/20301323
• Gentile JK, Tan WH, Horowitz LT, Bacino CA, Skinner SA, Barbieri-Welge R, Bauer-Carlin A, Beaudet AL, Bichell TJ, Lee HS, Sahoo T, Waisbren SE, Bird LM, Peters SU. Aneurodevelopmental survey of Angelman syndrome with genotype-phenotype correlations. J DevBehav Pediatr. 2010 Sep;31(7):592-601. doi: 10.1097/DBP.0b013e3181ee408e. Erratum in: J DevBehav Pediatr. 2011 Apr;32(3):267.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/20729760Free article on PubMed Central: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2997715/
• Lalande M, Calciano MA. Molecular epigenetics of Angelman syndrome. Cell Mol Life Sci. 2007Apr;64(7-8):947-60. Review.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/17347796
• Lossie AC, Whitney MM, Amidon D, Dong HJ, Chen P, Theriaque D, Hutson A, Nicholls RD, ZoriRT, Williams CA, Driscoll DJ. Distinct phenotypes distinguish the molecular classes of Angelmansyndrome. J Med Genet. 2001 Dec;38(12):834-45.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/11748306Free article on PubMed Central: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1734773/
page 4
• Pelc K, Cheron G, Dan B. Behavior and neuropsychiatric manifestations in Angelman syndrome.Neuropsychiatr Dis Treat. 2008 Jun;4(3):577-84.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/18830393Free article on PubMed Central: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2526368/
• Tan WH, Bacino CA, Skinner SA, Anselm I, Barbieri-Welge R, Bauer-Carlin A, Beaudet AL, BichellTJ, Gentile JK, Glaze DG, Horowitz LT, Kothare SV, Lee HS, Nespeca MP, Peters SU, SahooT, Sarco D, Waisbren SE, Bird LM. Angelman syndrome: Mutations influence features in earlychildhood. Am J Med Genet A. 2011 Jan;155A(1):81-90. doi: 10.1002/ajmg.a.33775.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/21204213Free article on PubMed Central: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3563320/
• Van Buggenhout G, Fryns JP. Angelman syndrome (AS, MIM 105830). Eur J Hum Genet. 2009Nov;17(11):1367-73. doi: 10.1038/ejhg.2009.67. Epub 2009 May 20. Review.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/19455185Free article on PubMed Central: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2986680/
• Williams CA, Beaudet AL, Clayton-Smith J, Knoll JH, Kyllerman M, Laan LA, Magenis RE, MonclaA, Schinzel AA, Summers JA, Wagstaff J. Angelman syndrome 2005: updated consensus fordiagnostic criteria. Am J Med Genet A. 2006 Mar 1;140(5):413-8.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/16470747
• Williams CA. Neurological aspects of the Angelman syndrome. Brain Dev. 2005 Mar;27(2):88-94.Review.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/15668046
• Williams CA. The behavioral phenotype of the Angelman syndrome. Am J Med Genet C Semin MedGenet. 2010 Nov 15;154C(4):432-7. doi: 10.1002/ajmg.c.30278. Review.Citation on PubMed: https://www.ncbi.nlm.nih.gov/pubmed/20981772
Reprinted from Genetics Home Reference:https://ghr.nlm.nih.gov/condition/angelman-syndrome
Reviewed: May 2015Published: November 7, 2018
Lister Hill National Center for Biomedical CommunicationsU.S. National Library of MedicineNational Institutes of HealthDepartment of Health & Human Services
page 5
FETAL ALCOHOL SPECTRUM DISORDERS (FASDs)
Pathways to Justice™: Get the Facts
FactsFetal Alcohol Spectrum Disorders (FASDs) are a spectrum of conditions that can occur to a fetus when a mother drinks alcohol while she is pregnant. It is life-long condition with no cure. FASDs affect an estimated 40,000 infants each year.1 FASDs include fetal alcohol syndrome (FAS), partial FAS (pFAS), alcohol-related neurodevelopmental disorder (ARND), and alcohol-related birth defects (ARBD).2 FASDs often lead to problems with adaptive functioning—conceptual, practical, and social skills.
FASDs lead to:• Abnormal facial features (may or may not be present—are not
present in people with ARND)
• Brain damage (including central nervous system abnormalities)
• Hyperactivity and behavior problems, including explosive episodes;
• Lack of impulse control and difficulty with judgement and reasoning
• Vulnerability to peer pressure
• Repeating mistakes multiple times due to disabilities3
Criminal Justice Involvement• FASD is a high-risk hidden disability in the criminal justice system
because the associated behaviors are often assumed to be a choice, rather than related to brain damage
• 35% of individuals with FASD have served time in jail or prison4 • 60% of people with FASD have a history of trouble with the law5 • 60% of adolescents with FASD experienced school disruptions6 • The average age at which children with FASD begin having trouble
with the law is 12 years old7 • People with FASD are susceptible to false confessions and may not
understand the consequences of their actions when taking a plea or testifying
• People with FASD experience higher rates of recidivism
IdentificationMost individuals with FASD have IQs in the normal range. They have good expressive language skills, but poor comprehension. They can read, but have trouble writing. They seem to have insights and understanding, but actually have problems with abstract concepts
For more information, visit our website at:www.thearc.org/NCCJD
Contact us:Phone: 202.433.5255 Toll free: 800.433.5255Email: [email protected]
facebook.com/NCCJD
National Center on CriminalJustice & Disability NCCJD™
PEOPLE WITH FASDs IN THE CRIMINAL JUSTICE SYSTEM
60%in trouble with the law
35%in jail
like time and money. Their ability to function in life is well below their IQ. Their emotional level of development is well below their chronological age. They may appear to be smarter than they actually are, and tend to be naïve and gullible.9
Communication Tips• Explain facts in simple, concrete terms, which
may need to be repeated (no sarcasm, figurative language, or abstract terms)
• Provide assistance in carrying out instructions given by the court/judge/officer
• Repeat often—memory loss is a problem for people with FASD
• There may be issues meeting probation requirements
• Be aware of limitations in decision making, planning, and prioritizing
Individual StoryA teen with FASD was arrested at school under the new anti-terrorism law for answering a question on a test. The extra credit question was, “What would you
like to change about the school?” His answer was, “Blow it up.” He was taken to jail immediately. This is a boy whom the school district knows has FASD. The principal told the mother that he has 3 A’s on his report card, so he must know right from wrong.10
RememberPeople with FASDs may have IQs in the normal range, but the brain damage they experience heavily influences their decision making ability and behavior, which creates higher risk for becoming involved in the criminal justice system. It is important to consider their high risk of victimization due to emotional immaturity and social naivety and provide the appropriate protections as needed.
ResourcesNational Organization on Fetal Alcohol Spectrum Disorderwww.nofas.org/criminal-justice
Washington State FASD Legal Issues Resource Centerdepts.washington.edu/fasdwa/Legal.htm
Facial Features8
1 (SAMHSA, 2003) (http://www.nofas.org/wp-content/uploads/2014/08/Fact-sheet-what-everyone-should-know_old_chart-new-chart1.pdf)
2 http://www.niaaa.nih.gov/sites/default/files/ARNDConferenceConsensusState-mentBooklet_Complete.pdf
3 http://fasdcenter.samhsa.gov/documents/WYNK_Criminal_Justice5.pdf 4 (SAMHSA 2007) (http://www.nofas.org/wp-content/uploads/2014/05/Facts-for-
justice-system.pdf) 5 (Streissguth, A.P.; Bookstein, F.L.; Barr, H.M.; et al. 2004. Risk factors for adverse
life outcomes in fetal alcohol syndrome and fetal alcohol effects. Journal of Developmental and Behavioral Pediatrics 25(4):228-238)
6 (Streissguth, A.P.; Bookstein, F.L.; Barr, H.M.; et al. 2004. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Journal of Developmental and Behavioral Pediatrics 25(4):228-238)
7 (Natalie Novick Brown, Anthony P. Wartnik, Paul D. Connor, and Richard S. Adler, A Proposed Model Standard for Forensic Assessment of Fetal Alcohol Spectrum Disorders, 38 J. OF PSYCH. & L. 383, 384 (2010). See more at: http://www.mofas.org/2014/05/fasd-and-the-criminal-justice-system/#sthash.xDbiJulz.dpuf.
8 http://www.nofas.org/wp-content/uploads/2014/05/FASD-identification.pdf 9 (Teresa Kellerman, Fact Sheet for Law Enforcement, no date). See: http://www.
come-over.to/FAS/Court/ 10 http://www.come-over.to/FAS/Court/
Fetal Alcohol Spectrum Disorders (FASDs) Fact Sheet
Copyright © 2015 The Arc of the United States All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods without proper citation or attribution.
This project was supported by Grant No. 2013-MU-MX-K024 awarded by the Bureau of Justice Assistance, a component of the Office of Justice Programs. Point of views or opinions in this document are those of the author and do not necessarily represent the official position or policies of the U.S. Department of Justice.
Signs and Symptoms of FASD Relevant to the Justice System
FASD :
1200 Eton Court, NW, Third Floor ▪ Washington, DC 20007 ▪ (202) 785-4585 ▪ [email protected] ▪ www.nofas.org
National Organization on Fetal Alcohol Syndrome
Educating the public, professionals, and policymakers about alcohol use during pregnancy
What is FASD?
FASD is an umbrella term describing the range of effects
that can occur in an individual prenatally exposed to
alcohol. These effects may include physical, mental,
behavioral, and/or learning disabilities with lifelong
implications. These individuals have a strong tendency to
get into legal trouble- 35% of individuals with FASD have
been in jail or prison at some point. (SAMHSA 2007)
Over 60% of people with FAS over 12 have been
charged with a crime
55% of people with ARND will be confined to a prison,
psychiatric institution, or drug/alcohol treatment center
95% of people with FAS also have a mental illness
Individuals with Fetal Alcohol Spectrum
Disorders, FASD, have trouble with
assessment, judgment, and reasoning.
Many will never socially mature beyond the
level of a 6 year old. This makes it more
difficult for them to make “smart” long-
term goals, and makes them vulnerable
to manipulation and coercion into false
confessions. Many individuals also suffer
from poor memory, misunderstanding
cause and effect, and an inability to
understand and interpret concepts.
These behavioral impairments make people
with FASD more likely to get into trouble
with the law.
People with FASD often repeat the
same mistakes multiple times due to
their disabilities.
It is important to identify these individuals
and support them to improve functioning in
society rather than forcing rehabilitation.
Visit fasdcenter.samhsa.gov for more
information.
The Justice System can help FASD-affected individuals by:
Educating judges, lawyers and parole officers about the
characteristics and behaviors of persons with FASD
Establishing screening, analysis, and treatment procedures
for those with FASD who enter the juvenile justice or adult
criminal justice system
Establishing/utilizing alternative sentencing programs for
persons with FASD who have committed non-violent offenses
Offering referral information for the children of incarcerated
women who may have been prenatally exposed to alcohol.
What the Justice System Should
Know About Affected Individuals
(American Bar Association 2012; SAMHSA 2007)
For more information, visit NOFAS
online!
(SA
MH
SA
2007
)
[T]here is hope. We can change how lawyers, clients, police, judges, probation officers, prison guards, and family members work with FAS clients.
—David Boulding, attorney for clients with an FASD
addressing FASD in the criminal justice system• In2012,theAmericanBarAssociationpassedaresolution
urgingallattorneysandjudgestoreceivetrainingtohelpidentifyandrespondeffectivelytoFASDinthecriminaljusticesystem.
• FASDisarangeofbrainconditionscausedbyprenatalalcoholexposure.
• Asmanyas5,367Minnesotababiesareborneachyearwithprenatalalcoholexposure.[8]
• YoungpeopleaffectedbyFASDareatincreasedriskforinvolvementwiththejuvenilejusticesystem.
$6.0 Billion
the annual cost to the US of Fetal Alcohol Syndrome alone in direct and indirect costs[9]
aboutIndividualswithanFASDareinvolvedwiththecriminaljusticesystematanalarmingrate.YouthandadultswithanFASDhaveaformofbraindamagethatmaymakeitdifficultforthemtostayoutoftroublewiththelaw.Theydonotknowhowtodealwithpolice,attorneys,judges,socialworkers,psychiatrists,correctionsandprobationofficers,andotherstheymayencounter.
MinnesotaOrganizationonFetalAlcoholSyndrome2233UniversityAvenueWest,Suite395,St.Paul,MN55114
(651)[email protected]
FASD by the numbers:• 94%of individuals with an
FASD also have a mental illness.[1]
• 50%of adolescents and adults displayed inappropriate sexual behavior.[2]
• 60% of people with an FASD have a history of trouble with the law.[3]
• 50%of individuals with an FASD have a history of confinement in a jail, prison, residential drug treatment facility, or psychiatric hospital.[4]
• 73-80% of children with full-blown FAS are in foster or adoptive placement.[5]
• FASD is 10-15times more prevalent in the foster care system than in the general population.[6]
• 60%of adolescents with an FASD experienced significant school disruptions. (e.g. dropped out)[7]
fetal alcohol spectrum disorders (FASD) and the criminal justice system factsheet
Ifyouareinterestedinlearningmore,orreceivingtrainingonFASD,contactMOFAS.Toreceiveoursourcesandmoreinformation,visitourwebsiteat:http://www.mofas.org/?p=13975
mofas.orgrevised7/21/2014
“Children with FAS often develop behavior problems that increase their risk of becoming involved with the criminal justice system.” - NIAAA report
issues related to FASD and the criminal justice system• falseconfessions:theyarevulnerabletoconfabulationand
makingfalseconfessions.
• competency:theyouthmaybeunabletounderstandthechargesagainstthemandparticipateintheirowndefense.
• diminishedcapacity:theymayfinditdifficulttodistinguishrightfromwrong,understandconsequencesorformintent.
• decisionstodecline/remand/waive:youtharelikelytobesaferinajuvenilefacilitythananadultprisonduetovulnerabilities.
• sentencing:attorneysmaybesuccessfulinpresentingFASDasamitigatingfactor.Alternative/diversionarysentencingoptionsshouldalsobeexplored.
• treatment:courtorderedtreatmentissometimesthemostappropriateintervention.
12.8the average age children with an FASD begin having trouble with the law[10]
MinnesotaOrganizationonFetalAlcoholSyndrome2233UniversityAvenueWest,Suite395,St.Paul,MN55114
(651)[email protected]
Ifyouareinterestedinlearningmore,orreceivingtrainingonFASD,contactMOFAS.Toreceiveoursourcesandmoreinformation,visitourwebsiteat:http://www.mofas.org/?p=13975
mofas.org
fetal alcohol spectrum disorders (FASD) and the criminal justice system factsheet
reasons individuals with an FASD get in trouble with the lawResearch shows that individuals with an FASD have specific types of brain damage that may cause them to get involved in criminal activity. Youth with an FASD are especially at high risk of getting into trouble with the law.
• Lack of impulse control and trouble thinking of future consequences of current behavior.
• Difficulty planning, connecting cause and effect, empathizing, taking responsibility, delaying gratification or making good judgments.
• Tendency toward explosive episodes.
• Vulnerability to peer pressure (e.g., may commit a crime to please their friends).
revised7/21/2014
PRADER-WILLI SYNDROME FACT SHEET
WHO has Prader-Willi syndrome (PWS)?
Anyone can be born with Prader-Willi syndrome (PWS). Some individuals may have acquired PWS due to brain trauma.
WHAT is Prader-Willi syndrome?
PWS is a complex genetic disorder affecting appetite, growth, metabolism, cognitive function and behavior. It is typically characterized by low muscle tone, short stature, incomplete sexual development, cognitive disabilities, problem behaviors, and the hallmark characteristics—involuntary and uncontrollable chronic feelings of hunger and a slowed metabolism that can lead to excessive eating and life-threatening obesity. Those who have PWS need intervention and strict external controls, including padlocking access to food, to maintain normal weight and to help save their lives.
WHEN does Prader-Willi syndrome occur?
It is estimated that one in 12,000 to 15,000 people has PWS. Although considered a “rare” disorder, PWS is one of the most common conditions seen in genetics clinics and is the most common genetic cause of obesity that has been identified.
WHERE is Prader-Willi syndrome found?
PWS is found in people of both sexes and all races worldwide.
WHY does Prader-Willi syndrome occur?
Most cases of PWS are attributed to a spontaneous genetic error that occurs at or near the time of conception for unknown reasons. In a very small percentage of cases (2 percent or less), a genetic mutation that does not affect the parent is passed on to the child, and in these families more than one child may be affected. A PWS-like disorder can also be acquired after birth if the hypothalamus portion of the brain is damaged through injury or surgery.
HOW does Prader-Willi syndrome work?
Basically, the occurrence of PWS is due to lack of several genes on one of an individual’s two chromosome 15s—the one normally contributed by the father. In the majority of cases, there is a deletion—the critical genes are somehow lost from the chromosome. In most of the remaining cases, the entire chromosome from the father is missing and there are instead two chromosome 15s from the mother (uniparental disomy). The critical paternal genes lacking in people with PWS have a role in the regulation of appetite. This is an area of active research in a number of laboratories around the world, since understanding this defect may be very helpful not only to those with PWS but to understanding obesity in otherwise normal people.
People with PWS have a flaw in the hypothalamus part of their brain, which normally registers feelings of hunger and satiety. While the problem is not yet fully understood, it is apparent that people with this flaw never feel full; they have a continuous urge to eat that they cannot learn to control. To compound this problem, people with PWS need less food than their peers without the syndrome because their bodies have less muscle and tend to burn fewer calories.
WHO to contact for more information:
Contact the Prader-Willi Syndrome Association (USA) (PWSA (USA)) at (800) 926-4797 toll-free in the US or (941) 312-0400 or visit their website at www.pwsausa.org. PWSA (USA), a 501(c)(3) organization, is the only national membership organization that is dedicated to improving the lives of all persons afflicted with Prader-Willi syndrome and supporting them at every stage of life through research, education, support and advocacy. Headquartered in Sarasota, FL, it was formed in 1975 to provide a vehicle of communication for parents, professionals, and other interested citizens. Hospitals, physicians, and parents from all over the world consult with PWSA (USA) with medical emergencies and questions daily.
GA-01A 3/11/06
Prader-Willi Syndrome Association (USA) * 8588 Potter Park Drive, Suite 500 * Sarasota, FL 34238 www.pwsausa.org * [email protected] * (800) 926-4797
Handouts:1. Prader-Willi Syndrome2. Angelman Syndrome Fact Sheet3. Fragile X Syndrome Fact Sheet4. FASD and the Criminal Justice System Fact Sheet5. FASD Facts for Justice System6. NCCJDF FASD Fact Sheet
Virginia Law Enforcement DAT
The purpose of establishing a diagnosis of intellectual disabilityis to determine eligibility for:
Special education servicesHome and community-based waiver servicesSocial Security Administration benefits (SSI)Specific treatment within the criminal justice system(e.g., In 2002, the U.S. Supreme Court ruled in Atkins v.Virginia that executing people with intellectual disabilityviolates the Eighth Amendment’s ban on cruel andunusual punishment)
Virginia Law Enforcement DAT
CLICK AND READ SLIDEAffected individuals usually have delayed development ofspeech and language by age two
Most males with fragile X syndrome have mild to moderateintellectual disability, while about one-third of affected femalesare intellectually disabled
Children with fragile X syndrome may also have anxiety andhyperactive behavior such as fidgeting or impulsive actions.
They may have attention deficit disorder (ADD), which includesan impaired ability to maintain attention and difficulty focusingon specific tasks.
About one-third of individuals with fragile X syndrome have
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features of autism spectrum disorders that affect communication and social interaction.
Seizures occur in about 15 percent of males and about 5percent of females with fragile X syndrome.
Most males and about half of females with fragile X syndromehave characteristic physical features that become moreapparent with age. These features include a long and narrowface, large ears, a prominent jaw and forehead, unusuallyflexible fingers & flat feet
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CLICK AND READ FIRST TWO BULLETSInherited from parents by mutation on X chromosomeMales are more likely to be severely affected than females
CLICK AND READ THIRD BULLETPeople with Fragile X tend to have distinct physical features,including:
Long, narrow facesLarge earsProminent jaw/foreheadExceptionally flexible fingersFlat feet
Cognitive/intellectual/behavioral characteristics include:Delayed speechMild to moderate intellectual disability for most malesand for about one third in femalesAnxiety
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HyperactivityImpulsivityADDHowever, also typically, people with FXS are quite social& friendly and like to help othersWell-developed sense of humorStrong visual & long-term memory
About fifteen percent of males and 5% of females also have seizures
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CLICK AND READ SLIDE
FASD is caused by prenatal exposure to alcohol.
National prevalence rates estimate that children with FASDare diagnosed at a rate of 10 cases per 1,000 births.
Physical effects may include a flat philtrum (the “dip” in mostpeople’s upper lips), very narrow upper lip, unusually smallskull at birth, cleft palate, and a slow growth rate.
However, there may be no physical traits that would identifyFASD.
People with an FASD are vulnerable to a range of difficulties:Failure in schoolSubstance abuseMental health diagnosisInvolvement in the criminal justice system
Virginia Law Enforcement DAT
CLICK AND READ SLIDE
Also Neurobehavioral Disorder with PrenatalAlcohol Exposure (ND-PAE): A child or youth withND-PAE will have problems in three areas:(1) thinking and memory
(2) behavior problems, such as severe tantrums, mood issues (for example, irritability), and difficulty shifting attention from one task to another, and
(3) trouble with day-to-day living, which can include problems with bathing, dressing for the weather, and playing with other children.
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However there are also, “protective factors” that can help reduce the effects of FASDs and help people with these conditions reach their full potential.
Protective factors include:Diagnosis before 6 years of ageLoving, nurturing, and stable homeenvironment during the school yearsAbsence of violenceInvolvement in special education and socialservices
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Next slide will show statistics
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CLICK AND READ EACH POINT ON SLIDE
A person with FASD may have all or only a few of thesesigns/symptoms. They may have easily seen physicalcharacteristics or, as the previous slide mentions, there may beNO obvious signs of FASD.
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CLICK AND READ 5 BULLETS
Individuals with FASD will have brain damage that will make itdifficult to stay out of trouble with the law. Anger issues &outbursts can cause trouble, especially as teen years areentered.
They may have a lack of impulse control and troublerecognizing the consequences of behavior.
Individuals may be vulnerable to peer pressure and maycommit a crime to please friends.
Because individuals with FASD have difficulty establishingrelationships, they may start fires as a way of gettingattention. (https://online.csp.edu/blog/forensic-scholars-today/fetal-alcohol-syndrome-fasd-firesetting )
Alternatively, individuals with FASD can often be manipulated
Virginia Law Enforcement DAT
by peers into either doing something inappropriate or taking the blame for someone else’s actions. This can lead to false confessions and wrongful conviction.
When encountering someone with FASD, it is best toremember that short, clear questions, consistency andpersistence tend to work well
Virginia Law Enforcement DAT
Stress Morgan’s powerful points regarding stigma, hisstrengths and abilities, and not shaming the mothers whodrink.
Virginia Law Enforcement DAT
Recognize:An abnormal appearance, short height, low body weight,small head size, poor coordination, low intelligence, behaviorproblems, and problems with hearing or seeing
Identify:They may communicate it to you. While there are somecharacteristics, they may not stand out as clearly FASD
Approach:once identified, standard approach with an awareness of whattheir challenges are
Interaction:Possible mental health disorders which call for CIT mindset.Be supportive of their needs.Criminal actions will call for standard law enforcement.
Response:Community support services involvement if not already
Virginia Law Enforcement DAT
involved.
Developmental delays, between about 6 and 12 months ofage, are usually the first signs of Angelman syndromeSeizures often begin between the ages of 2 and 3 years oldDisease cannot be curedAngelman syndrome affects an estimated 1 in 12,000 to20,000 peopleChildren typically appear happy and excited, hand flapping.Hyperactive, short attention span, attracted to water (similarto autism). Also have difficulty sleeping and need less sleepAffected individuals continue to have intellectual disability,severe speech impairment, and seizures throughout their livesAdults with Angelman syndrome have distinctive facialfeatures that may be described as "coarse."Other common features include:
Unusually fair skin with light-colored hairAbnormal side-to-side curvature of the spine (scoliosis)
Virginia Law Enforcement DAT
Life expectancy appears to be nearly normal
The video emphasizes the quality life people with AngelmanSyndrome can have.
You also hear about seizures, sensory deficits, and ambulation.This indicates a theme with all the developmental disabilitiesyou will hear about, that being the differing ways each one maypresent.
Virginia Law Enforcement DAT
CLICK AND READ 5 BULLETS
Due to an uncontrollable need to eat, some children will evenraid garbage cans or eat frozen food. This behavior mightresult in a call to LE if an individual is rummaging in aneighbor’s trash.
An individual may become combative, especially when deniedfood; this may also result in call to LE.
Compulsive behavior may be mistaken as a drug (meth)addiction rather than compulsion.
Physical traits may include: narrow forehead, almond-shapedeyes, triangular mouth, short stature, small hands and feet,fair skin and light-colored hair, decayed or otherwise damagedteeth (due to grinding during sleep).
Puberty is delayed or incomplete, therefore someone withthis condition may appear younger than s/he actually is.
Virginia Law Enforcement DAT
Those who have PWS need intervention and strict externalcontrols, sometimes including padlocking access to food, tomaintain normal weight and to help save their lives.
Virginia Law Enforcement DAT
Individuals, if out alone, may be going through garbage cans oreating off tables
Couple with the intellectual disability, responding to an officer’sdirectives may not be understood or may look like non-compliance
It should be understood the individual will be involved in otheraspects of life (i.e. school, recreation programs) and notnecessarily be talking or seeking food every moment.
Virginia Law Enforcement DAT
Recognize:May be going through garbage cans, exposed skin frompicking
Identify:Light, pale skin, skin irritation/bandages, weight
Approach:With an awareness that they are focused on food, be calm
Interaction:There will be mild intellectual disability so expect somedifficulty in understanding your questions or directives.Be patient.
Response:Follow up with caregiver as to their behaviors, not all willpresent the same.Ask what they are doing for prevention, tag the person andmake the PD aware
Virginia Law Enforcement DAT
Intellectual Disability Objectives:
Understanding Intellectual Disability (formerly Mental Retardation), how its diagnosed, and the four levels
How to interact with an individual with an Intellectual Disability (ID)
Defining Down Syndrome
Approach and identification
Service providers and caregiver role
When is it an offense and when is it incompetence? Main points: Individuals with intellectual disabilities will range from mild to profound in their abilities and limitations. Individuals with mild ID will have a higher incidence than the general public to both commit a crime AND be the victim of a crime. They may not be identifiable initially. Individuals who are more involved will not be offenders but may have challenges with self-direction and are more vulnerable to abuse. Many individuals with ID will be active in the community and reside with the general population, however, their vulnerability will expose them. Lying is difficult for individuals with an intellectual disability; most will respond with the truth, as they know it. Content:
Power point: 41 pages
Videos: o Never Again- Ethan Saylor o JF Stevens- Self-Advocate o Virginia-Woman with an intellectual disability o Adam- Man with mild an intellectual disability o Janice-Woman with an intellectual disability o Mike-Man with an Intellectual Disability o Jon- Man with ID o Peter Drew- Service Provider o Tiffany Moore – Court Liaison Community Services for
Developmentally Disabled
Handouts:o Police Officer’s Guide When in Contact With People Who Have
Intellectual Disabilitieso Introduction to Intellectual Disabilitieso Basic Etiquette: Intellectual Disabilitieso Levels of Intellectual and Adaptive Functioningo Intellectual Disability Fact Sheet (CDC)o Down Syndrome Fact Sheeto Down Syndrome Myths & Truthso REACH Information Sheet
Resources:
National Association of Councils on Developmental Disabilities:www.nacdd.org
National Association of State Directors of Developmental Disabilities Services:www.nasddds.org
Virginia Department of Behavioral Health and Departmental Services (DBHDS):Phone: 804-786-3921: www.dbhds.virginia.gov
Virginia Board for People with Disabilities: Phone: 804-786-0016:www.vaboard.org
National Center on Criminal Justice & Disability: www.thearc.org/nnjd
Growth Through Opportunity: Website: www.gtocadets.org
• National Down Syndrome Congress: Website: www.ndsccenter.org
National Down Syndrome Society: Website: www.ndss.org•
A Police Officer’s Guide When in Contact With People Who Have an Intellectual Disability
About 3 out of every 100 people have an intellectual disability, and as a law enforcement officer, there is a
chance you will come in contact with a person who has this disability. Title II of the Americans with
Disabilities Act (ADA) of 1992 prohibits state and local governments from discrimination against an
individual with a disability. Police municipalities, sheriff’s departments, and state patrolmen are covered
under Title II, and are responsible for making sure programs, services, and activities provided by police are
readily accessible to and usable by people who have disabilities. (28 C.F.R§ 35.150 [a]; The Americans
with Disabilities Act Title II Technical Assistance Manual, U.S. Department of Justice)
In October 2010, President Obama signed Rosa’s Law, which eliminated the use of the phrase “mental
retardation” on a federal level. The NYS Education Department has also eliminated the use of this term in
identifying students. Although it is still commonly used, “mental retardation” is no longer acceptable in
identifying individuals. The proper term is “intellectual disability”, a term that has been accepted and used
internationally for years. The United States is the last progressive country in the world to officially drop this
derogatory term and embrace the more appropriate identification of an individual who has cognitive and/or
intellectual challenges.
How do you make sure your activities are readily accessible to people who have an intellectual
disability?
In order to provide readily accessible services, there are some helpful tips and strategies to use whenever
in contact with someone who has an intellectual disability:
1. IDENTIFY
What is intellectual disability?
People with an intellectual disability have difficulty in their ability to learn. The effects of this condition vary
considerably among people, just as the range of abilities varies among those who do not have an
intellectual disability. Many people with an intellectual disability live independently in the community and
may not appear to have a significant disability. However, there are people who are seriously affected and
have difficulty learning skills needed to live independently in the community, such as self-care and
economic self-sufficiency. Whether the individual has a mild or severe disability, all people with an
intellectual disability are covered under the ADA and may need assistance.
Why is intellectual disability sometimes more difficult to detect than other disabilities within
individuals?
The majority of people with an intellectual disability have mild intellectual disabilities which makes it a
difficult disability to identify. Many people with intellectual disabilities want to be thought of as “average.”
They may try to hide their disability in order to be liked or accepted by others, especially authority figures.
What is the difference between an intellectual disability and mental illness?
INTELLECTUAL DISABILITY AND MENTAL ILLNESS ARE NOT THE SAME AND SHOULD NOT BE
TREATED THE SAME
Intellectual disability refers to below average abilities to learn and process information, but mental
illness refers to a person’s thought process, moods, and emotions.
Intellectual disability generally occurs before a person reaches adulthood, but mental illness can
occur at any time in a person’s life and everyone is prone to mental illness.
Intellectual disability refers to below average intellectual functioning, but mental illness has nothing
to do with intelligence. People with mental illness can have below average, average, or above
average intelligence.
How can I tell if someone has an intellectual disability?
There is often no way of knowing if a person has an intellectual disability, but there are traits to look for in
identifying an individual with this disability.
Look for clues in the person’s communication, behavior, and reaction to police contact or
emergency responders.
Communication:
The individual may…
Have limited vocabulary or a speech impairment
Have difficulty understanding or answering questions
Have a short attention span
Behavior:
The individual may…
Act inappropriately with peers or the opposite sex
Be easily influenced by and eager to please others
Be easily frustrated
Have difficulty with the following tasks:
o Giving accurate directions
o Making change
o Using the telephone and phone book
o Telling time easily
o Reading and writing
NOTE: A person exhibiting these traits does not necessarily
mean the person has an intellectual disability. If there is any
question about someone having an intellectual disability,
assume the person does and use the tips in this handout to
ensure that your contact and communication is clear, especially
if the person is read his or her Miranda rights.
Police Contact:
The individual may…
Not want the disability to be noticed
Not understand rights
Not understand commands
Have the tendency to be overwhelmed by police presence
Act very upset at being detained and/or try to run away
Say what he or she thinks others want to hear
Have difficulty describing facts or details of offense
Be the last to leave the scene of a crime, and the first to get caught
Be confused about who is responsible for the crime and “confess” even though innocent
2. SIMPLIFY COMMUNICATION
How do I talk to someone who has an intellectual disability?
There are no hard and fast rules to use when talking to someone with an intellectual disability. The
communication techniques below may be helpful, and can even be used to improve communication with
people who have similar disabilities, such as traumatic brain injuries, learning disabilities, and Alzheimer’s
disease.
Remember:
Speak directly to the person
Keep sentences short
Use simple language, speak slowly and clearly
Ask for concrete descriptions, colors, clothing, etc.
Break complicated series of instructions or information into smaller parts
Whenever possible use pictures, symbols, and actions to help convey meaning
Be Patient:
Take time giving or asking for information
Avoid confusing questions about reasons for behavior
Repeat questions more than once or ask question in a different way
Use firm and calm persistence if the person doesn’t comply or acts aggressive
NOTE: Someone with an intellectual disability may be able to do only one
of the above tasks while others may be able to do all of these tasks.
These are only preliminary questions to check for the presence of a
disability. Answers given by the person should not be used as
incriminating evidence. Assume the person has an intellectual disability if
you notice any behaviors.
When questioning someone with an intellectual disability don’t ask questions in a way to
solicit a certain answer. Don’t ask leading questions.
Phrase questions to avoid “yes” or “no” answers, ask open-ended questions (e.g. “Tell me
what happened.”)
Keep in Mind:
Don’t assume someone with an intellectual disability is totally incapable of understanding
or communicating.
Treat adults as adults; don’t treat adults who have an intellectual disability as children.
When communicating with someone who has an intellectual disability, give him or her the
same respect you would give any person.
3. PROTECT THE INDIVIDUAL’S RIGHTS
Although it’s not an ADA requirement, when a person who is suspected of having an intellectual disability is
questioned or interrogated about involvement in criminal activity, it is a good idea to have a guardian,
lawyer, or support person present to ensure that the individual’s rights are protected.
Do people with an intellectual disability understand the Miranda warnings?
People with an intellectual disability often do not understand the Miranda warnings. In fact,
many individuals with an intellectual disability often answer yes after they are read the Miranda
warnings even when they do not understand their rights. People with an intellectual
disability usually want to please police officers and may appear to incriminate themselves even
when innocent of any crime. They often fake greater competence than they actually possess.
Because this puts people with an intellectual disability at an unfair disadvantage when being
questioned, you should not ask questions about criminal activity until the person’s
lawyer is present.
When reading the Miranda warnings to someone with an intellectual disability, or to others who
may have difficulty understanding, use simple words and modify the warnings to help the
individual understand. It’s important to determine whether the individual genuinely
understands the principles, protections, and concepts within the warnings.
Ask the person to repeat each phrase of the Miranda warnings using his or her own words. If
the person simply repeats the phrase word or word, check for understanding by asking
IMPORTANT NOTE:
Most people who have an intellectual disability do not like
being called “retarded” or even have the word “retardation”
used in reference to their disability. When speaking to the
individual, use the phrase “person with a disability.”
questions that require the individual to use reasoning abilities and think conceptually. For
example, you can say, “tell me what rights are, give me an example of a right you have, tell me
what a lawyer is, how can a lawyer help you, why is a lawyer important, why do you want to
talk to me instead of a lawyer, can you explain to me why you don’t have to talk to me,” etc.
A person with an intellectual disability may be able to recite the entire Miranda warnings, or
even a simplified version, but he or she usually cannot understand its meanings or the
implications of his or her responses.
It’s not an ADA requirement, but you may want to videotape the interview and make sure
questions are asked clearly and distinctly. Use open-ended, non-leading questions. Ask
questions in a straightforward, non-aggressive manner. If you believe the person has an
intellectual disability, let the individual’s attorney know.
4. KNOW THE RESOURCES
Know what options are available for the person with an intellectual disability other than jail,
especially when the individual has not committed a crime. Realize that you are not alone when you
encounter people with an intellectual disability. Once you suspect that someone has an intellectual
disability, contact an agency in the community that can provide advice about how to best handle
the situation.
Know and use alternatives to arrest when arrest is not the best response. For example, arrest is
inappropriate when used to hold an innocent, lost person with an intellectual disability in jail only
because there seems to be no other alternative. Some alternatives to consider include contacting
a parent or guardian, the place of the residence, agencies on developmental disabilities, or an
advisor or expert who is familiar with people who have this disability.
This information was reprinted with the permission from The Arc
(http://www.thearc.org/page.aspx?pid=2445). Some modifications were made to reflect updated
language, improved techniques, or to cover all first responders. For more information about The
Arc’s Nation Center on Criminal Justice and Disability see: http://blog.thearc.org/2013/09/18/arc-
launches-new-national-resource-center-justice-intellectual-developmental-disabilities/. (The website
will launch in January).
Introduction to Intellectual Disabilities
What Is an Intellectual Disability? Intellectual disability is a disability that occurs before age 18. People with
this disability experience significant limitations in two main areas: 1) intellec-
tual functioning and 2) adaptive behavior. These limitations are expressed in
the person’s conceptual, social and practical everyday living skills. A number
of people with intellectual disability are mildly affected, making the disability
difficult to recognize without visual cues. Intellectual disability is diagnosed
through the use of standardized tests of intelligence and adaptive behavior.
Individuals with intellectual disabilities who are provided appropriate personal-
ized supports over a sustained period generally have improved life outcomes
(AAIDD, 2011). In fact, many adults with intellectual disabilities can live inde-
pendent, productive lives in the community with support from family, friends
and agencies like The Arc.
How Many People Have Intellectual Disabilties? An estimated 4.6 million Americans have an intellectual or developmental
disability (Larson, 2000). Prevalence studies may not identify all people with
intellectual disabilities. Many school age children receive a diagnosis of learn-
ing disability, developmental delay, behavior disorder, or autism instead of
intellectual disability.
What Is Intelligence? Intelligence refers to a general mental capability. It involves the ability to rea-
son, plan, solve problems, think abstractly, comprehend complex ideas, learn
quickly, and learn from experience. Intelligence is represented by Intelligent
Quotient (IQ) scores obtained from standardized tests given by trained profes-
sionals. Intellectual disability is generally thought to be present if an individual
has an IQ test score of approximately 70 or below.
The Arc1660 L Street, NWSuite 301Washington, D. C. 20036Phone: 202.534.3700Toll free: 800.433.5255Fax: 202.534.3731www.thearc.org
For more information on this and other topics, visit www.thearc.org
What Is Adaptive Behav-ior? Adaptive behavior is the collec-
tion of conceptual, social and practi-
cal skills that have been learned by
people in order to function in their
everyday lives. Significant limitations
in adaptive behavior impact a per-
son’s daily life and affect his or her
ability to respond to a particular
situation or to the environment.
Standardized testing aims to mea-
sure the following skills:
• Conceptual skills: receptive and
expressive language, reading and
writing, money concepts, self-
direction.
• Social skills: interpersonal,
responsibility, self-esteem, follows
rules, obeys laws, is not gullible,
avoids victimization.
• Practical skills: personal activi-
ties of daily living such as eating,
dressing, mobility and toileting;
instrumental activities of daily liv-
ing such as preparing meals taking
medication, using the telephone,
managing money, using transpor-
tation and doing housekeeping
activities; occupational skills; main-
taining a safe environment.
A significant deficit in one area
impacts individual functioning
enough to constitute a gen-
eral deficit in adaptive behavior
(AAIDD, 2011).
How Does Having a Disability Affect Someone’s Life? The effects of intellectual dis-
abilities vary considerably among
people who have them, just as the
range of abilities varies consider-
ably among all people. Children
may take longer to learn to speak,
walk and take care of their per-
sonal needs, such as dressing or
eating. It may take students with
intellectual disabilities longer to
learn in school. As adults, some
will be able to lead independent
lives in the community without
paid supports, while others will
need significant support through-
out their lives. In fact, a small
percentage of those with intellec-
tual disabilities will have serious,
lifelong limitations in functioning.
However, with early intervention,
appropriate education and sup-
ports as an adult, every person
with an intellectual disability can
lead a satisfying, meaningful life in
the community.
How Can Supports Help? Supports include the resources
and individual strategies necessary
to promote the development, edu-
cation, interests, and well-being
of a person. Supports enhance
individual functioning. Supports
can come from family, friends
and community or from a service
system. Job coaching is one ex-
ample of a support often needed
by a new employee with intellec-
tual disabilities. Supports can be
provided in many settings, and a
“setting” or location by itself is not
a support.
What Is the Definition of Developmental Disabili-ties (DD)? According to the Developmen-
tal Disabilities Act (Pub. L. 106-
402), the term developmental
disability means a severe, chronic
disability that:
1. is attributable to a mental or
physical impairment or a combina-
tion of those impairments;
2. occurs before the individual
reaches age 22;
3. is likely to continue indefinitely;
4. results in substantial functional
limitations in three or more of the
following areas of major life activ-
ity: (i) self care, (ii) receptive and
expressive language, (iii) learning,
(iv) mobility, (v) self-direction, (vi)
capacity for independent living,
and (vii) economic self-sufficiency;
and
5. reflects the individual’s need for
a combination and sequence of
special, interdisciplinary, or ge-
neric services, individualized sup-
ports, or other forms of assistance
that are of lifelong or extended du-
ration and are individually planned
and coordinated.
Before the age of ten, an infant
or child with developmental delays
may be considered to have an in-
tellectual or developmental disabil-
ity if his or her disabilities are likely
to meet the above criteria without
intervention.
How Does the DD Defini-tion Compare with the AAIDD Definition of In-tellectual Disability? The major differences are in
the age of onset, the severity of
limitations, and the fact that the
developmental disability defini-
tion does not refer to an IQ re-
quirement. Many individuals with
intellectual disability will also meet
the definition of developmental
disability. However, it is estimated
that at least half of individuals with
intellectual disability will not meet
the functional limitation require-
ment in the DD definition. The
DD definition requires substantial
functional limitations in three or
more areas of major life activity.
The intellectual disability defini-
tion requires significant limitations
in one area of adaptive behavior.
For more information on this and other topics, visit www.thearc.org
Those with developmental disabili-
ties include individuals with cere-
bral palsy, epilepsy, developmental
delay, autism and autism spectrum
disorders, fetal alcohol spectrum
disorder (or FASD) or any of hun-
dreds of specific syndromes and
neurological conditions that can
result in impairment of general
intellectual functioning or adaptive
behavior similar to that of a person
with intellectual disabilities.
Why Do Some People Still Use the Term “Mental Retardation”? The term “mental retardation”
is an out-dated term that may
offer special protections in some
states, however, with the passage
of Rosa’s Law in 2010, many states
have replaced all terminology from
mental retardation to intellectual
disability. Although some still use
the term “mental retardation” to
be eligible for some services in a
few states, in no case does having
the label guarantee that supports
will be available. The Arc does not
encourage the use of nor promote
the term mental retardation. The
general public, including families,
individuals, funders, administra-
tors, and public policymakers at
local, state and federal levels, are
becoming aware of how offensive
this term is and The Arc is actively
working to make sure the public at
large now use the preferred term
of intellectual or developmental
disability.
References: American Association on Intel-lectual & Developmental Disabilities. (2011). Intellectual Disability: Defini-tion, Classification, and Systems of Supports, 11th Edition. Washington, DC: American Association on Intellec-tual & Developmental Disabilities. Developmental Disabilities Assis-tance and Bill of Rights Act of 2000. PL106-402. http://www.acf.hhs.gov/programs/add/DDACT2.htm Larson, S.L. et al. (2000). Preva-lence of mental retardation and/or developmental disabilities: Analysis of the 1994/1995 NHIS-D. MR/DD Data Brief. Minneapolis, MN: Institute on Community Integration, University of Minnesota.
Revised 3.1.11
Levels of Intellectual and Adaptive Functioning
Disability Awareness for Law Enforcement, Participant’s Manual, Final Version, August 2001 University of Illinois at Chicago, Department of Disability and Human Development
Degree IQ Level
Average = 100 % of ID
Population Observable
Characteristics Functional Skills Community Integration
Mild 50-55 to 70 85% May have no distinctive physical characteristics.
Can acquire academic skills up to a 6th grade level.
Independent in most self-care skills.
May live fairly independently in the community.
May hold jobs.
Some persons may drive cars.
Moderate 35-40 to 50-55 10% May have poor coordination, mobility disability, somewhat limited communication skills, and poor social skills.
Can acquire academic skills up to a 2nd grade level.
Can attend to self-care with minimal to moderate supervision.
Typically live with family or in a supervised group residence.
May work in supported employment or sheltered workshops.
May be able to travel alone to familiar places.
Severe 20-25 to 35-40 3-4% Often have a mobility or other disabilities, and limited communication skills.
May acquire simple counting, familiarity with the alphabet and some reading of survival words.
Able to respond to simple instructions.
Can maintain most self-care tasks, but requires considerable guidance.
Live with family or in a supervised group residence.
Work in sheltered workshops or attend developmental training programs.
Profound <20 or 25 1-2% Often have multiple disabilities, including mobility impairments and little or no verbal communication ability.
May be able to care for some basic needs, but requires constant care and close supervision.
Live with family or in supervised living residence.
Attend developmental training programs.
The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of peoplewith Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the
opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.
For more information on Down syndrome and NDSS, visit www.ndss.org or call 800-221-4602.
• Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additionalgenetic material alters the course of development and causes the characteristics associated with Down syndrome.
• Down syndrome is the most commonly occurring chromosomal condition; one in every 691 babies in the United Statesis born with Down syndrome.
• There are more than 400,000 people living with Down syndrome in the United States.
• Down syndrome occurs in people of all races and economic levels.
• The incidence of births of children with Down syndrome increases with the age of the mother, but due to higher fertilityrates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects,respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of theseconditions are now treatable, so most people with Down syndrome lead healthy lives.
• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes,and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and maypossess these characteristics to different degrees, or not at all.
• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to60 today.
• People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society inmany ways.
• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is notindicative of the many strengths and talents that each individual possesses.
• Quality educational programs, a stimulating home environment, good health care, and positive support from family,friends and the community enable people with Down syndrome to realize their life aspirations and lead fulfilling lives.
Down SyndromeFact Sheet
Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 691 babies in the United States is
born with Down syndrome, approximately 6,000 births per year. Today, there are more than 400,000 people living with
Down syndrome living in the United States.
Myth: People with Down syndrome have severe cognitive delays.
Truth: Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome
fully participate in public and private educational programs. Educators and researchers are still discovering the full educational
potential of people with Down syndrome.
Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational,
vocational, social, and recreational activities of the community. They are integrated into the regular education system and take
part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are
valued members of their families and their communities, contributing to society in a variety of ways.
Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations
directly involved in providing services to families of individuals with Down syndrome. Visit www.ndss.org to find a Down
syndrome group in your area.
Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In
some instances they are integrated into specific courses, while in other situations students are fully included in the regular
classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the
community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in
post-secondary academic and college experiences and, in some cases, receive college degrees.
Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking adults with Down syndrome for a variety of positions. They are being employed in small- and
medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and
entertainment industry, in clerical positions, childcare, the sports field and in the computer industry to name a few.
Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome have meaningful friendships, date, socialize, form ongoing relationships and marry.
Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of
emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.
For more information on Down syndrome and NDSS, visit www.ndss.org or call 800-221-4602.
The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people
with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the
opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.
Down Syndrome
Myths & Truths
Basic Etiquette: People with Intellectual Disabilities
1. People with intellectual disabilities are not "eternal children." Adults with intellectual disabilities
should be treated and spoken to in the same fashion as other adults. Do not "talk down" to a person with
an intellectual disability. Assume that an adult with an intellectual disability has had the same experiences
as any other adult.
2. Like everyone else, people with intellectual disabilities are extremely diverse in their capabilities and
interests. Avoid stereotypes, such as the assumption that all people with intellectual disabilities enjoy
doing jobs that are repetitive, or want to work in fast food restaurants or supermarkets.
3. Many people with intellectual disabilities can read and write. Don't assume that a person with an
intellectual disability lacks academic skills, such as reading, writing, and the ability to do mathematics.
While an individual's disability may significantly impact these areas, many people with intellectual
disabilities have at least some level of these academic skills.
4. Even if people's academic skills are limited, they still have much to share and contribute. A low level
of academic skills does not mean that people don't have valuable ideas and thoughts. Provide
opportunities for people with limited academic skills to contribute verbally, and take what they have to
say seriously. Ensure that people who have difficulties reading or writing have equal access to written
materials (for example, by taping them or having someone review the materials with them orally). Use
pictures or simple photographs to identify rooms, tasks, or directions.
5. Treat the individual as you would anyone else. If engaging in a conversation with someone with an
intellectual disability, bring up the same topics of conversation as you would with anyone else such as
weekend activities, vacation plans, the weather, or recent events.
6. Giving instructions. People with intellectual disabilities can understand directions if you take your time
and are patient. Use clear language that is concise and to the point. When giving instructions, proceed
slowly, and ask the person to summarize the information, to ensure that it has been understood. You may
have to repeat yourself several times in order for the individual to take in all the information. "Walk
through" the steps of a task or project. Let an individual perform each part of the task after you explain it.
7. Don't defer to a staff person or caregiver. When a person with an intellectual disability is accompanied
by another person such as a staff person, caregiver, or family member, don't direct questions and
comments to them. Speak directly to the person with the intellectual disability. Also, don't allow someone
else to speak for the person with a disability.
8. Avoid the term "mental retardation." If you need to speak about a person's disability, people with
intellectual disabilities prefer the term "developmental disability" rather than "mental retardation."
(Intellectual disability is one type of developmental disability.)
Reprinted with permission from the National Center on Workforce and Disability, Institute for Community
Inclusion, University of Massachusetts Boston. Modified to reflect “intellectual disability” as proper terminology.
To note, the term “mental retardation” is no longer accepted in any form of American vernacular.
Responding to a crisis call? Does the person have an intellectual or developmental
disability (including Autism)?
There currently exist regional crisis programs that can support both adults and
children.
They can dispatch trained staff to provide extra support to the individual and
his/her care providers.
They will come to the scene, intervene to calm the person, assist family/care
provider with stabilizing the immediate situation, and answer questions for law
enforcement.
If the individual needs a temporary detention order (TDO), REACH staff will
assist with that process to support the individual.
For Adults, REACH can admit the person to their Crisis Therapeutic House
(CTH) for a period of stabilization.
They can come out and provide training to officers, dispatchers, and other
community members about the program and supports they provide.
WHAT IS REACH?
REACH is a crisis intervention and prevention program designed to serve adults
(age 18 and older) with an intellectual/developmental disabilities (including
autism) who may also have a mental illness or behavioral challenge.
WHAT IS CHILDREN’S CRISIS?
Children’s Crisis Services are available to assist law enforcement when engaging
children under age 18 with an intellectual/developmental disability who may also
have a mental illness or behavioral challenge.
Children’s Crisis Services may be separate from REACH but also operate as
regional programs.
Please see phone listings to network with your local REACH and Children’s Crisis
Services programs to learn more.
VIRGINIA INTELLECTUAL/DEVELOPMENTAL DISABILITIES CRISIS SERVICES
CONTACT NUMBERS
August 2015
CHILDREN’S CRISIS SERVICES
REGION CSB Affiliates 24/7 Crisis Line
I: Children’s Crisis Harrisonburg-Rockingham;
Horizon Behavioral Health;
Northwestern;
Rappahannock Area;
Rappahannock-Rapidan;
Region Ten;
Rockbridge Area.
Call local Emergency
Services number
II: Children’s Crisis Fairfax County CSB 844-627-4747
III: Children’s Crisis New River Valley CSB 855-887-8278
IV: Children’s Crisis Richmond Behavioral Health
Authority
855-282-1006
V: Children’s Crisis Western Tidewater CSB 888-255-2989
ADULT REACH CRISIS SERVICES
REGION CSB Affiliates 24/7 Crisis Line I: REACH (adults) Region Ten CSB 855-917-8278
II: REACH (adults) Fairfax County CSB 855-897-8278
III: REACH (adults) New River Valley CSB 855-887-8278
IV: REACH (adults) Richmond Behavioral Health
Authority
855-282-1006
V: REACH (adults) Hampton Newport News
CSB
855-807-8278
HANDOUTS:1. Police Officer’s Guide When in Contact With People Who
Have Intellectual Disabilities2. Introduction to Intellectual Disabilities3. Basic Etiquette: Intellectual Disabilities4. Levels of Intellectual and Adaptive Functioning5. Intellectual Disability Fact Sheet (CDC)6. Down Syndrome Fact Sheet7. Down Syndrome Myths & Truths8. 10 Facts Law Enforcement Needs to Know9. REACH Information Sheet
Virginia Law Enforcement DAT Intellectual Disabilities
CLICK AND READ SLIDE
This is the definition per the American Association onIntellectual and Developmental Disabilities (AAIDD). (ID is alsoa developmental disability; even though DD is considered tooccur before age 22)
Intelligence refers to general mental capacity. It is determinedby Intelligent Quotient (IQ) scores obtained from standardizedtests. ID is thought to be present if an individual has an IQscore of 70 or below.
Adaptive behavior (includes conceptual, social and practicalskills): receptive and expressive language, reading and writing,money concepts, self-direction.
Social skills: interpersonal, responsibility, self-esteem, is notgullible or naïve, follows rules, obeys laws, avoidsvictimization.
Practical skills: Activities of Daily Living (ADLs) such as eating,dressing, mobility and toileting; Instrumental ADLs (IADLs)such as preparing meals, taking medication, using thetelephone, managing money, using transportation, and
Intellectual DisabilitiesVirginia Law Enforcement DAT
housekeeping, occupational skills, maintaining a safe environment.
Virginia Law Enforcement DAT Intellectual Disabilities
AAIDD’s Diagnostic Adaptive Behavior Scale (DABS) is underdevelopmentProvides a comprehensive standardized assessment of adaptivebehaviorDesigned for use with individuals from 4 to 21 years oldDABS provides precise diagnostic information around the cutoffpoint where an individual is deemed to have “significantlimitations” in adaptive behavior. The presence of suchlimitations is one of the measures of intellectual disability.
DABS measures the three domains mentioned two slidespreviously:
Conceptual skills: literacy; self-direction; and concepts ofnumber, money, and timeSocial skills: interpersonal skills, social responsibility,
Intellectual DisabilitiesVirginia Law Enforcement DAT
self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, following rules, obeying laws, and avoiding being victimized
Problem solving is particularly difficult for someonewith ID
Practical skills: activities of daily living (personal care),occupational skills, use of money, safety, health care,travel/transportation, schedules/routines, and use of thetelephone
Virginia Law Enforcement DAT Intellectual Disabilities
Ability to understand language, or receive it, and expressoneself so it is comprehensible
Ability to read and write and how that affects you in everydaylife
Understanding the value of money will be challenged.Individual could be taken advantage of in exchange of money
Individual may exhibit behaviors that are inappropriate or maycall for law enforcement response. This could include lewd orassaultive behavior
Intellectual DisabilitiesVirginia Law Enforcement DAT
Social skills can define who a person is.
Not having what many would consider proper etiquette andsocial skills can draw attention or even the angst of people inpublic
Consider how these traits come to play in your life.
Intellectual DisabilitiesVirginia Law Enforcement DAT
Activities of Daily Living or ADLs are practical skills that most ofus take for granted
They are everyday functions and skills applied that we utilize tolive on a daily basis.
Individuals with intellectual disability, and some with cognitivedisabilities, will not be able to carry them out
Reflect on being challenged with an of these skills.
Intellectual DisabilitiesVirginia Law Enforcement DAT
Mild to Moderate Intellectual Disability:
Individuals with mild ID are slower in all areas of conceptualdevelopment and social and daily living skills. These individualscan learn practical life skills, which allows them to function inordinary life with minimal levels of support.Individuals with moderate ID can take care of themselves,travel to familiar places in their community, and learn basicskills related to safety and health. Their self-care requiresmoderate support.
Severe Intellectual Disability:
Major delays in development, and individuals often have theability to understand speech but otherwise have limitedcommunication skills.
Intellectual DisabilitiesVirginia Law Enforcement DAT
Despite being able to learn simple daily routines and to engagein simple self-care, individuals with severe ID need supervisionin social settings and often need family care to live in asupervised setting such as a group home.
Profound Intellectual Disability:
These individuals cannot live independently, and they requireclose supervision and help with self-care activities.They have very limited ability to communicate and often havephysical limitations as well.
Virginia Law Enforcement DAT Intellectual Disabilities
These characteristics will vary from individual to individual. It may be obvious in some, while not in others, or may be more pronounced for some.
CLICK AND READ “MAY HAVE DIFFICULTY…”
When asking an individual to state when somethinghappened, he or she might have difficulty giving an accurateanswer – 10 minutes, an hour, earlier today, may not beunderstood.
The individual may not understand the concept of time,however, he/she may still answer the question and seemconfident as to when an incident occurred.
If his/her answer seems to be out of step with what you needto know, try asking, “Did it happen after breakfast?” or asimilar task-oriented question. This may be easier tounderstand.
CLICK AND READ “MAY HAVE SHORT ATTENTION SPAN…”
Intellectual DisabilitiesVirginia Law Enforcement DAT
Some individuals with more pronounced ID may have difficultypaying attention. They may not recognize law enforcement asauthority due to their cognitive limitations.
Someone may be so intellectually compromised that he/shemay not be able to respond to questions or understanddirections.
CLICK AND READ “MAY NOT INDICATE…”
While it may seem like someone is both paying attention andunderstanding your line of questioning, it may very well be,with some individuals, that they do not understand what youare asking.
However, they will not TELL you that they do not understandand will answer your questions with what you may perceive asconfident, truthful responses.
They may also just say “yes” to anything asked, even thoughthey, again, do not understand what you are asking.
CLICK AND READ “OFTEN HAVE A STRONG DESIRE…”
The individual would want you to be pleased with theiranswers. They might enjoy talking to you and find thisinteraction “neat” or “cool.” If so, they may just give theanswer they think you want.
Furthermore, many people with ID also want to do what youexpect; they listen for your tone of voice and words that hintat what you want them to say. Some people even mirror yourmood while trying to come up with “correct” answers toquestions. (corresponds to slide #26 in Goldman’s manual)
Virginia Law Enforcement DAT Intellectual Disabilities
CLICK AND READ “MAY BE DIFFICULT…”
Some individuals with ID are not able to verbally communicateclearly and may be difficult to understand. Your patience andlistening skills are imperative to getting the information youneed.
Virginia Law Enforcement DAT Intellectual Disabilities
CLICK AND READ FIRST BULLET
While some might welcome and enjoy your presence, othersmay find it very disturbing.
Situations that are different and confusing are often upsetting.
Your uniform and badge, the sirens or lights, the number ofpeople present, may trigger behavioral outbursts, fleeing thescene, screaming, or shouting.
In an attempt to reduce stress, someone may confess just toget you to stop questioning them (co-rsp. to slide # 24)
CLICK AND READ SECOND BULLET
Keep directives basic and one at a time. You may need torephrase your question or directive. Even if you must reworda question or statement, you should still explain exactly whyyou are asking questions or what you expect from them. Thiscan help relieve some anxiety. (got this idea from the video“mental retardation” in our video lib)
Intellectual DisabilitiesVirginia Law Enforcement DAT
CLICK AND READ THIRD BULLET
More involved individuals may have no concept that strikingout or public lewdness is inappropriate. For example, a manmight fondle himself because it feels good, but have no ideathat this shouldn’t be done in public spaces.
Consequences for actions like these would land someone injail or court, however, this is not understood. (similar to slide#25)
CLICK AND READ FOURTH BULLET
While people with ID are unable to lie, they very much want tohelp those in command. Furthermore, remember what wasalready said; they may not realize that what they say isinaccurate, or may try to avoid looking incompetent by sayingsomething inaccurate.
S/he might try to change the subject or go off on a tangent.
CLICK AND READ FIFTH BULLET
Some people are unable to grasp a large vocabulary (keep itsimple!) or will not be able to say exactly what they mean. Forinstance, they might not be able to tell you exactly where theinjury is or what occurred with a perpetrator.
S/he may answer very slowly or not respond at all toquestions. (slide #24)
Some individuals may not be able to provide full sentenceanswers or elaborate beyond basic language.
CLICK AND READ LAST BULLET
Many people with ID think very concretely; to ask them
Virginia Law Enforcement DAT Intellectual Disabilities
generalized questions may be confusing. (i.e., “does everybody steal?”) Try to use very specific, literal, questions rather than abstract ones.
Virginia Law Enforcement DAT Intellectual Disabilities
Down syndrome (DS) is one of the most common types ofdevelopmental intellectual disabilities.
CLICK AND READ FIRST BULLET
People with DS have weak muscle tone, especially in the trunkarea.
They are also prone to asthma, have narrow throats, andnarrowed airways.
Weight can be a problem for people with DS, which may leadto a quadruple factor for asphyxiation.
In the rare case when you have to handcuff someone with DS,care should be taken because having them lie on the floor,face down, could easily lead to asphyxiation.
CLICK AND READ SECOND BULLET
They may have holes in the walls of the heart, which canresult in increased blood pressure that may present asdifficulty breathing.
Intellectual DisabilitiesVirginia Law Enforcement DAT
They may have narrow aortas, which will cause a decreasedblood flow to the lungs.
CLICK AND READ THIRD BULLET
Individuals with DS often have loose ligaments holding jointstogether, especially in the hips and knees. Dislocation is adistinct possibility.
The same can be true of the cervical spine – compression ordislocation of these vertebrae lead to paralysis or asphyxia aswell.
CLICK AND READ FOURTH BULLET
As people with DS age, they are significantly likely to developearly-onset dementia.
According to the National Down Syndrome Society, estimatesshow that Alzheimer’s disease affects about 30% of peoplewith Down syndrome in their 50s. By their 60s, this numbercomes closer to 50%.
Symptoms can include irritability and anxiety which may bereflected by lashing out either verbally or physically.
CLICK AND READ LAST BULLET
Surveys suggest that as many as 80% of people with Downsyndrome will have some problem with hearing. This maycomplicate communication. Sacks B, Wood A. Hearingdisorders in children with Down syndrome. Down SyndromeNews and Update. 2003;3(2);38-41.
Virginia Law Enforcement DAT Intellectual Disabilities
CLICK AND READ 6 BULLETS
Head is typically smaller, and round, with a flat section at theback
Eye shape is usually slanted upward at the outside corner andthe inside corner tends to be rounded
Ears are usually small and set low on the side of the head
Often have slightly to significantly flattened noses at thebridge
Hands are typically small and square, with short fingers andonly one long crease across the palm
Frequently shorter than typical people, and because of poorcoordination, find it difficult to exercise, leading to obesity
Tend to have large tongues and small mouths, so speech canbe muffled or garbled and it may be difficult to answer clearly
Intellectual DisabilitiesVirginia Law Enforcement DAT
Stress the comments and actions of Chief Askey, Travis Akins and Undersheriff Filiceti:
Chief has a program where he has people with developmentaldisabilities working in the PD. He also has officers join him tovolunteer in a Challenger Baseball leagueThis is disability awareness on the spot. Exposure to individualswith DD helps POs to better understand how the disabilitypresents while being sensitizedTravis has a more structured program right here in VA. Talk toyour Chief/Sheriff about bringing the program to your PD/SO.Undersheriff Filiceti asks you to take a moment to review thesituation. Your response may need to be altered.
In follow-up to the incident, the three deputies were cleared ofhomicide charges, however, the officers, the cinema, and the
Intellectual DisabilitiesVirginia Law Enforcement DAT
state lost the lawsuit, totaling $1.6M, with $600,000 the responsibility of the deputies
Virginia Law Enforcement DAT Intellectual Disabilities
On January 11, 2013, Ethan went to see the movie Zero DarkThirty at a theater in Frederick, Maryland. He wasaccompanied by his aide. Ethan liked the movie so much, hewanted to stay for a second showing. However, he had nomoney.
Ethan informed the theater manager that he was going to stayfor a second showing and went back to his seat. Shortly after,three off-duty Frederick County sheriff deputies, moonlightingas security, approached Ethan.
Ethan was a “big fan” of law enforcement and would actuallycall 911 so they could pay him a visit. When he saw theofficers approaching, he greeted them with a smile. Thisquickly turned into an encounter when the officers decided tophysically escort him out.
The aide informed them that touching Ethan would escalatethe situation and she was calling his mother to come assist.The officers disregarded her input and proceeded to wrestlehim to the ground.
Intellectual DisabilitiesVirginia Law Enforcement DAT
Ethan’s last words were, “Mommy it hurts.” He was dead tenminutes later caused by positional asphyxia, complicated byhis developmental disability, obesity, atheroscleroticcardiovascular disease and a heart abnormality.
This incident garnered national attention. Despite Ethan’sdeath being ruled a homicide, the three officers escapedcriminal charges; however, there is a civil suit in process.
This case was a motivating factor for a United States Senatehearing, “Law Enforcement Response to Disabled Americans,”held on April 29, 2014.
REFERENCE ETHAN ARTICLE.
Virginia Law Enforcement DAT Intellectual Disabilities
This video displays the competence a person with DownSyndrome has.How many in the audience have testified in front of a SenateCommittee and successfully received funding for a program ofinterest to you?John’s comments about life are referencing the mandatoryabortion of Down Syndrome identified pregnancies in Icelandand Denmark.
Intellectual DisabilitiesVirginia Law Enforcement DAT
CLICK AND READ “USE SIMPLE LANGUAGE…”
When talking to a person you think may have an intellectualdisability, use simple, basic language and words; be direct andconcrete. You may need to repeat yourself, or find anotherway to word your questions.
CLICK AND READ “USE CONCRETE TERMS AND IDEAS”
Some people with ID do not understand slang orcatchphrases; avoid using these. For example, “You’re pullingmy leg.”
CLICK AND READ NEXT 2 BULLETS
You need to ask open-ended questions, for instance, “Whathappened to the window?” as opposed to, “Did you break thiswindow?” You may be inadvertently feeding the person ananswer by the way you phrase your question.
Intellectual DisabilitiesVirginia Law Enforcement DAT
As we stated earlier, individuals will more than likely answer“yes” to a yes/no question. Therefore, avoid asking questionsthat can be answered with a “yes” or “no.”
There was a case in the Buffalo Police Department where anindividual with ID “confessed” to a murder he did not commit.The investigator deduced that he was not the perpetrator andactually figured out who was the true criminal.
CLICK AND READ “PROCEED SLOWLY…”
Take your time, be deliberate, and use praise throughout theconversation. This will develop a comfort level, maybe even arapport, with the person.
Try to interview the perpetrator or victim in a quiet place withfew distractions
Don’t interrupt! Even if you begin to feel impatient at howlong the interview is taking, interrupting to finish someone’ssentence or to ask another question will just confuse or upsetthe individual. S/he might stop speaking or start repeatinghim/herself
CLICK AND READ “AVOID ASKING…”
Simply put, ask one question at a time and give the individualan opportunity to answer. The ability to process may becompromised and it would only be confusing if you were toask too many questions at once.
CLICK AND READ “ASK STEP BY STEP QUESTIONS…”
You will need to establish the timeline in which the eventsoccurred. Have a progression to your questions that is in some
Virginia Law Enforcement DAT Intellectual Disabilities
form of chronological order.
Being arrested, or at the station to give a statement after anincident, is confusing and potentially frightening enough. Ifyou switch topics without warning, rather than tripping upyour victim, you will only add to that confusion.
CLICK LAST BULLET
Do not assume incompetence. Individuals with intellectualdisabilities practice learning information that is basic toensuring their well-being, such as knowing their address, orshowing (non-driver) identification.
Virginia Law Enforcement DAT Intellectual Disabilities
CLICK AND READ FIRST BULLETAsking someone with an intellectual disability why they didsomething will probably not be helpful. S/he may not reallyunderstand their actions so won’t be able to answer. Questionsthat use “if,” such as “If your friend told you to hit somebody,would you do it?” are also counterproductive.
CLICK AND READ SECOND BULLETUsing other tools to help with communication, such as a PECS(picture exchange communications system) book/tablet,checklists, computer generated print-outs of pictures related tocrime (perpetrator) or victimization.
CLICK AND READ THIRD BULLETDepending on the level of disability, there will probably besomeone who will be able to help decipher speech if the IWD
Intellectual DisabilitiesVirginia Law Enforcement DAT
has a speech impairment. Be careful if you decide to take this route if you are interviewing an abuse or neglect victim. The “helping” professional or family member may actually be the abuser.
CLICK AND READ LAST BULLETWhen interviewing someone with an intellectual disability, youwill have to remain patient and may need to repeat yourselfmany times. This is true even if the disability is mild as s/hemay forget easily, intimidate easily, or misunderstand.
Virginia Law Enforcement DAT Intellectual Disabilities
PLAY VIDEO
Ask the audience what they noticed about this interview. Forexample, the conversation never went in-depth.
Virginia understood where she lived, including the fact thather day program was right next door as she indicated bypointing over her shoulder.
Her social skills are evident as she said, “You’re welcome”after she was thanked for her time.
She was somewhat disoriented about what she does – whenasked what she does at home, she stated she “worked.” Whenasked what she did at day program she stated the same.
She does not “work” at either, but she’s uncertain how toexpand on the question. This is an example of the inability toexplain in detail.
Expressive communication is compromised – you would need
Intellectual DisabilitiesVirginia Law Enforcement DAT
to listen carefully, both to understand her speech and meaning.
This person is unlikely to be an offender but is vulnerable toabuse and other injustices, or may have health-related mattersthat may necessitate calling for medical back-up.
Virginia Law Enforcement DAT Intellectual Disabilities
PLAY VIDEO
This is an individual who has mild ID.
You see he has a full-time job that he likes, finds himself veryconfident in his ability to live and work independently.
Note his comment on his competence, referencing the facthe does not need sign (language) and he is “just like you.”Upon initial contact he would not appear to have a disability.
Ask the audience if there is any indication of his disability.Let the trainees ponder this. Possible lack of eye contact andminor delay in response may be indicators.
Intellectual DisabilitiesVirginia Law Enforcement DAT
CLICK AND READ EACH QUESTION/ANSWER
This is an example of what might happen while you question someone you suspect of shoplifting (and may have an intellectual disability). Depending on how, or in what order, you ask a question, you will get mixed or conflicting answers.
The first question tells your suspect how you want him/her to answer: it’s really more of a statement than a question.
The fourth question ends in the phrase, “go to the store.” Because this comes at the end, the person focuses on going to the store and answers accordingly.
The fifth question focuses on staying home, so this is the answer your suspect gives you.
Intellectual DisabilitiesVirginia Law Enforcement DAT
You must be very careful to keep your questions consistent or you may very well get a false confession. (corresponds with G slide #27)
Virginia Law Enforcement DAT Intellectual Disabilities
Here is an example of how some people with ID answerquestions.
Ask if anyone noticed the way Janice often answers a question.She often answers by repeating the last word the interviewersays, then adds to her answer.
Many people with severe ID find it difficult to answerquestions. They “parrot,” or repeat what you say rather thanactually answering. This repetition is called “echolalia;” manypeople with ID or autism spectrum disorder have this speechpattern.
Janice is able to add to her answer, but others may not be ableto do so.
Intellectual DisabilitiesVirginia Law Enforcement DAT
Recount the many examples presented by the Master TrainersWoman who was sexually exploited by bus drivers, man whohad a woman (addicted to crack) residing with him covering allher bills, man who robbed the Sheraton of petty itemsprompted by his father, man who ‘robbed’ a house when‘neighbors’ asked him to help them move, man who ‘admitted’to a murder he did not commitUse examples from your professional experiences
Intellectual DisabilitiesVirginia Law Enforcement DAT
Discuss how this may play out in a routine stop or follow-up toa call.Officers expect the subject, victim, or witness to naturallyrecognize their position of authority based on theuniform/badge.They now have an encounter that is not going according toscriptIntellectual disability is not easily recognizableAnswer questions that indicate a role in the incident when theyhad little or no involvement inNot fleeing, which should be an indicator to an officerConfession when they are not guilty is common. Individual willtell you what they think you want to hear
Intellectual DisabilitiesVirginia Law Enforcement DAT
PLAY VIDEO
Mike is a 54-year-old man who resides in Lackawanna, NY. Hedescribes his apartment complex (supportive apartment),where staff are on site 24/7.
You can see he is capable of doing many things on his own.
His speech is understandable if you listen carefully, but youmay have to ask him to repeat himself.
Mike was excited to be interviewed for this video. As you cansee, he dressed for the occasion. However, as we discussedearlier about personal care, he was a little disheveled.
He is oriented to time and place, can name people in his life,and is active in the community. He is a churchgoer, goes toball games, and plays bingo with friends.
Intellectual DisabilitiesVirginia Law Enforcement DAT
He responds to the question, “What would you want to say topolice officers or firefighters?” by telling of an incident(s)where he is harassed in public by teenagers. It sounds like thishas happened more than once. He’s an easy target that theyknow won’t come back at them.
Note Mike’s concern with the statement that he’s “going tohell.” As we’ve discussed, individuals can be concrete, literalthinkers. He elaborates on his talk with his pastor so as to clearhis conscience about the afterlife.
He mentions the incident at his former residence where hewas slapped by a housemate. Would you consider this anassault? Discuss with audience.
Virginia Law Enforcement DAT Intellectual Disabilities
Individual may not have filters, may say something that wouldbe considered offensive, rude, or direct.May not shake hands with someone, cover their mouth whenthey sneeze, talk loud in an environment where one talkssofter.Many individuals do not know how to lie. If they were caughtcommitting what would be considered a crime, they will betruthful or reply with an incredulous answer. Generally they willrespond, however, some instances it may be inaccurate.Appearance may be disheveled or unkempt. There could bestained or wrinkly clothes, lack of a shower or shave orpersonal care traits.One way to identify is to ask basic current event questions.Some are what street are we on, what is your address, whatday of the week is it, who is the president, what is your date ofbirth, what town are we in
Intellectual DisabilitiesVirginia Law Enforcement DAT
Use plain English or basic language. Many will not have verbalcomprehensive skills although may not state they did notunderstand your question or comment.
Virginia Law Enforcement DAT Intellectual Disabilities
RECOGNIZE a possible disability if someone displays anxiety orappears nervous, such as Jon was here. His tone was low, hisanswers were uncertain.IDENTIFY One way to identify is speech clarity and the ability toanswer questions with detail. Jon shut down when asked whyhe called 911. His guardian pointed out how he was nervouswith your presence.APPROACH with a calm, comforting, non-threatening tone anddemeanor. Many people with ID will find a first responderintimidating and confusing. Individuals in the mild range willknow who firefighters, EMTs, and police officers are but it doesnot mean they grasp what is happening or about to happen.INTERACTION, especially communication, should be ageappropriate and in plain English. They may answer questionsbut it could be inaccurate. They are going to provide someanswer even if do not completely understand the question or
Intellectual DisabilitiesVirginia Law Enforcement DAT
directive.RESPONSE should include the supports if they are identified.Rochelle noted Jon lives on his own but relies on neighbors whocould assist you. Utilize the supports, whoever they may be. Ifthere is a hospital trip, has there been contact made to andsecurement of supports who can provide more insight into theperson. Ask for medical information that may be part of a To-Gokit, especially if they are in a group home or supported livingresidential setting
Ask them what comes to mind when they hear that someone has an intellectual disability?
Virginia Law Enforcement DAT Intellectual Disabilities
CLICK AND READ “FREQUENTLY THE VICTIM”
As we noted in Part 2, the rate of victimization for people withdisabilities is seven times higher than individuals without adisability.
This is especially true for individuals with ID. This will becovered more in-depth in Part 13 – Victimization.
CLICK AND READ “OFFENDERS”
There is also a high incidence of individuals with IDcommitting criminal offenses. This will be most challenging forlaw enforcement in the judicial system.
CLICK AND READ “MORE LIKELY TO BE CAUGHT”
Even though people with ID are the first to try to leave a crimescene, they are the most likely to be caught. This is probablybecause they don’t understand the gravity of their actions andbecause they have less capacity to properly hide from LE
CLICK AND READ “COMMUNITY LIVING”
Many more individuals with disabilities are moving into thecommunity, hoping to have a greater say in their lives. They
Intellectual DisabilitiesVirginia Law Enforcement DAT
may need more assistance than someone without a disability and this calls for better prepared responders to address those needs appropriately.
Most individuals at this level of functioning will have minimalprofessional support and live among the general population.
CLICK AND READ “MILD ID…”
Individuals you are most likely to encounter can functionindependently, or with minimum support, can understandbasic directives or questions, and will be able to communicate.
85% of individuals with ID fall within the mild category. Thesewould be individuals like Adam and Mike.
CLICK AND READ “DOMESTIC ISSUES”
Individuals may be coming from a home environment thatdoes not allow them to develop, may be abusive, or may beconfining.
In some instances, parents keep their adult children in thehome to access government benefits, including monthlychecks.
CLICK AND READ LAST BULLET
Most individuals will have a service provider agency that isfunded by the state and has responsibilities to ensure propercare and treatment. This agency should also be able to assistyou in most matters, or at least provide constructive guidance.
Police departments are encouraged to initiate outreach toservice provider agencies. This will allow for positive workingrelationships and knowledge of individuals, services, and
Virginia Law Enforcement DAT Intellectual Disabilities
operations.
PLAY VIDEO
This clip provides tips to assist you in identifying ID when theneed arises.
Pete mentions that part of his job is to ensure people areincluded and active in the community. Recall our openingdiscussion on inclusion.
He also states how many individuals with ID are in yourcommunity and “you probably don’t even know it.” Thisindicates how the disability is not evident with many peoplewho have it.
First responders should work in collaboration with supportstaff. As Pete states, they are there to help.
Intellectual DisabilitiesVirginia Law Enforcement DAT
Virginia played a major role in the misperception of individuals with developmental disabilities and their role in criminality and the methods to ‘save the nation’.
Intellectual DisabilitiesVirginia Law Enforcement DAT
The fear of promiscuous poor white women led eugenicsreformers to push for additional asylums to housefeebleminded white women.
The terms moron referenced individuals in the mild range of ID,imbecile those in the moderate/sever range, and idiot thosewho would be severe/profound. These terms are consideredderogatory today and should not be said in any setting.
Intellectual DisabilitiesVirginia Law Enforcement DAT
The fear of individuals who were unfit was real. In modernterms, the list included people with intellectual disability,seizure disorder, mental health disorders, alcoholics, and lowincome, uneducated white people
Intellectual DisabilitiesVirginia Law Enforcement DAT
Albert Priddy referred to poor white Virginians as “the shiftless,ignorant, and worthless class of anti-social whites of theSouth”.
Priddy was the Superintendent of the State Colony forEpileptics and Feebleminded in Lynchburg, VA
He helped shape the ultimate test case in Buck Vs Bell, wherebySupreme Court Chief Justice Oliver Wendell Holmes declared“three generations of imbeciles is enough”. Carrie Buck was of‘normal intelligence’, by all accounts.
The effect of Buck vs Bell was to legitimize eugenic sterilizationlaws in the US as a whole.
Stopping short of a full apology in 2001, the Virginia General
Intellectual DisabilitiesVirginia Law Enforcement DAT
Assembly with House Joint Resolution No. 607 expressed “profound regret” for the “incalculable human damage done in the name of eugenics.”
Virginia Law Enforcement DAT Intellectual Disabilities
On August 16, 1996, following a day spent together drinkingalcohol and smoking marijuana, 18-year-old Daryl RenardAtkins and his accomplice, William Jones, walked to a nearbyconvenience store where they abducted Eric Nesbitt, an airmanfrom nearby Langley Air Force Base. Unsatisfied with the $60they found in his wallet, Atkins drove Nesbitt in his own vehicleto a nearby ATM and forced him to withdraw a further $200.Atkins and Jones then drove him to an isolated location, wherethey shot him eight times, killing him.During the penalty phase of the trial, the defense presentedAtkins's school records and the results of an IQ test carried outby clinical psychologist Dr. Evan Nelson and confirmed that hehad an IQ of 59.
Intellectual DisabilitiesVirginia Law Enforcement DAT
CLICK AND READ 4 BULLETS
As you will hear in the next video, some people with ID are“used” by others for criminal activity, because they know theperson has challenges. Some recognition of this is necessaryfor LE to properly respond. That said, crimes are beingcommitted and the officers need to carry out their job.
Many individuals will have no concept of the legal system,including their rights. Those that do understand probably donot have an intellectual disability.
In the case of ID, it is possible that the offender will giveanswers during questioning they believe the officer wants tohear, in order to please. This would include individuals“confessing” to a crime they didn’t commit.
Some individuals do not want to be seen as having a disability,so it’s more acceptable to appear tough or bad, because itmasks their disability.
Intellectual DisabilitiesVirginia Law Enforcement DAT
CLICK AND READ SLIDE
It is important to know that people with ID may notcompletely comprehend the consequences of their actions,their rights, or be able to answer any in-depth questions.
They will be particularly vulnerable to abuse from the generalpopulation in jail, so it is important to watch for this type ofoccurrence or house them in separate quarters.
Intellectual DisabilitiesVirginia Law Enforcement DAT
CLICK AND READ FIRST TWO BULLETS
Individuals with ID/ASD facing the police during arrest will beoverwhelmed by the stress of the situation.Even “high functioning” individuals are unlikely to fullyunderstand the consequences and extent of their actions.Furthermore, these individuals are likely to have been takenadvantage of “friends” or even be victims of a predator.Remember what has already been said about these points.
CLICK AND READ REMAINING BULLETSFor example, it could be said that someone has capacity towork but not to manage his or her financial affairs.
The test to see if someone is competent to stand trial is asfollows:
Intellectual DisabilitiesVirginia Law Enforcement DAT
Does the defendant have sufficient present ability toconsult with a lawyer with a reasonable degree of rationalunderstanding?Does s/he have a rational and factual understanding of theproceedings?Can s/he assist the lawyer in his or her defense?
This can change from point to point, anywhere along the linefrom arrest to sentencing. It is more likely to change if theindividual has “just” a mental illness, rather than if the personhas an ID.
Virginia Law Enforcement DAT Intellectual Disabilities
CLICK AND READ FIRST BULLET
Individuals with ID are less likely to be deemed competent thansomeone with high functioning autism or someone with amental illness.
CLICK AND READ SECOND BULLETIn VA, this time period cannot exceed 30 days for an evaluationof competence.six months in a hospital or other secure place to restorehim/her to competence.If after this time it has been determined that further treatmentmight restore the defendant to competency, s/he may remain for five years from the date of arrest, or for the length of time of the maximum sentence the defendant would have received if he had been tried and found guilty, whichever is sooner.
Intellectual DisabilitiesVirginia Law Enforcement DAT
After this, the charges must be dismissed, unless the defendanthas been charged with a capital crime, in which case there is notime limit.The facilities where defendants are placed include statepsychiatric hospitals, secure ID/DD facilities, or jail.Extremely rare to be allowed to go home, or to community-based program, even if the law allows it.
CLICK AND READ FINAL BULLETThe legal time frame is quite vague in many cases; forindividuals with ID, it is quite unlikely someone will be able tobe judged competent, whereas for those with MI, it is fairlyoften for this to happen.
Virginia Law Enforcement DAT Intellectual Disabilities
CLICK AND READ FIRST BULLETDefendants with IDD are often denied a fair evaluation ofwhether they are entitled to legal protection as having ID/DDon the basis of false stereotypes about what individuals withIDD can and cannot understand or do.
CLICK AND READ SECOND BULLETIndividuals with IDD are significantly more likely to bevictimized (at least two times more likely for violent crimes andfour to ten times for abuse and other crimes)
CLICK AND READ THIRD BULLETTheir cases are rarely investigated or prosecuted because ofdiscrimination, devaluation, prejudice that they are not worthyof protection, and mistaken stereotypes that none can becompetent witnesses. Their victimization comes in many formsincluding violence, oppression, financial exploitation, sexualexploitation, and human trafficking
Intellectual DisabilitiesVirginia Law Enforcement DAT
CLICK AND READ FOURTH BULLETIndividuals with IDD are subject to routine denial ofopportunities for legal redress because of outdated andstereotyped views of their credibility, their competence totestify, or their need for advocacy, supports, andaccommodationsIndividuals with IDD are often denied due process and effective,knowledgeable advocacy and legal representation at each stageof the proceedingsCLICK AND READ FINAL BULLET
Individuals with IDD are subject to abuse and exploitation whenincarcerated and denied either alternatives to incarceration orappropriate habilitation programs that would address theirintellectual disability, and/or behavior, and help them returnsafely to the community. When incarcerated, individuals withIDD often serve extended time because they do not understandor cannot meet steps to reduce time and secure an earlierrelease.
Virginia Law Enforcement DAT Intellectual Disabilities
The individual is manipulated, coerced, misled, confused byeither conventional or inappropriately used investigativetechniques, or desires to please the questioner
Intellectual DisabilitiesVirginia Law Enforcement DAT
READ SLIDE
People with Down Syndrome often experience anxiety,depression and obsessive-compulsive disorder (OCD).(http://www.ndss.org/Resources/Health-Care/Associated-Conditions/Mental-Health-Issues--Down-Syndrome/ )Some types of medication, called neuroleptics, are prescribedfor OCD, however they can cause a condition called TardiveDyskinesia, in which random movements of different muscles inthe tongue, lips or jaw occur.In some cases people may experience movements of the arms,legs, fingers and toes. In severe cases, symptoms can includealmost violent swaying movements of the trunk or hips, ormuscles associated with breathing. These individuals are notdrunk or having a seizure.This condition may be temporary or permanent
Intellectual DisabilitiesVirginia Law Enforcement DAT
This condition is not necessarily indication of mental illness, asthis class of drugs is also used for neurological illnesses, such asHuntington’s Disease and Parkinson’s Disease, or for certaingastrointestinal conditions, such as uncontrolled vomiting ornausea caused by chemotherapy or migraine headaches.Compazine, one of these drugs, is even used to treatuncontrollable hiccups on occasion.People with Autism frequently have comorbid conditions ofanxiety, OCD, &/or ADHD.(https://www.autismspeaks.org/what-autism/treatment/treatment-associated-psychiatric-conditions )Individuals with Fetal Alcohol Spectrum Disorder often haveaddictions themselves, but may also have comorbid conditionsof depression, schizophrenia, bipolar depression, andpersonality disorders.https://www.ncbi.nlm.nih.gov/pubmed/9546004
Virginia Law Enforcement DAT Intellectual Disabilities
PLAY VIDEO
Tiffany discusses her agency and the unique program theyhave working with the court system, to include working withthe local sheriff’s office and city PD.
She notes how many of her clients are used as “pawns” or“scapegoats.” These are individuals who want to fit in and aretaken advantage of by the person who orchestrated the crime,and who is the true offender.
She also talks about how she assists them to navigate thejudicial system and the court ruling.
Intellectual DisabilitiesVirginia Law Enforcement DAT
CLICK AND READ SLIDE
There will be individuals who may try to use their disability toget out of trouble. Allow time for trainees to offer ideas onhow the officer figured out that the boy did not have ID.
The basic questions you need to ask to identify ID relate totime, place, and current events. For example, “How manydays are in a week; month?” “Does someone help you withthings you need to do?” “Do you have a caseworker?” “Whatstreet are we on? Who is the President? Who is the mayor?Where do you live?”
In this case, it was determined he had a learning disabilitywhen we asked what school he was in and he said he receivedspecial education classes. He had an immediate and accurateresponse to all the questions asked. To be clear, he does havea disability, but not one whereby his understanding ofcriminal behavior or intent is compromised.
Intellectual DisabilitiesVirginia Law Enforcement DAT
Recognize:Person maybe disheveledLack of appropriate self-careOut of season clothingMismatched clothingLack of recognition of the full implications of their actions orthe magnitude of the incidentMaybe with a group of other individuals with disabilities
Identify:They will have issues with answering current event questionsInability to answer more involved questionsThey may indicate they live in a “group home” or attend aprogram run by DD service providersAsk for identification
Intellectual DisabilitiesVirginia Law Enforcement DAT
Approach:Be calm, and understandingInteraction:Use plain English; no medical terms or involved termsregarding legal mattersExplain what is happening and what your role in simple termsUtilize caregiver/staffMiranda warning will not be understoodResponse:Be supportiveContact the service provider if they are not with them and ifsituations are on-going/frequent with multiple calls orinteractions.Request and expect to receive medical information
Virginia Law Enforcement DAT Intellectual Disabilities
Discuss the below points regarding the REACH program :They can dispatch trained staff to provide extra support to theindividual and his/her care providers.They will come to the scene, intervene to calm the person,assist family/care provider with stabilizing the immediatesituation, and answer questions for law enforcement.If the individual needs a temporary detention order (TDO),REACH staff will collaborate with emergency services tosupport the individual.For Adults, REACH can admit the person to their CrisisTherapeutic House (CTH) for a period of stabilization.REACH can come out and provide training to officers,dispatchers, and other community members about theprogram and supports they provide.
Virginia Law Enforcement DAT
Autism Spectrum Disorders (ASD)
Objectives:
Defining autism across the spectrum
Identification and response to an individual with ASD
Proper interactions with individuals with ASD
Understanding how challenging behavior presents
Main points: ASD is one of the fastest growing disabilities in America. The way it presents itself can be misinterpreted as inappropriate or criminal behavior. Some individuals with ASD have died due to lack of understanding by the officer as to the individual’s disability. Rarely, are their actions criminal in nature. It is arguably the disability that receives the most media attention, which calls officers into the spotlight.
Content:
PowerPoint: 71 pages
Videos:o Captain Brad Deichler - KCPDo Paula – mother of son with autismo Ellen – mother of daughter with autismo Police Interaction
o Student with Autism Handcuffed
o Arizona Incident Footage
o Philip - young man with Autism
o Diego- young man with Autism
o Arizona Incident-Actual Footage
Handouts:o 10 Things Every Child with Autism Wishes You Knewo Commonwealth Autism: Wandering & Elopemento Meet the Police: A Guide to Introducing Children & Adults with ASD to
Local Law Enforcemento Autism: Information for Law Enforcement and Other First Responders
Inserts:o “On the Scene and Informed: First Response and Autism” pamphlet
o Disability Identification Sheet
Resources:
National Autism Association: Phone: 877-622-2884: Website:www.nationalautismassociation.org:
Autistic Self Advocacy Network: Website: www.autisticadvocacy.org
Autism Society: Phone: 1-800-328-8476: Website: www.autism-society.org:
Autism Speaks: Phone: 212-252-8584: Website: www.autismspeaks.org:
Aware Collaboration: National Autism Association specific to wandering:http://awaare.nationalautismassociation.org/
Commonwealth Autism: Phone: 804-355-0300:Website: http://autismva.org/
VCU Autism Center for Excellence: Phone: 855-711-6987: Website:http://www.vcuautismcenter.org/
1
Ten Things Every Child with Autism Wishes You Knew
by Ellen Notbohm
from the book Ten Things Every Child with Autism Wishes You Knew, 2nd
edition
Bronze Medal in Psychology, ForeWord Book of the Year Awards
Reprinted in its entirety with permission of author
ome days it seems the only predictable thing about it is the unpredictability. The only
consistent attribute—the inconsistency. Autism can be baffling, even to those who spend
their lives around it. The child who lives with autism may look “normal” but his behavior
can be perplexing and downright difficult.
Autism was once labeled an “incurable disorder,” but that notion has crumbled in the face
knowledge and understanding that increase even as you read this. Every day, individuals with
autism show us that they can overcome, compensate for and otherwise manage many of autism’s
most challenging characteristics. Equipping those around our children with simple understanding
of autism’s basic elements has a tremendous impact on their ability to journey towards
productive, independent adulthood.
Autism is a complex disorder but for purposes of this article, we can distill its myriad
characteristics into four fundamental areas: sensory processing challenges, speech/language
delays and impairments, the elusive social interaction skills and whole child/self-esteem issues.
And though these four elements may be common to many children, keep front-of-mind the fact
that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be
completely alike. Every child will be at a different point on the spectrum. And, just as
importantly, every parent, teacher and caregiver will be at a different point on the spectrum.
Child or adult, each will have a unique set of needs.
Here are ten things every child with autism wishes you knew:
1. I am a child. My autism is part of who I am, not all of who I am. Are you just one thing, or are you a person
with thoughts, feelings, preferences, ideas, talents, and dreams? Are you fat (overweight),
myopic (wear glasses) or klutzy (uncoordinated)? Those may be things that I see first when I
meet you, but you’re more than just that, aren’t you?
S
2
As an adult, you have control over how you define yourself. If you want to single out one
characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet
know what I may be capable of. If you think of me as just one thing, you run the danger of
setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do
it,” my natural response will be, why try?
2. My senses are out of sync. This means that ordinary sights, sounds, smells, tastes, and touches that you may not even notice
can be downright painful for me. My environment often feels hostile. I may appear withdrawn or
belligerent or mean to you, but I’m just trying to defend myself. Here’s why a simple trip to the
grocery store may be agonizing for me.
My hearing may be hyperacute. Dozens of people jabber at once. The loudspeaker booms
today’s special. Music blares from the sound system. Registers beep and cough, a coffee grinder
chugs. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My
brain can’t filter all the input and I’m in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy
standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in
line ahead of us has a poopy diaper, they’re mopping up pickles on aisle three with ammonia. I
feel like throwing up.
And there’s so much hitting my eyes! The fluorescent light is not only too bright, it flickers. The
space seems to be moving; the pulsating light bounces off everything and distorts what I am
seeing. There are too many items for me to be able to focus (my brain may compensate with
tunnel vision), swirling fans on the ceiling, so many bodies in constant motion. All this affects
how I feel just standing there, and now I can’t even tell where my body is in space.
3. Distinguish between won’t (I choose not to) and can’t (I am not able to). It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me
from across the room, I hear “*&^%$#@, Jordan. #$%^*&^%$&*.” Instead, come over to me,
get my attention, and speak in plain words: “Jordan, put your book in your desk. It’s time to go
to lunch.” This tells me what you want me to do and what is going to happen next. Now it’s
much easier for me to comply.
4. I’m a concrete thinker. I interpret language literally. You confuse me by saying, “Hold your horses, cowboy!” when what you mean is, “Stop
running.” Don’t tell me something is “a piece of cake” when there’s no dessert in sight and what
you mean is, “This will be easy for you to do.” When you say, “It’s pouring cats and dogs,” I see
pets coming out of a pitcher. Tell me, “It’s raining hard.”
Idioms, puns, nuances, inferences, metaphors, allusions, and sarcasm are lost on me.
5. Listen to all the ways I’m trying to communicate. It’s hard for me to tell you what I need when I don’t have a way to describe my feelings. I may
be hungry, frustrated, frightened, or confused but right now I can’t find those words. Be alert for
3
body language, withdrawal, agitation or other signs that tell you something is wrong. They’re
there.
Or, you may hear me compensate for not having all the words I need by sounding like a little
professor or movie star, rattling off words or whole scripts well beyond my developmental age.
I’ve memorized these messages from the world around me because I know I am expected to
speak when spoken to. They may come from books, television, or the speech of other people.
Grown-ups call it echolalia. I may not understand the context or the terminology I’m using. I just
know that it gets me off the hook for coming up with a reply.
6. Picture this! I’m visually oriented. Show me how to do something rather than just telling me. And be prepared to show me many
times. Lots of patient practice helps me learn.
Visual supports help me move through my day. They relieve me of the stress of having to
remember what comes next, make for smooth transition between activities, and help me manage
my time and meet your expectations.
I need to see something to learn it, because spoken words are like steam to me; they evaporate in
an instant, before I have a chance to make sense of them. I don’t have instant-processing skills.
Instructions and information presented to me visually can stay in front of me for as long as I
need, and will be just the same when I come back to them later. Without this, I live the constant
frustration of knowing that I’m missing big blocks of information and expectations, and am
helpless to do anything about it.
7. Focus and build on what I can do rather than what I can’t do. Like any person, I can’t learn in an environment where I’m constantly made to feel that I’m not
good enough and that I need fixing. I avoid trying anything new when I’m sure all I’ll get is
criticism, no matter how “constructive” you think you’re being. Look for my strengths and you
will find them. There is more than one right way to do most things.
8. Help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but it may be that I
simply do not know how to start a conversation or join their play. Teach me how to play with
others. Encourage other children to invite me to play along. I might be delighted to be included.
I do best in structured play activities that have a clear beginning and end. I don’t know how to
read facial expressions, body language, or the emotions of others. Coach me. If I laugh when
Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know what to say. Talk to
me about Emily’s feelings and teach me to ask, “Are you okay?”
9. Identify what triggers my meltdowns. Meltdowns and blow-ups are more horrid for me than they are for you. They occur because one
or more of my senses has gone into overload, or because I’ve been pushed past the limit of my
social abilities. If you can figure out why my meltdowns occur, they can be prevented. Keep a
log noting times, settings, people, and activities. A pattern may emerge.
4
Remember that everything I do is a form of communication. It tells you, when my words cannot,
how I’m reacting to what is happening around me.
My behavior may have a physical cause. Food allergies and sensitivities sleep problems and
gastrointestinal problems can all affect my behavior. Look for signs, because I may not be able to
tell you about these things.
10. Love me unconditionally. Throw away thoughts like, “If you would just—” and “Why can’t you—?” You didn’t fulfill
every expectation your parents had for you and you wouldn’t like being constantly reminded of
it. I didn’t choose to have autism. Remember that it’s happening to me, not you. Without your
support, my chances of growing up to be successful and independent are slim. With your support
and guidance, the possibilities are broader than you might think.
Three words we both need to live by: Patience. Patience. Patience.
View my autism as a different ability rather than a disability. Look past what you may see as
limitations and see my strengths. I may not be good at eye contact or conversation, but have you
noticed that I don’t lie, cheat at games, or pass judgment on other people?
I rely on you. All that I might become won’t happen without you as my foundation. Be my
advocate, be my guide, love me for who I am, and we’ll see how far I can go.
© 2012 Ellen Notbohm
Contact the author for permission to reproduce in any way, including posting on the
Internet.
Award-winning author and mother of sons with ADHD and autism, Ellen Notbohm’s
books and articles have informed and delighted millions in more than twenty
languages. Her work has won a Silver Medal in the Independent Publishers Book Awards, a ForeWord Book of Year Bronze medal, Honorable Mention and two
finalist designations, two Mom’s Choice Gold Awards, Learning magazine's
Teacher's Choice Award, two iParenting Media awards, and an Eric Hoffer Book Award finalist designation. She is a contributor to numerous publications, classrooms,
conferences and websites worldwide. To contact Ellen or explore her work, please
visit www.ellennotbohm.com.
Autism INFORMATION FOR LAW ENFORCEMENT AND OTHER FIRST RESPONDERS
POLICE OFFICERS AND OTHER FIRST RESPONDERS MAY ENCOUNTER OR BE ASKED TO PROVIDE SERVICES TO A PERSON WITH AUTISM SPECTRUM DISORDER. RECOGNIZING THE SIGNS OF AUTISM AND KNOWING EFFECTIVE WAYS TO APPROACH A PERSON ON THE AUTISM SPECTRUM CAN MINIMIZE SITUATIONS OF RISK OR VICTIMIZATION OF THE INDIVIDUAL, AS WELL AS THE RISK TO THOSE INTERVENING.
Individuals with autism spectrum disorder (ASD) have diffi culty picking up social
cues (social referencing) and understanding other individual’s thoughts and
intentions, making them vulnerable to a range of crimes, from fraud and theft to
more violent crimes. Individuals with ASD are also generally taught compliance
from a very young age, making them easy targets for abuse and victimization.
When assisting a crime victim who is on the autism spectrum, fi rst responders
should take specifi c actions to communicate with and support the individual.
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CONTRIBUTED BY:Carolyn Gammicchia and Catriona Johnson, M.S.
What is autism?Autism is a spectrum disorder that affects every individual to a
differing degree. Autism is a complex developmental disability. It
is a neurological condition with a variety of symptoms that affect
individuals in different ways. It knows no racial, ethnic or social
boundaries. People with autism may have difficulties in communication
and social understanding. They may also have unusual reactions to
sensory input, and may demonstrate what appear to be inappropriate
behaviors. Autism spectrum disorders (ASD) are now known to be
more common than previously thought, affecting as many as 1.5
million individuals nationwide.
Considerations for PoliCe and other first resPondersThere will be many situations in which a person on the autism
spectrum may encounter police. A survey of individuals with ASD
and their families indicated that 35% of individuals with autism had
been the victim of a crime and that 23% have had interactions with
first responders due to wandering or eloping (Autism Society, 2006).
When responding to situations involving individuals with ASD,
officersshould take into consideration that individuals with disabilities
are often taught compliance – values and beliefs that affect behavior
and social etiquette that may make them more vulnerable to
victimization. Individuals on the autism spectrum may:
• Not question “rules” or those in charge
• Not be assertive
• Agree with adults or authority figures out of necessity
• Always honor other people’s opinions or their personal choices may not be honored by others
• Be taught to be obedient and dependent
Due to the nature of autism and the social environments in which
individuals with ASD may live, the risk for victimization and abuse
is heightened by:
• The individual’s reduced privacy
• �Lack of teaching regarding healthy sexuality and decision-making
• Reduced expectations by caregivers and others
• �Rewards provided for obedience and passivity
• Limited friendships and increased social isolation
• Negative attitudes toward those with disabilities
First responders should also be aware that autism is a spectrum disorder
that affects every individual to a differing degree. Individuals may be
highly verbal or nonverbal, have above-average intelligence or cognitive
limitations (intellectual disability), and may respond differently to
sensory stimuli. During instances of heightened anxiety or when they
do not know what is expected of them, individuals with ASD may also
lose some of their abilities more readily. Providing reassurance will
assist in alleviating the individual’s anxiety and discomfort.
Success in providing services is more likely when a first responder
assisting a person with ASD has information regarding the individual’s
regular behavior and communication patterns. First responders should
have basic knowledge of how to meet the individual’s needs and, if
additional assistance is necessary, collaborate with a professional
familiar with autism. For officers conducting initial investigative
interviews, it will be essential to be comfortable with the individual.
If there is doubt as to the abilities of an interviewer, seeking out a
Forensic Interviewer with knowledge of autism will aid dramatically
in the development of a case for prosecution. Individuals with ASD
often seek “sameness” or consistency; therefore, if initial contacts with
first responders are negative, the investigation could be prolonged.
Knowledge of the individual’s method of communication is vital,
thus the interviewer should have resources available for working
with an interpreter or facilitator. It is estimated that 30% to 50%
of individuals with autism are nonverbal and even those who are
verbal may process and communicate information in different ways.
Individuals with ASD may have immediate or delayed echolalia (the
repetition or echoing of verbal utterances made by another person).
Immediate echolalia may be used with no intent or purpose or may
have a very specific purpose for the individual. Delayed echolalia
appears to tap into long-term auditory memory, can involve the
recitation of entire scripts, and can also have both noncommunicative
and communicative functions. Knowing the individual well is a key
to understanding his or her specific use of echolalia and other
communication traits. Ensuring the interview setting is private and
lacks distractions is also essential. All parties involved should be
aware that interviews of crime victims on the autism spectrum will
take more time. Within the courtroom setting there will be time
needed to prepare an individual to participate in the process of a
trial. Assisting the individual with ASD to become familiar with the
setting, the concepts involved, and expectations will allow them to
participate more effectively. It is also very important that if a person
with ASD is a victim of a crime, they be reassured that they will be
safe in the presence of the perpetrator. At the end of prosecution,
no matter the outcome, an explanation will be required to allow
for closure.
aPProPriate resPonse/delivery of serviCeA lack of personal familiarity with individuals who have a disability may
cause first responders to feel professionally awkward and uncertain
when providing emergency care and assistance. Common reactions
first resPonders should have basiC
knoWledge of hoW to meet the
individual’s needs and, if additional
assistanCe is neCessary, Collaborate With
a Professional familiar With autism.
to individuals with disabilities include fear, embarrassment, or pity
and, unfortunately, too often disbelief, disregard, or discounting of
information supplied by the individual.
Awareness and education of first responders about disabilities
increases their ability to provide appropriate response. Recognizing
behaviors associated with autism will allow you to best respond
to the situation. A person on the autism spectrum may:
1. not respond to a uniform, badge, or other emergency response symbols. Autism may limit a person’s ability to recognize and differentiate uniforms and other common symbols. Pointing out these items to allow the person to focus is helpful.
2. avoid eye contact. People with ASD often have difficulty making eye contact. Do not insist on eye contact or misinterpret lack of eye contact as disrespect or guilt.
3. make repetitive motions or sounds. Repeated movements or sounds may be a signal of distress but may also be the person’s means of securing comfort. Unless the person is causing injury or damaging property, do not stop these behaviors.
4. become upset when touched. Avoid touching if possible. If you have to have physical contact with the individual, explain in simple terms what you are going to do and why. Try saying, “I want to help you, but I (explain what you intend to do).”
5. not provide i.d. when asked. Be patient and speak slowly and calmly. Keep questions simple and allow time for answers. Repeat or rephrase. The person may not be able to speak. Check for ID jewelry, an ID card, or ID sewn into the individual’s clothing.
6. lack awareness of danger. Gently persuade or remove the person from the dangerous situation. Offer an alternative to the dangerous action. Be aware that if the person is anxious there is a risk they could bolt without warning.
7. Continue to do something after being told to stop. Demonstrative, non-threatening gestures may communicate more effectively than a verbal command. Demonstrate what you want the person to do. Repeat the behaviors and instructions. Use a communication board if possible and allow time for processing of information before responses are given.
8. appear to be under the influence of alcohol or drugs. The actions of people with ASD can appear to be odd or inappropriate. When asked about drug use, the person may admit to having taken drugs if they take prescribed medications. Avoid making assumptions about alcohol or drug use.
9. become self-injurious. Under stress an individual may become self-injurious. Use the least invasive technique possible to ensure the individual’s safety.
10. become aggressive. Restraints should only be used if the individual’s or other’s safety is at risk. Individuals with ASD may have a poorly developed upper trunk area. Positional asphyxia could occur so it is critical to ensure that a prone position is not used and the person is moved to a secure and quiet place away from distractions. Deescalation techniques to calm or distract the individual are safer and more effective.
CharaCteristiCs of autismPersons on the autism spectrum may act in any of the following
ways in an encounter with police offficers and other first responders.
Care should be taken not to misinterpret some of these actions
as deliberate, disrespectful or hostile. Persons with ASD may:
• Not recognize a first responder vehicle, badge, or uniform
• Not understand what is expected of them
• Not respond to commands
• Run or move away when approached
• Be unable to communicate with words
• Only repeat what is said to them
• Communicate only with sign language, pictures or gestures
• Avoid eye contact
• Appear argumentative or stubborn
• Say “No!” or “Yes!” in response to all questions
• Have difficulty judging personal space
• Try to avoid sensory input (e.g., flashing lights, sirens, crowds) due to hypersensitivity
• Have a decreased cognitive ability when experiencing heightened anxiety or frustration
• Become anxious or agitated, producing fight or flight responses or behaviors such as screaming, hand flapping, or self-injurious behaviors
• Appear to be under the influence of narcotics or intoxicants
• Have an associated medical condition such as seizure disorder
• Be fixated on a particular object or topic, and may ask repeated questions
• Speak in a monotone voice with unusual pronunciations
• Reverse pronouns (“Can I stop?” instead of “Can you stop?”)
• Give misleading statements or false confessions
• Have problems speaking at the correct volume
• May, if verbal, be honest to the point of bluntness or rudeness
• Not acknowledge physical pain or trauma due to hyposensitivity
• Not be able communicate the extent of trauma due to a lack of understanding of healthy sexuality or appropriate boundaries in care provider or other relationships
• Have the need for a Forensic Interviewer with knowledge of autism
• Not have knowledge of the criminal justice system and the expectations to assist in prosecution
First responders and paramedics involved in search-and-rescue
response should be aware that individuals with ASD will seek out
items and locations that hold fascinations for them. Examples
include water sources, trains, and cars. Individuals may go to these
places without realizing the potential dangers involved. During
fires, individuals with autism have been known to hide in closets
or under beds to escape from the sound of fire alert systems.
looking for autism resourCes? visit WWW.autismsourCe.orglooking for autism resourCes? visit WWW.autismsourCe.org
L I V I N G W I T H A U T I S M
REFERENCES:
Autism Society. (2006). Results of the victims
of crime with autism survey (unpublished).
Baladerian, N. J. (2004). An overview of
violence against children with disabilities.
Presentation at the Best Practice II Conference
On Child Abuse & Neglect, Mobile, Ala.
Petersilia, J., Foote, J., & Crowell, N.A. (Eds.)
(2001). Crime victims with developmental
disabilities: Report of a workshop.
Washington, DC: National Research Council/
National Academy Press.
Wetherby, A.M., & Prizant, B.M. (2000).
Introduction to autism spectrum disorders.
In A.M. Wetherby & B.M. Prizant (Eds.), Autism
Spectrum Disorders: A Transactional
Developmental Perspective. Baltimore:
Paul H. Brookes Publishing.
RESOURCES:
Autism and CrimeAutism Society ~ 1-800-3AUTISM
www.autism-society.org/safeandsound
Find, or contribute, local resources for
victims of crime at Autism Source™, the
Autism Society’s on-line referral database:
www.autismsource.org
Offi ce for Victims of Crime,
U.S. Department of Justice ~ 1-800-851-3420
OVC has a number of useful publications and
materials, including Victims with Disabilities:
The Forensic Interview training DVD and
manual & Serving Crime Victims with
Disabilities DVD.
California District Attorneys Association
(916) 443-2017 ~ www.cdaa.org
The CDAA’s DVD, Crime Victims with
Disabilities: What the Prosecutor Needs to
Know, includes sections specifi c to autism.
National Center for Victims of Crime
(NCVC) ~ 1-800-394-2255
Disability, Abuse & Personal Rights Project
www.disability-abuse.com
L.E.A.N. On Us
(Law Enforcement Awareness Network)
www.leanonus.org
Autism Risk and Safety Management
www.autismriskmanagement.com
Crime Victim OrganizationsOffi ce for Victims of Crime,
U.S. Department of Justice ~ 1-800-851-3420
National Center for Victims of Crime (NCVC)
1-800-394-2255
National Domestic Violence Hotline
1-800-799-7233
National Organization for Victim Assistance
(NOVA) ~ 1-800-879-6682
National Resource Center on Domestic
Violence ~ 1-800-537-2238
If you appreciated the information contained in this publication, please consider off ering support
through a donation that will continue the availability of this information to others in need. Help
us continue the work so vital to the autism community by making a tax-deductible donation at
www.autism-society.org/donate_home.
4340 East-West Highway, Suite 350 Bethesda, Maryland 20814Phone: 301.657.0881 or
1.800.3AUTISMFax: 301.657.0869
Web: www.autism-society.org
This project was supported by Grant No. 2005-VF-GX-K023
awarded by the Offi ce for Victims of Crime, Offi ce of Justice Programs, U.S. Department of Justice. Points of view in this document are those
of the author and do not necessarily represent the offi cial position
or policies of the U.S. Department of Justice.
WANDERING & ELOPEMENT
Some Facts
A safety guide for people with autism and other developmental disabilities
Wandering Defined
AKA elopement, bolting, or running
"When a person, who requires some level of supervision to be safe, leaves a supervised
space and/or the care of a responsible person and is exposed to potential dangers such
as traffic, open water (drowning), falling from a high place, weather, or unintended
encounters with potentially predatory strangers."
ev supu
ble an
), f a h
ithtt dad t
g
tit ai l
l of
erso
g frf
Source: National Autism Association
49 % of parents reported their child with autism
had attempted to elope at least once after
4 years of age.
26 % were missing long
enough to cause
concern.Of the children who went missing:
24% were in danger of drowning 65 % were in danger of
a traffic injury
Source: National Institutes of Health (2012)
TOP 5 WAYS TO PREVENT WANDERING
For a side-by-side comparison of tracking devices or more information go to www.autismva.org
1 23 4
5
Have an emergency plan in place Secure your home with locks,
fences, etc.Inform neighbors and school
staff of safety concerns Alert first responders
Teach safety skills such as swimming
and crossing the street
ockskkock
National Autism Associationwww.nationalautismassociation.org
Offers Big Red Safety Kit and other safety
booklets at no cost
Autism Society of Americawww.autism-society.org
Safe and Sound Project provides prevention tips
and window clings (minimal $$)
Autism Speakswww.autismspeaks.org
Free safety tips; plus partners with Twigtale to offer
teaching stories for safety that can be personalized
(minimal $$)
Tracking Devices
Project Lifesaver
Kidsport GPS AngelSense
www.projectlifesaver.org
www.kidsportgps.com www.angelsense.com
Other Resources
Prevention
or
An
w
m ||
A Resource Provided by the National Autism Association
Meet the Police: A Guide to Introducing Children &Adults with ASD to Local Law Enforcement
Table of Contents
Copyright © 2017, National Autism Association. All rights reserved.
Meet the Police: A Guide to Introducing Children &Adults with ASD to Local Law Enforcement
MEETthe
POLICEA National Autism Association
Safety Initiative
Purpose 1
Schedule a Visit 2
Information to Provide 3
‘Meet Sheet’ Sample 4
Safety Steps 5
‘Meet Sheet’ Template 6
Information for Police 7
Published March 2017
Topics Covered
1. How to schedule a visit2. What information to provide to police about your loved one or client3. How to use a ‘meet sheet,’ along with other resources & tools provided in this guide4. Steps you can take to ensure the safety of your loved one or client
The Centers for Disease Control and Prevention (CDC) estimates that an average of 1 in 68 children in the U.S. have an Autism Spectrum Disorder (ASD) that can cause signifi-cant social, communication and behavioral challenges. These challenges often present unique safety risks, which may increase the chance of encounters with police and other first responders. The purpose of this guide is to help caregivers enhance the quality of search-and-rescue response and interactions between their loved one with ASD and members of law enforcement.
The purpose of this guide
"Sometimes the uniform scares people. But immediately when I went to the park, she recognized me and she came to me."
Deputy Amanda Vollmer, who helped locate a nonverbal 7-year-oldgirl who went missing in Nebraska - KETV.com, August 2016
In this guide, you will learn about:
According to 2012 data published in Pediatrics, 49% of children with an ASD attempt to elope from a safe
environment, a rate nearly four times higher than their unaffected siblings.
It’s also estimated that individuals with ASD will have seven times more contacts with law enforcement
during their lifetimes than the general population (Curry, Posluszny, & Kraska, 1993).
ASD behaviors like eye-contact avoidance, not responding to commands, or reacting differently to sounds,
lights and commotion, may be mistaken for defiance, non-compliance or drug/alcohol use and lead to
unsafe interactions with members of law enforcement.
Unique Risks
Meet the Police Toolkit - National Autism Association, 2017 1
Some individuals with ASD may have difficulty visiting a new place or new people. In the
event that your loved one or client is unable to visit with members of law enforcement,
drop off a ‘meet sheet’ instead. This will allow you to provide a personal introduction of
your loved one or client in written form. A meet sheet template and sample can be found
within this guide.
TIP
1. How to Schedule a VisitStart by getting the numbers of both your local police department and sheriff’s office. You can locate their non-emergency numbers on their websites.
Once you’ve identified the non-emergency number, call and say:
“I’m reaching out because my loved one has autism and I’m afraid he/she may be misunderstood should he/she ever have an encounter with law enforcement. May I schedule a time to introduce my loved one to members of your department and dispatch?”
Note: If you are a caretaker in a residential facility with multiple clients, or if your loved one is unable to do an on-site visit, ask if key members could visit the facility or your home. Remember that they handle many calls and inquiries each day, so please be patient and respectful.
“My good friend Gary Klugiewicz once told me — and I’ve never forgotten it — that ‘persons with brain-based disorders are more likely to have run-ins with the police than others, but
they are far less likely to commit a crime. When they get arrested or when an encounter
becomes violent between an officer and a subject with autism or other brain-based
disorder, it’s often because neither party knew how to communicate with the other.’”
From the article, Police and autism: New stats may forecast more contact with ASD subjectsDoug Wyllie, PoliceOne.com, April 2012
Meet the Police Toolkit - National Autism Association, 2017 2
Be sure to keep a copy of the ‘meet sheet’ in your vehicle.
Though it’s difficult to think about, this will allow first
responders to have important information about your
loved one in the event of an emergency.
TIP
2. Information to ProvideEven if your loved one or client has never wandered/eloped from a safe setting or had encoun-ters with police, it’s always important to provide law enforcement with critical information.
• Provide information on your loved one’s physical traits, behaviorial characteristics, medical needs, calming methods, and other vital information.
• Provide the “What is Autism” sheet located within this guide.
• Be sure to ask the dispatcher to note in their database that someone with autism lives in your home.
• Use the provided ‘meet sheet’ to give a personal introduction of your loved one in written form.
From the article, El Dorado County Registry Helps Find Missing People With Autism - sacramento.cbslocal.com, March 2017
‘We’ve noticed a rise in search and rescues with missing [persons with] autism,’ said
Lieutenant Jim Byers of the El Dorado County Sheriff’s Office. He says those inci-
dents spiked in the early 2000’s. And in 2005, the Sheriff’s Office launched an
autism registry to help.”
Meet the Police Toolkit - National Autism Association, 2017 3
3. ‘Meet Sheet’ Some individuals with ASD may have difficulty visiting a new place or new people. In the event that your loved one or client is unable to visit with members or law enforcement, drop off a ‘meet sheet’ instead. This will allow you to provide a personal introduction of your loved one or client in written form. A meet sheet template can be found within this guide. A sample is shown below. Print the template and provide the completed sheet to local first responders.
Joey
Joey
Joey
He is verbal, but has a hard time with spontaneous languageand gets very upset when asked a question verbally. He will a lso run if the radio or TV is playing.
Loves looking at round objects, especia lly sewer capson most roads. May also head to the 6th street park.
Please write down questions and allow him to answer bywriting/typing. He loves pictures of Spongebob, you can Google images of Spongebob and it will help him calm down.
(123) 555-1234
Jessica Smith
Thank you!!!
1/6/17
Meet the Police Toolkit - National Autism Association, 2017
Meet Sheet Sample (template available on page 6)
Purpose 1
Schedule a Visit 2
Information to Provide 3
‘Meet Sheet’ Sample 4
Safety Steps 5
‘Meet Sheet’ Template 6
Information for Police 7
Meet ______________________
______________________ is diagnosed with autism and could be misunderstood if there is ever an encounter with law enforcement or other first responders.
Because _________________ has difficulty visiting new places or people, I’m writing you today to introduce this amazing person who may not know what to do in a stressful situation.
In addition to some of the characteristics I’ve marked on the right side of this page, other behaviors include:
Should this person ever become lost, please search nearby water, busy streets and these places:
This person has certain likes/dislikes that may affect interactions with police or other first responders. To limit risk, please:
If this person is ever lost, I can be reached at
________________________or________________________.
I may be attaching other helpful information. Should you have any questions, please call me at the number listed above. Thank you for all the work you do to protect the lives of people with autism.
Sincerely,
Not speak
Appear deaf
Avoid eye contact
Not respond to their name or verbal commands
Rock, pace, spin or hand-flap (stimming), or repeat
phrases (echolalia)
Hold hands over ears due to sound sensitivity
Avoid or resist physical contact
Have unusual fears or obsessions with things like
flashing lights, sirens, K-9s
Not answer questions
Need time to process questions or demands
Try to run away or hide
Appear to be under the influence
Not be properly dressed for the elements
Have the mental capacity of someone much younger
This Person with Autism May:
Today’s date:
• If there is no imminent danger, give the individual time and space• Maintain a calm and relaxed demeanor• Look for a medical ID, contact caregiver immediately• Speak in a normal tone of voice using simple phrases • Use first/then approach to ease anxiety: “First, we are going to sit in the car, then we’ll see your Mom.”
How Do I Approach Someone with Autism?
Name:__________________________ Age: ______
Address:___________________________________
__________________________________________
Meds or Allergies:___________________________
Emergency Contact:__________________________
Joey Smith 762 Chatham St.
Anytown, USA 12345
Jessica Smith, (123) 555-1234
xxxx
sometimesx
xxx
x
x
x(age 3)
Mild allerg y to strawberries
(123) 555-5678
He drew you a picture on the back.
4
Many individuals with ASD have an impaired sense of safety and cannot effectively communicate when they need or want to go somewhere, or are feeling overwhelmed and need to get away from a certain environment. There are several key steps you can take to help prevent a wandering or bolting incident.
Some key tips:
• Safeguard your home by installing door/window chimes, a home security system, fencing• Use visual prompts like stop signs on windows and doors• Put identification on your loved one, especially for those who are non-verbal or minimally verbal
4. Safety Steps You Can Take
Free personalized ID’s are available through MedicAlert. Visit medicalert.org/autism.
Visit awaare.org and nationalautismassociation.org
for information and free wandering-prevention tools
and resources.
State Protection & Advocacy Agency: ndrn.org or 202-408-9514
Autism Information & Referral Center: 1-855-828-8476
If a child with autism is missing, Dial 911, then call the National Center for Missing & Exploited Children at 1-800-THE LOST (1-800-843-5678)
Local Resources: yellowpagesforkids.com
Poison Control: 1-800-222-1222
Non-emergency Police Numbers___________________________________
___________________________________
Doctors/Pharmacy___________________________________
___________________________________
Other___________________________________
TOOLImportant Numbers to Customize & Keep
Safety Resources
Everything beyond this page can be printed andprovided to law enforcement and other first responders.
NOTE
Meet the Police Toolkit - National Autism Association, 20175
Meet the Police Toolkit - National Autism Association, 2017
Meet ______________________
______________________ is diagnosed with autism and could be misunderstood if there is ever an encounter with law enforcement or other first responders.
Because __________________ has difficulty visiting new places or people, I’m writing you today to introduce this amazing person who may not know what to do in a stressful situation.
In addition to some of the characteristics I’ve marked on the right side of this page, other behaviors include:
Should this person ever become lost, please search nearby water, busy streets and these places:
This person has certain likes/dislikes that may affect interactions with police or other first responders. To limit risk, please:
If this person is ever lost, I can be reached at:
_______________________ or___________________________.
I may be attaching other helpful information. Should you have any questions, please call me at the number listed above. Thank you for all the work you do to protect the lives of people with autism.
Sincerely,
Not speak
Appear deaf
Avoid eye contact
Not respond to their name or verbal commands
Rock, pace, spin or hand-flap (stimming), or repeat
phrases (echolalia)
Hold hands over ears due to sound sensitivity
Avoid or resist physical contact
Have unusual fears or obsessions with things like
flashing lights, sirens, K-9s
Not answer questions
Need time to process questions or demands
Try to run away or hide
Appear to be under the influence
Not be properly dressed for the elements
Have the mental capacity of someone much younger
This Person with Autism May:
(place image here)
Today’s date:
• If there is no imminent danger, give the individual time and space• Maintain a calm and relaxed demeanor• Look for a medical ID, contact caregiver immediately• Speak in a normal tone of voice using simple phrases • Use first/then approach to ease anxiety: “First, we are going to sit in the car, then we’ll see your Mom.”
Name:__________________________ Age: ______
Address:___________________________________
__________________________________________
Meds or Allergies:___________________________
Emergency Contact:__________________________
How Do I Approach Someone with Autism?
6
A Person with Autism May:
• Not speak
• Appear deaf
• Avoid eye contact
• Not respond to their name or verbal commands
• Rock, pace, spin or hand-flap (stimming), or repeat
phrases (echolalia)
• Hold hands over ears due to sound sensitivity
• Avoid or resist physical contact
• Have unusual fears or obsessions with things like
flashing lights, sirens, K-9s
• Not answer questions
• Need time to process questions or demands
• Try to run away or hide
• Appear to be under the influence
• Not be properly dressed for the elements
• Have the mental capacity of someone much younger
How to Recognize Signs of ASD
Autism Spectrum Disorder (ASD) is characterized by social-interac-tion difficulties, cognitive impairments, communication difficulties, and repetitive behaviors. Because autism is a spectrum disorder, no two people with autism are alike. ASD can range from mild to severe and occurs in all ethnic, socioeconomic and age groups. The Centers for Disease Control and Prevention (CDC) estimates that an average of 1 in 68 children in the U.S. have a diagnosis of ASD that can cause significant social, communication and behavioral challenges. These challenges often present unique safety risks.
Unique Safety RisksAccording to 2012 data published in Pediatrics, 49% of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings. It’s also estimated that individuals with ASD will have seven times more contacts with law enforcement during their lifetimes than the general population (Curry, Posluszny, & Kraska, 1993). ASD behav-iors like eye-contact avoidance, not responding to commands, or reacting differently to sounds, lights and commotion, may be mistaken for defiance, non-compliance or drug/alcohol use and lead to unsafe interactions. Also be aware that older people with autism may have the mental capacity of someone much younger.
Things You Can DoTo help enhance safety among children and adults with ASD, consider hosting meet and greets or other safety events at your station, a local school, library, park, etc. It would be helpful to collaborate with your local special education director or superin-tendent to schedule school visits. This will allow individuals with ASD to become familiar with your officers, uniforms, vehicles, and K-9s. You can also start a voluntary registry for members with ASD in your community.
What is Autism?
If a person with autism is ever missing, search nearby water and busy roads first.
TIP
Meet the Police Toolkit - National Autism Association, 2017
• If there is no imminent danger, give the individual time and space• Maintain a calm and relaxed demeanor• Look for a medical ID, contact caregiver immediately• Speak in a normal tone of voice using simple phrases • Use first/then approach to ease anxiety: “First, we are going to sit in the car, then we’ll see your Mom.”
How Do I Approach Someone with Autism?
7
"I was able to lay down on the deck and he reached out to me and I pulled him up. I just
grabbed him, bear hugged him wrapped him in my jacket and took off running.”
Patrolman Joshua Leveronne, who rescued a nonverbal 4-year-old boyfrom a wastewater treatment pool - WDRB.com, March 2015
3%6%
10%
31%
51%
First Responder/Rescue crews Good SamaritanAlert System or Reverse 911 Tracking Unit or IDNeighbor
Figure 1: Non-lethal outcomes by key rescue component,Mortality & Risk in ASD Wandering/Elopement, NAA, March 2017
Similar to wandering behaviors in seniors with dementia or Alzheimer’s, children and adults with ASD are prone to wandering away from safe environments. People with ASD may wander or bolt from safe settings to get to something of interest, or to get away from something stressful, such as loud noises, commotion, or demands. They often seek low-sensory environments, or favorite topics or places.Dangers associated with wandering include drowning, traffic injury, falling from a high place, exposure, and assault.Because people with ASD are often challenged in areas of language and cognitive function, it can be difficult to teach them about dangers and ways to stay safe.From 2011 to 2016, National Autism Association (NAA) collected data on over 800 U.S. missing person cases involv-ing individuals with an ASD. Certain results from that data (right & below) could help your department understand where to search for a missing person with ASD, and what components played a role in successful recoveries. There are also a wide variety of training programs for first responders, plus tools and technology that can help. For information on how to access these resources, please write to [email protected].
Autism & Wandering
In/near water
In/near traffic
Woods or brush
Stranger's residence
Store, restaurant or attraction
Train or bus station
Abandoned vehicle, home or area
On/near train tracks
Farm or field
Park
0 40 80 120 160
Non-lethal Lethal
Top Places They Were Found
Figure 2: Non-lethal and lethal outcomes by top places they were located,Mortality & Risk in ASD Wandering/Elopement, NAA, March 2017
Key Rescue Component
Meet the Police Toolkit - National Autism Association, 20178
HANDOUTS:
1. 10 Things Every Child with Autism Wishes You Knew
2. Commonwealth Autism: Wandering & Elopement
3. Meet the Police: A Guide to Introducing Children & Adultswith ASD to Local Law Enforcement
4. Autism: Information for Law Enforcement and Other FirstResponders
INSERTS:1. On the Scene and Informed: First Response and Autism
pamphlet2. Disability Identification Sheet
Virginia Law Enforcement DAT
As is true with all disabilities, there will be a variation inseverity of symptoms.
To note, the Diagnostic and Statistical Manual of MentalDisorders – Fifth Edition (DSM-V) has folded all previouscategories of Autism Spectrum Disorders into one.
This change means diagnoses such as Asperger’s Syndrome,Rett Syndrome, and Pervasive Developmental Disorder-NotOtherwise Specified (PDD-NOS) all are now considered underAutism Spectrum Disorders (ASDs).
CLICK TO “COMMUNICATION”
Individual may have delayed or no language at all. They maysay words that serve no functional purpose and have nomeaning. They will not compensate that by gesturing.
If you are communicating with them, they may not give theirattention for any duration.
CLICK “SOCIAL INTERACTION”
Virginia Law Enforcement DAT
Many individuals will have no interest in social interaction andspend time alone. They will not understand or be receptive orresponsive to social cues. You may find them talking tothemselves.
CLICK “SENSORY IMPAIRMENT”
Some individuals will be very aversive to touch. They may self-stimulate – one way they would do this is by rocking. Theymay also be very sensitive to loud environments.
CLICK “PLAY”
With children, individuals may have no interest in anyrecognizable form of (interactive) play.
Virginia Law Enforcement DAT
PLAY VIDEO
This serves as an introduction to what we will be addressingregarding ASD. It comes in many forms but there are somecharacteristics and traits that could be consistent across thespectrum.
She states that initial interaction may not indicate ASD. Recallour discussion on how disabilities present. There willprobably be no physical distinction initially, but a trainedemergency responder should be able to recognize it shortlyafter contact.
If the person communicates verbally, they could repeat whatyou said (echolalia, as was discussed under the TouretteSyndrome section), say “yes” to everything, not respond at all,or talk on an unrelated subject. They may also not respond to
Virginia Law Enforcement DAT
you even if you address them by name.
Eye contact may be avoided, may squint or glance. Do notexpect direct, eye-to-eye contact.
Caregiver, similar to individuals with intellectual disability,should be present to assist you and fill in where you are notgetting proper responses. People with more involved autismwill be in the care of a parent or service provider.
Be aware that touch may not be received well.
We will expand on all these areas but use Lori to reflect backon.
Virginia Law Enforcement DAT
CLICK AND READ FIRST 2 BULLETS
Although not all individuals with ASD will exhibit challengingbehaviors, it is a characteristic with some that can be verydifficult.
Routines will be established that allow for an individual tosettle into a “comfort zone” that will alleviate negativebehaviors. However, if routine is altered, it could lead tochallenging behavior.
Overstimulation can be visual, auditory, or social, such as anexcessive number of first responders in a residence.
CLICK AND READ LAST 2 BULLETS
More involved individuals will not understand self-preservation – a fire alarm will be ignored, walking in a busystreet will not be recognized as dangerous, going into waterbut unable to swim.
Pain threshold can be very high – someone who punches awall may do it repeatedly and show no signs of pain.
Virginia Law Enforcement DAT
May also be called maladaptive or negative behavior. Preferredterm from VA DBHDS is challenging behaviorAnxiety could lead to challenging behaviorBehavior is not present because the person has autism.. Thereare factors that bring on behavior, such as the inability tocommunicateBehavior is communication. The person is telling you somethingthrough their actions
Virginia Law Enforcement DAT
Captain Deichler takes us through the proper way to approach,address and interact when responding to an individual withautism.Three steps are necessary when going to the scene where anindividual with autism (or any disability) may be present;
Recognize if the person has a disabilityFigure out the best way to handle the situation thatemphasizes safety for both the individual and the officer
Determine why you are here and what your role is toaddress the matter
Officer needs to determine the comfort level relative to theindividual and law enforcement presence. Captain Deichlernotes that his son is very comfortable. However others maynot. This could be for a number of reasons we will address inthis section, many not having to so with law enforcement per
Virginia Law Enforcement DAT
se.Be aware of a lack of eye contact and delayed response.Patience will be at a premiumAsk simple questions and don’t speak for them or ‘fill in theblanks’There be a stress present in the form of caregivers, noise,number of individuals, change in routine, or any of a number offactors. Minimize if you can identify it.Cut down distractions such as TVs or barking dogsPain threshold can be much higher in individuals with autism,sometimes it’s best to let it play out
Virginia Law Enforcement DAT
CLICK AND READ FIRST BULLET
Non-verbal behaviors will be impaired, may seem odd orstrange.
Eye-to-eye contact may be too over-stimulating for anindividual with ASD. DO NOT demand that the person lookyou in the eye. They are not being disrespectful.
Their facial expression and body posture may also not betypical of the interaction or incident.
CLICK AND READ SECOND BULLET
Many individuals with ASD may have little to no interest inpeers relationships or may just lack the interpersonal skillsnecessary for making friends.
CLICK AND READ THIRD BULLET
They may not share items of interest or may not come over toa parent to show what they just achieved/made/did.
Virginia Law Enforcement DAT
CLICK AND READ LAST BULLET
Emotions will be minimal, if at all, relative to events that mayspur emotions in a neurotypical child.
A child opening presents on his or her birthday may show littleinterest or joy in that. Loss of the family dog or a close lovedone may not produce any (visible) emotion.
Virginia Law Enforcement DAT
CLICK AND READ 6 BULLETS
Discuss how these might challenge an officer.
Once identified as ASD, there will be a greater understandingof what you are confronted with, and how to deal with it.
Virginia Law Enforcement DAT
CLICK AND READ FIRST BULLET
The continuum of verbal skills will range from no words orsounds to full conversational fluency.
Communication is compromised in at least 50% of individualswith ASD, in that they have no verbal skills.
The other 50% may have verbal skills, but with some, speechmay not be very functional.
CLICK AND READ SECOND BULLET
These are individuals who have no speech challenges and cancommunicate basic needs and wants, but the ability to carryon a conversation may be seriously compromised.
These individuals will pose significant challenges to an officerbecause it will be harder to recognize that there is a disability.
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CLICK AND READ THIRD BULLET
If they are repeating phrases from a TV show, or obsessed withshoes, and continually say “shoe,” it serves no functionalpurpose.
CLICK AND READ LAST BULLET
The individual, as we noted earlier, would have minimalinterest in play or interacting with peers who are playing.
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CLICK AND READ 6 BULLETS
These bullets correlate with the previous slide. Reflect back on what Lori said in the video about someone talking about his/her pet or shoe collection.
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CLICK AND READ 5 BULLETS
This is a continuation of the previous slide.
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Officer displays genuine respect, communicating with theindividual directly and with a purpose and a flowIndividual lacks clarity in speech, must listen attentively.However, individual is responsive and comfortable with theinteraction with the officerIndividual displays common communication characteristics ofecholalia (often repeating the last word the officer says) andanswering Yes (Oh yeah) to most questions. This makes ituncertain as to the accuracy of his answers.He understood the request for his wallet but not hisidentification. Officer Rodriguez had to rephrase the questionslightly. Once he understood wallet, Danny presented itaccordingly.When asked his phone number, he did say it, although you mayneed to ask a second time if he did not answer the first time.Expect to repeat questions.
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There are different modes and means of communication.Individuals will utilize what they prefer
If an individual is verbal, they may have peculiar or an odd toneof voice or their volume may not fit the moment
An individual may converse with you in a tight quarters. Theymay ‘get in your face’ but are not intending to be aggressive
REFERENCE THE COMMUNCATION Handout for detailsPicture Exchange Communication System (PECS) is a tool thatthey carry with them, taking pictures and making a ‘sentence’on a Velcro pad
Some will use Ipads. You will see this later
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CLICK AND READ FIRST BULLET
Unusually intense interest in collectibles (ex. baseball cards),hobbies (ex. trains), academia (ex. math, biology), etc.
The intensity of the individual’s interest can be extreme andall-consuming.
CLICK AND READ SECOND BULLET
Key word is “nonfunctional,” in that they will stay fixated on aparticular behavior or object and will not be influenced tostray away from it. This could be a room they go intofrequently to “see what is going on” or spinning a shoelace.
CLICK AND READ THIRD BULLET
These will be ongoing behavior or movements and almoststandard practice.
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CLICK AND READ LAST BULLET
May be preoccupied with an object or part of it (ex. pen cap,string). Focus is, for the most part, just on that object and itcould go on for a long period of time.
The absence of that object could lead to negative behavior.
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CLICK AND READ 11 BULLETS
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PLAY VIDEO
Ask if the trainees saw anything that may indicate ASD?Allow time to respond. Encourage response.
How about Brendan’s stare and the way he moved hislips? Also, did he recognize the camera trained on him?It did not appear he did.
Paula says Brendan never stops moving: rocks, moves around,takes off, or screams. Imagine the challenge he posed a fewyears back when he screamed constantly.
Paula also noted his echolalic responses, that he doesn’t saythe word “no,” and that he sings his address.
He runs away or “elopes.” This is common behavior with someindividuals with ASD. He goes to neighbors’ backyards, theirdecks or patios.
His parents were proactive and talked to all the neighborswhen they moved in.
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How about the neighbor that sees a suspicious person in theirbackyard and calls LE?
What might indicate ASD? They will likely continue to do whatthey are doing: looking in a window or swinging on the swingset. This should be a first sign. They usually will not run awayunless you try to grab them.
Police departments should encourage neighborhoodawareness and contact with the department to let them knowin advance (proactive), that their child has ASD and mayexhibit certain behaviors.
Important point: Paula notes her concern that police may notknow how to respond and perceive the behavior as criminalactivity. It is a common belief among parents with ASD(reference “dark side of autism” article).
Again, stress the need for law enforcement to follow up withthe materials provided to stay on top of this.
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CLICK AND READ 4 POINTS
Sitting may help the person to remain in one area. Remember,indicate where you would like them to sit, to include pointingat the chair.
When you position yourself at a short distance, it is also lesslikely to provoke aggression. If you are too close, theindividual may feel pressured or threatened.
Remember, violating the personal space of someone withautism may bring about negative behavior.
We have noted the need to use short and simple statementsin conversation throughout this section and others. Keep thisin mind as a tip when interacting with individuals withdisabilities who have autism or cognitive challenges.
Virginia Law Enforcement DAT
CLICK AND READ 5 BULLETS
As mentioned before, avoid any slang terms or statements.These will be very confusing to the individual.
“It’s raining cats and dogs,” “You’re pulling my leg,” and “Holdit right there!” are all examples of slang terms that are notconcrete and an individual with ASD will not understand.
An example of a literal phrase is in the movie Rainman whenhe was crossing the street the sign changed to “Don’t Walk,”so he stopped in the middle of the intersection.
Your patience may be tested when you find yourself having torephrase questions or statements that you commonly use.However, this will be necessary in order to receive accurateresponses.
Some examples of filters are asking a woman if she is
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pregnant, a comment about a haircut (“You look like a boy”), or a person’s odor, to name a few.
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CLICK AND READ 3 BULLETS
This is a tip for understanding if the person is reliable in theirresponse.
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PLAY VIDEO
Ellen’s daughter triggers from anxiety or anxious situations,when she is nervous around strangers, or when she isuncertain in situations (i.e. confused, lots of people). This canlead to behavior issues that can be significantly negative.
She can exhibit self-injurious behavior (SIB) in the form ofbiting and/or may physically attack you.
She is not generally violent, but lacks communication skillsand needs compassion. Ellen is saying her intent is not to beaggressive or attack an individual but frustration with herdisposition may bring on unwarranted behavior.
Her “attack” not intended to harm, but is in response tosomething that troubles her at that time.
A window decal shows responders there is an individual withASD in the house or car. Any advance notice is good for you.
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Have your department or you as an individual officerencourage the window decals and request families inform thedepartment in advance if there is a member with a disability.
Note: Ellen’s daughter also has seizure disorder. As wementioned earlier, many people have 2 or 3 disabilities.
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These will be expanded on over the next several pages
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If a respite break is not available for the person with autism,remember that you may solve the problem by having thecaretaker relocate for a short while.There are times when family, teachers and caretakers are soclose to the situation they are unable to see that a short breakaway from the daily stress of the situation may be all that isneeded, at least in the short term.Respite means a break for caregiving. The intention is to allowthe parent(s) or caregiver an opportunity to get out, be it forsocial, recreational, or functional purposes (i.e. shopping,haircut)
Virginia Law Enforcement DAT
This is not a population where the need for arresting isprevalent. Here is a major difference between individuals withintellectual disabilities, where arrest is more common.There will most likely be high anxiety if there is need toconfront, restrain, and/or handcuff. Expect resistance. Moreaggressive behavior on the part of the officer will escalate theperson’s challenging behavior.Recall Major Deichler’s comment in the video about a higherpain threshold. Injury will be more common as many will notreact to pain control tactics.
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• Discussion will continue on the next page
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Did the officer have any other options other than cuffing andarrest?
How would you have handled this call?
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DISCUSS THIS ENCOUNTER
Individuals with autism can put themselves in a precarioussituation in public when social norms are ‘violated’
The public may not be well versed in autism, and their responsecould lead to a 911 call
You may find yourself explaining to citizens how autismpresents, and how you will follow-up
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This incident will be revisited at the conclusion of this section
Note the boy said he was ‘stimming’. What is this?
He showed the string, how might this indicate he has autism?
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Discuss the incident. We will watch it again from the body camat the end of this section.
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If you are called to a school, always talk to the person first.Teacher/Administrator second.
You are now challenged with interviewing a youth who ALSOhas autism. This puts the person at a marked disadvantage
You may receive little or no explanation from the individualwhile the teacher/administrator may provide extensive details.
How accurate is their account? How well do they understand autism?
Do not assume they are aware of autism and the best responsebecause they are educators.
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Engaging physically and handcuffing are the absolute lastresort. The individual may resist well beyond anticipatedparameters
As we discussed, communication may not be verbal. Beprepared to alter communication techniques or adjust to theirmode of communication.
Virginia Law Enforcement DAT
This is especially the case for SROs. You should be involved inthe IEP, to some extent, and made aware of students whosebehavior could be assaultive or aggressive.Most schools have a great deal of experience in dealing withstudents who have disabilities. It is often the first responderswho do not have this type of experience, so it is important tobe familiar with how the school has handled any similarincidents in the past.If there is a resource officer, s/he should be contacted ifavailable to help first responders gather as much informationabout the situation and circumstances as possible.
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CLICK AND READ 2 POINTS
Show the Disability Identification Sheet. Encouragedepartments to educate parents to use them. Ellen statedthat she has one.
The decal alerts first responders about individual with ASD.
Some families may not want to display this for fear ofexposing their child. Perpetrators may seek out vulnerableindividuals.
Also look for identification – most responsible parents orcaregivers have provided the individual with identification inthe form of a bracelet or actual ID card.
You may need to find the individual’s identification. Whilesome individuals may have a bracelet or ID card, others mayhave ID on places like their shoelace, ankle, or neck.
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CLICK AND READ SLIDE
Few individuals with ASD are going to have a weapon or go forone; the concern would be any object that is within reach thatcould be thrown when he or she is upset.
Intent would not be to injure, but more so to allow them tovent when upset.
Be aware of the surroundings when interacting with someonewho is exhibiting negative behavior.
Virginia Law Enforcement DAT
CLICK 5 BULLETS
Be aware that they may naturally reach to give you ID or otherinfo. Directing them not to do so may not be understood.
Do not react with force if above happens.
Remember, Brendan in the previous video sang his address.One of the skills schools and parents work on is some form ofself-identification for instances like this when first response isoccurring.
Most people with ASD are not prone to carry or use weapons.If you have recognized the disability, understand that this isprobably not a dangerous situation, if the person seemscompliant and not anxious.
Virginia Law Enforcement DAT
CLICK AND READ 5 POINTS
These would indicate SIB and not necessarily abuse. Watchindividual during questioning for SIB; may bite self or indulgein other harmful behavior.
Appearance of neglect (based on unkempt look) could also berelated to the challenges of sensory overload that haircuts orshaving would exacerbate.
Virginia Law Enforcement DAT
CLICK AND READ FIRST BULLET
Touch is a sensory matter and some people with ASD are verysensitive to it.
They may react in an aggressive manner (if feeling trapped) ortry to flee the scene.
CLICK AND READ SECOND BULLET
Escape, or elopement, is exiting when they “have an opening.”An individual could slide out an unlocked door or windowunbeknownst to caregivers or bolt past you or familymembers when they see an open door.
CLICK AND READ LAST BULLET
Oftentimes the behavior, if not identified as ASD, can beconfused for drug abuse or mental health problems.
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CLICK AND READ SLIDE
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CLICK AND READ 5 POINTS
Early warning signs (EWS) allow the caregiver and educatedofficer an opportunity to change the course of theconversation or back off for a few minutes so as to allow theindividual to de-escalate.
EWS could simply be increased agitation.
Virginia Law Enforcement DAT
CLICK AND READ 11 BULLETS
More EWS. The end result could be aggressive behavior or anattempt to flee, however, some individuals may display thesebehaviors as part of their routine.
Note that ALL signs are, for the most, somewhat easy torecognize.
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CLICK AND READ 5 POINTS
Trying to work through the signs will only heighten the matter.It is important to recognize that you will need to step back ifEWS are evident.
Virginia Law Enforcement DAT
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First responders are not trained to stand back and watch whilesomething fizzles out and defuses. Officers may feel thesituation is unsafe and out of control, but once again the bestresponse may be no response when a meltdown is in progress.As always, safety of everyone involved comes first and those atthe scene must assess if a situation becomes dangerous to thepoint that you can no longer simply stand by.Should that occur, there may be a need to apply physicalrestraints. Enlisting the help of someone familiar with theindividual is a great advantage if physical contact becomesnecessary.First responders are not trained to stand back and watch whilesomething fizzles out and defuses. Officers may feel thesituation is unsafe and out of control, but once again the bestresponse may be no response when a meltdown is in progress.As always, safety of everyone involved comes first and those at
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the scene must assess if a situation becomes dangerous to the point that you can no longer simply stand by. Should that occur, there may be a need to apply physical restraints. Enlisting the help of someone familiar with the individual is a great advantage if physical contact becomes necessary.
Virginia Law Enforcement DAT
CLICK AND READ 4 BULLETS
As we’ve discussed, when you’re dealing with a more involvedindividual, in most instances, there will be a family member orcaregiver present.
They should be guiding you as to the best way to interact,which would include direction on when to proceed.
There will be some instances where touch will produce moresevere behavior but you will still need to physically restrainthe individual for his/her safety and well-being.
In essence, waiting for the challenging behavior to subside willnot be an option.
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First responders have probably made such a call, and if youhaven’t, you likely will in the near future if you have a personwith autism in your patrol area.Many times each year someone with autism will die from thistype of exposure. They will often leave the house in extremecold with no jacket, or will crawl into a car or metal shed in hightemperatures while trying to hide.The number one reason for death is by drowning. Waterattraction is high among people with autism.Some individuals with autism may know how to swim, othersmay have no knowledge. Even those that know how to swimmay be in too long, or go into creeks or rivers.
Virginia Law Enforcement DAT
This sign, and others that indicate a person with a disability(i.ea blind person) are meant for first responders as much as theyare for the drivers of vehicles and residentsFor example, if you saw a person walking in the road and wasunresponsive to your questions and seeing the sign, youshould put the two together.
Virginia Law Enforcement DAT
It is crucial that first responders talk with the parent orcaretaker to determine where the individual may go, as manyelopers have favorite spots or attractions they are trying tofind.The longer the individual is missing the greater the risk.Immediately contact the caretaker to determine how long theindividual has been gone and what direction, if known, thatmay have been taken.While these situations may seem unlikely, this is not the case.All these scenarios have occurred enough times that firstresponders should be aware of and do what they can to quicklylocate the individual and return them safely home.
Virginia Law Enforcement DAT
Offer to walk through the neighborhood with the parent(s).Many people may not feel comfortable going door to dooralone. That can be easily alleviated if an officer joins them andshows support for the family and the initiative.Stop by when the situation is calm. Provide support by lettingthem know the local PD is proactive in its efforts to assist themand be aware of how the person’s disability presentsNever assume parents or caregivers know all the tracking oridentification options, some of which were discussed earlier.Take the lead on this
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CLICK AND READ “ESCAPE”
As discussed, some people with ASD may figure out the locksof their home and elope.
Ask the parent or caregiver the individual’sinterests/likes/attractions within the neighborhood orsurrounding area.
Encourage family members to inform their neighbors if theirchild is one that elopes.
CLICK AND READ “WATER ATTRACTION”
Linked to the previous bullet, identify pools, ponds, and otherbodies of water in the vicinity when responding to anindividual who has escaped. A leading cause of death amongindividuals with ASD who elope is drowning.
CLICK AND READ “OVERSTIMULATION…”
For some individuals with autism, overstimulation can lead tonegative behavior. This includes excessive number of people,noise or increased volume, or bright lights.
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Think of an emergency scene where several first respondersarrive, there are flashing lights and sirens and a lot of noise.This can be overwhelming for anyone, but even more so forsomeone with ASD.
Sensory issues could lead to an escape from the scene orheightened negative behavior.
CLICK AND READ “ECHOLALIA…”
As discussed, an individual with ASD may repeat words orsentences that you say.
CLICK AND READ “CONCRETE TERMS”
As discussed, be specific and concrete. State what you arelooking for clearly and precisely.
CLICK AND READ “AVOIDANCE OF TOUCH”
Again, many individuals with ASD may have negative reactionsto touch. If at all possible, touching someone should be a lastresort.
CLICK AND READ “NO REAL FEAR…”
For many, it will appear as if there is no fear of dangeroussituations. For example, walking in traffic or reentering aburning building.
CLICK AND READ “HIGH PAIN THRESHOLD”
Person may not react to painful stimuli or may actually inducewhat would be considered to be painful, like punching a wallor banging his/her head on a table.
CLICK AND READ “RESTRAINT”
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Restraint should be a last resort; if you must restrain,interaction should be calculated to avoid injury to officer orperson
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PLAY VIDEO:Point of emphasis with Philip is most people see someone wholacks intelligence, can not communicate, and is aloof to hissurroundings. This is not the case.We are exposed to many emotions; excited, happy, anxious,tense, uncomfortable, calm, mature, and open.We also see a community recreation program. Go back to ourdiscussion about inclusion and presence in the community.Getting to know these programs and activities exposes you toindividuals, places, and awareness.
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CLICK AND READ SLIDE
NOTE this is what was referred to as Asperger’s Syndrome. The Diagnostic and Statistical Manual (DSM) for Mental Disorders eliminated the term in 2013.
Individuals with what was once known as Asperger’sSyndrome will be able to live in the mainstream; they do nothave an intellectual disability and will be able to verbalizecoherently.
Behavior may still present challenges, as indicated in priorslides; some people will have more difficulty than others.Aversions to textures, smells, and tastes, as well as touch, arelikely to exist.
Police officers should understand that individuals with HFAwill be able to function in society with minimal support.
These individuals, while fully capable in mainstream society,
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may actually cause greater challenges to law enforcement than more involved individuals with ASD, as recognition will be difficult.
Virginia Law Enforcement DAT
CLICK AND READ 6 BULLETS
These bullets, in some ways, will recap what we have alreadyidentified; however, imagine yourself in the position whereyou are interacting with someone who displays thesecharacteristics.
Although intellect is of (at least) average level, individuals maystill struggle in situations that are challenging, like anemergency.
They would also require concrete sentences (no slang) andmay require you to re-word your question or request.
Virginia Law Enforcement DAT
CLICK AND READ FIRST BULLET
Because of the potential for communication deficits, they maylack the ability to what would be considered appropriateconversational skills.
CLICK AND READ SECOND BULLET
An incident relating to a 911 call, for the most part, is going toaffect anyone’s routine. An individual with HFA may showsignificant signs of stress with this disruption.
This may call for a need to calm the person, which could bevery challenging. Individuals who have HFA may not comeacross as having a disability, however, their demeanor andspeech pattern may be extreme.
CLICK AND READ LAST BULLET
While the situation may be very serious and dire, the personmay give no indication relative to their tone or demeanor.
Some individuals who have, or are believed to have HFA, are
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Dan Aykroyd, Bill Gates, Albert Einstein, Mozart, Charles Darwin, and Bobby Fischer (chess)
Virginia Law Enforcement DAT
The inability to understand and respond in social situations can put people with (high functioning) autism in a bad position, especially if it involves a police officer.
While we read facial expression, and you use it wheninteracting with an individual, it may not be read by a personwith HFAPeople will ask questions to better understand what ishappening. People with HFA may not have the words.We have all been in a place where we realize an apology is inorder, however, someone with HFA might not grasp the need.
“I’m sorry officer, I did not understand your question” may never occur.
Response to teasing, sarcasm, or even jokes will not beunderstood. Response could be hostile, confusing, or none atall. Recall that concrete, literal thinkers may not understand it iseven taking place.
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People who are in need of assistance, be it asking for directions(lost), injured, or threatened will call for or ask for help. This skillmay not be present with some individuals with HFA.REMEMBER, intellect is not compromised with theseindividuals. They have average to above average intelligenceBUT need to learn basic skill sets
Virginia Law Enforcement DAT
At the Institute for Autism Research (Canisius College-Buffalo,NY), they address each of the skill traits through clinics andsummer camps.This is how they teach the skill set of facial expression
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RECOGNIZE subtle traits such as a peculiar voice patternIDENTIFICATION will most likely be offered up by theindividual. Note Diego stating it right way. If not statedinitially, asking if they have autism is appropriate.APPROACH will require a welcoming demeanor and calmvoice.INTERACTION is similar to an individual without a disability.People with high functioning autism are often very Intelligentand are able to verbally communicate and understand medicalterms. However, concrete language must be used.
Virginia Law Enforcement DAT
CLICK AND READ 7 BULLETS
What society fears the most with people with disabilities isnegative behavior. Individuals avoid people with disabilitiesfor fear of the unknown response or reaction, which mayinclude challenging behavior.
The disabilities with the highest incidence of negativebehavior are ASD and ID.
Many people believe the behavior occurs because of thedisability – this is a misperception. The behavior occursbecause of one of the reasons listed on this slide.
The inability to understand certain situations or circumstancescan lead to any of these.
Behavior, as defined in this context, refers to actions that arenot socially acceptable or the individual lacks control.Examples include SIB and screaming in public.
Virginia Law Enforcement DAT
CLICK AND READ 6 BULLETS
Note how someone might have a behavior challenge if his/herinability to communicate did not allow for them to say whatthey intended (indicate he/she is lost), felt (sick, headache), orwanted (thirsty, need water).
Think of the suffering one might have from an undiagnosedmedical condition or illness that they cannot communicate.This could lead to behavior that is simply due to the pain ordiscomfort. In this case the behavior is a form ofcommunication.
BOTTOM LINE: behavior is a form of communication. Theindividual is “saying” something by their actions. Ellen, themom with the daughter with ASD, clearly states how herchild’s actions are linked to a lack of communication skills.
Virginia Law Enforcement DAT
Verbal techniques, when incorporated appropriately, willdiffuse negative behavior. It will not call for traditionaltechniques. Some individuals will not understand yourdirections or commands if used in a direct or authoritarianmanner.
CLICK AND READ “ASK SHORT QUESTIONS…”
As discussed in previous sections, keep it short and simple.
CLICK AND READ “REASSURE THE PERSON…”
There is no greater comfort level in an emergency situationthan the reassurance from law enforcement that you’re thereto assist them in their time of need.
This is when individuals will need you the most. Properresponse in a manner that shows compassion will go a longway.
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CLICK AND READ “ACKNOWLEDGE…”
Do not judge or make assumptions as to why the behavior isoccurring. This will not allow you to address the situationholistically.
CLICK AND READ “HUMOR…”
Although humor can be used in certain situations, you shouldbe selective and be sure it is the right moment.
CLICK AND READ LAST 2 BULLETS
Unless the person is a threat to self or others or is damagingproperty, you should avoid touch or confrontation. Sometimesit’s best to let the person vent.
However, it is not okay to harm self, others, or property, andintervention may need to take place. This may be the reasonyou were called.
Virginia Law Enforcement DAT
Law enforcement is trained that safety is the number onepriority on all calls
Safety concerns apply to both the officer and the person youare encountering
As has been stated repeatedly, understanding the disability andrecognizing behaviors and mannerisms can assist in restoringorder safely.
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Intent is to restore the safe space or buffer zone
If the reason you are there relates to aggressive behavior, thesetechniques may be futile. However, ask the caregiver what maywork
Sometime a new face may be a calming presence. If yourapproach is calm and deliberate, this may de-escalate
Remember, Captain Deichler noted that the reason for theagitated behavior may be the caregiver or what is happening inthe room
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Control techniques like neck restraints and use of bodyweightmay be detrimental, advancing a medical response orexacerbating aggressive behavior
Many individuals will not understand hands on techniques, andfight back with more strength and vigor
Avoid touch, utilize only as a last resort. When utilizing, notethat the ability to de-escalate may be more prolonged
Virginia Law Enforcement DAT
As was noted earlier, pain thresholds can be heightened forsome individuals with autism.
An awareness of this is essential so as to not put the person inperil, and yourself in a troubling situation
Verbal responses such as “I’m OK now”, “Had enough”, “Thathurts” are an indication that the individual is done
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Making others aware helps to avoid misunderstandings such asslow response or perceived non-compliance
Combative or aggressive behavior can be triggered again.Information sharing may alleviate repeat challenges
Caregivers will naturally know more information and details, toinclude random triggers.
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Recall Philip’s challenge when the interview was about to begin.He notes he cannot control it and anxiety comes to play
Captain Deichler gave the example of his son exhibiting self-injurious behavior, but he stays back until it ends. Hands ononly makes it worse
General rule for a need to go hands on is if they are harmingothers, extreme property damage, or about to put themselvesin serious peril
That said, have others clear the scene and attempt to make theenvironment quiet and calming.
Remember, there is a strong relationship with anxiety andstress. Try to remove what is making the person anxious or
Virginia Law Enforcement DAT
stressed.
The debilitating force behind them all is the presence of excessive worry and fear – University of Amsterdam
With those that lack communication skills, the anxiety will often present with some form of behavior challenge. To that end, many who are verbal may not communicate what is making them anxious.
Developmental/Intellectual DisabilitiesVirginia Law Enforcement DAT
Developmental/Intellectual DisabilitiesVirginia Law Enforcement DAT
Developmental/Intellectual DisabilitiesVirginia Law Enforcement DAT
PLAY VIDEO:Listen to how the young man responds to the officer’s questions and his physical approach. Observe how long they still have him restrained, even after the caregiver arrives and explains his diagnoses.Utilize a caregiver, they will make the situation much easier on everyone involved. How could have this have been handled better?
Developmental/Intellectual DisabilitiesVirginia Law Enforcement DAT
Recognize:• You may see hand-flapping, finger flicking, rocking, arm
swinging, unusual gait or ambulationIdentify:
• Person avoids eye contact or squint, may be not verbalize or have odd noises, may appear disinterested or not paying attention to your conversing, be echolalic (repeat some or all of what you say),
Approach: • Calm, slow, minimize numbers of first responders, lights and
sirens turned off, Interaction
• Deliberate, comforting in demeanor and voice, give space, conversation may be off topic, concrete language (no slang), may have to repeat or rephrase, awareness of early warning signs
Developmental/Intellectual DisabilitiesVirginia Law Enforcement DAT
Response:• Touch as a last resort but be aware it may need to be utilized,
conscious individual may not recognize danger or risk (i.e. traffic, water), they could run or bolt from you/scene-on guard. Follow-up actions such as canvassing a neighborhood if a person elopes, parent support, guidance on programs such as Project Lifesaver, or tagging in 9-1-1 should be used as a follow-up.
Virginia Law Enforcement DAT Developmental/Intellectual Disabilities
CLICK AND READ SLIDEAfter he returned from orientation, she repeatedly began asking him to meet with her. He had no idea of how to handle her sexually aggressive messages, and he certainly didn’t foresee what would happen next. Like other people with autism and sensory issues, he can easily become overwhelmed and shut down, similar to a computer that has too many programs open at the same time. This is exactly what happened during her sexual advances. When his mind “rebooted” and his thought process reengaged, he told her to stop. She did and he took her home.That same evening the police came to his family’s house in the middle of the night. Since the front door is closest to the young man’s room, he answered it. Not understanding the situation and thinking the girl was in trouble because she was the aggressive one, he answered their questions before his father
Developmental/Intellectual DisabilitiesVirginia Law Enforcement DAT
got to the door. The police took him to jail for two days until his father could get him released on $100,000 bail.What his family did not find out until after the sentencing that due to the way the law was written, he would not only be on the sex offender registry, but he would be put on the violent sexual predator list for life. He can not visit out of state family, nor will it be possible for him to live in public housing because of his status. This has completely destroyed his life as he knew it.
Virginia Law Enforcement DAT Developmental/Intellectual Disabilities
Tourette Syndrome/Obsessive Compulsive Disorder Objectives:
Understanding how Tourette syndrome presents itself
Definition and explanation of the various forms of tics
Misperception and stigma
How to assist an individual and how to interact
Understanding Obsessive-Compulsive Disorder (OCD)
Main Points: One of the most misunderstood disabilities and when it manifests in public, individuals are exposed to scrutiny, sometimes intense. Coprolalia – the involuntary use of profanity, ethnic slurs, or sexual comments – tends to be the only trait people associate with TS, however, this is a misperception. Tics are the main feature, and there are many forms of them. Obsessive-Compulsive Disorder (OCD) exhibits similar characteristics to TS and can be mistaken for it.
Content:
Power point: 31 pages
Videos:o Susan Conners – President of Tourette Syndrome Association of
Greater New York State
o Ed Buckner – Chief Meteorologist KTHV - Little Rock
o
Tics – Dr. Joseph Jankovic, Baylor Universityo
Coprolalia
Handouts:o Facts about Tourette Syndromeo Tourette Syndrome info sheet
Inserts: Tourette Syndrome Association Law Enforcement Guide
Resources:
Tourette Syndrome of America (Mid-Atlantic Chapter): Phone: 443-327-9667: Website: https://www.tourette.org/chapter/mid-atl/
FFAACCTTSS AABBOOUUTT TTOOUURREETTTTEE SSYYNNDDRROOMMEE Answers to Most Commonly Asked Questions
What is Tourette Syndrome (TS)? It is a neurobiological disorder characterized by tics–involuntary, rapid, sudden movements and/or vocal outbursts that occur repeatedly. What are the most common symptoms? Symptoms change periodically in number, frequency, type and severity–even disappearing for weeks or months at a time. Commonly, motor tics may be eye blinking, head jerking, shoulder shrugging and facial grimacing. Vocally: throat clearing, sniffing and tongue clicking. What is the cause of the syndrome? No definite cause has yet been established, but considerable evidence points to abnormal metabolism of at least one brain chemical called dopamine. How many people are affected? As TS often goes undiagnosed, no exact figure can be given. But authoritative estimates indicate that some 200,000 in the United States are known to have the disorder. All races and ethnic groups are affected. Is it inherited? Genetic studies indicate that TS is inherited as a dominant gene, with about 50% chance of passing the gene from parent to child. Sons are three to four times more likely than daughters to exhibit TS. Is obscene language (coprolalia) a typical symptom of TS? Definitely not. The fact is that cursing, uttering obscenities, and ethnic slurs are manifested by fewer than 15% of people with TS. Too often, however, the media seize upon this symptom for its sensational effect. Do outbursts of personal, ethnic and other slurs by people with TS reflect their true feelings? On the contrary. The very rare use of ethnic slurs stems from an uncontrollable urge to voice the forbidden even when it is directly opposite to the actual beliefs of the person voicing it. How is TS diagnosed? Diagnosis is made by observing symptoms and evaluating the history of their onset. No blood analysis, X-ray or other type of medical test can identify this condition. The TS symptoms usually emerge between 5 and 18 years of age. How is it treated? While there is no cure, medications are available to help control TS symptoms. They range from atypical neuroleptics, to neuroleptics, to anti-hyperactive drugs, to anti-depressants. Individuals react differently to the various medications, and frequently it takes some time until the right substance and dosage for each person are achieved. Almost all of the medications prescribed for TS treatment do not have a specific FDA indication for the disorder. Is there a remission? Many people with TS get better, not worse, as they mature. In a small minority of cases symptoms remit completely in adulthood. Do TS children have special educational needs? As a group, children with TS have the same IQ range as the population at large. But problems in dealing with tics, often combined with attention deficits and other learning difficulties, may call for special education assistance. Examples of teaching strategies include: technical help such as tape recorders, typewriters or computers to assist reading and writing and access to tutoring in a resource room. Under federal law, an identification (“child with a disability”) under the other health impaired category may entitle the student to an Individual Education Plan. What future faces people with TS? In general people with TS lead productive lives and can anticipate a normal life span. Despite problems of varying severity, many reach high levels of achievement and number in their ranks as surgeons, psychiatrists, teachers, executives and professional musicians and athletes.
Tourette Syndrome Association 42-40 Bell Boulevard, Suite 205. Bayside, New York 11361 (718) 224-2999 fax: (718) 279-9596 http://tsa-usa.org email: [email protected]
HANDOUTS:
1. Facts about Tourette Syndrome
2. Tourette Syndrome information sheet
INSERT:
1. Tourette Syndrome Association Law Enforcement Guide
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These are the main points of this section. Read each one andnote you will be addressing each point individually.
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This question will be addressed throughout this sectionthrough video and explanation of symptoms.
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PLAY VIDEOWhat are her tics? Let audience identify:
Head snapFlick of the thumb on the chinJaws clamping (in black and white clip)
How was she diagnosed? Through a TV program, not adoctor. Doctors may be a player in diagnosis, but they cannotbe the sole source of information (as indicated by Susan’scomment).
Many people go undiagnosed.
She notes that it is hereditary.
TS is a neurological disorder, NOT a mental illness. It shouldnot call for the person to go in for a psychiatric evaluation.
Tics are the main symptom, either motor or vocal. TS isinvoluntary and not intentional. Misunderstanding leads tounnecessary arrests.
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Discuss the incident Susan mentions – the individual on thestreet corner who got arrested for “striking” an officer. Howmight the officer have dealt with it differently?
If suspect is “striking out” with his/her arm, move to oppositeside to see if the motion occurs on that side as well. If not,this is a good sign you are dealing with TS.
TS is often comorbid (exists with other disabilities) which canmake it hard to identify.
Obsessive-Compulsive Disorder (OCD)Learning Disability (LD)Attention Deficit Hyperactivity Disorder (ADHD)
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These tics are socially challenging and will drawattention that may involve a call to law enforcement.
CLICK FIRST BULLET
Vocal tics that involve inappropriate language such asswearing, sexual comments, or ethnic slurs, are notstandard with TS. They will, however, call for LEattention with more frequency.
CLICK SECOND BULLET
Someone talking out loud and using sexually explicitlanguage as a tic may very well render a 911 call.
Some motor tics may involve unintended, inappropriatetouching or contact. This is what deems it “complex.”
CLICK LAST BULLET
Some vocal tics like shouting or growling/howling, andmotor tics, like punching or kicking, could seemaggressive or frightening.
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Some neurological disorders noted by Susan werelearning disability, ADHD, and OCD.
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We will expand on OCD later in this section.
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Surrounding noises and certain places or venues can bea sensory overload for a person with TS. While they maycomprehend the situation at hand, it may be verychallenging for them.
Officers can alleviate some of the anxiety by minimizingdistractions and providing support.
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Low frustration tolerance may lead to difficult behaviorthat frightens others, initiating a call to police.
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Susan noted that medical professionals do not do agood job in diagnosing TS.
Misdiagnosis is generally mental illness. This isextremely detrimental and can cause many problemsfor the individual.
With this training, you may actually be identifying TSbefore anyone else has.
Many people with TS will be on medication which couldlead to undesirable side effects.
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As noted by Susan, TS is a neurological disorder that involvesmovement of the body or a vocalization.
The brain chemical is dopamine, of which there is anabnormal metabolism.
TS is genetic – if a parent has it, the likelihood of a child havingit is much greater.
We do not know how it is caused; therefore, treatment isdifficult.
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It is diagnosed more often in males than females, there is nomedical test (as of 2014) to determine diagnosis, and there isno cure.
It is hereditary, occurs in the brain, and, to date, its cause isunknown.
Diagnosed by specific criteria, including multiple tics, whichwe will review later in this section.
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The individual has NO control – the tic will happen repeatedlyand it will either be a motor movement or a vocalization.
Must have 2 or more tics in order to be diagnosed.
It is important for law enforcement to ignore the typical TSbehaviors, even the swearing and anger, and not to be drawnin to further confrontation.
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REFER TO “TS INFORMATION” HANDOUT
CLICK FIRST BULLET
Tics will increase as a result of stress, excitement and anxiety.With some individuals, this is the only time you may see theirtics.
If an officer is called to a scene s/he will more than likely seethe tics manifested and more present.
Recognizing and acknowledging that someone may have TScombined with a calming demeanor may alleviate much of thestress in a situation.
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Note there are 42 motor tics and 21 vocal tics. The HANDOUTin your manual breaks this down.
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PLAY VIDEO
Ask the audience: what are Ed’s tics? Shoulder/neck twitch,sniffing.
Ed discusses labeling and how it could have limited hispotential. He felt he benefitted from not knowing his exactdisability. The underlying point here is how he would bestigmatized because of his TS.
He also discusses how students with TS could be bullied at ahigher rate. Understand how this disability, and others, aremore prone to bullying.
He notes that it is a neurological disorder, which means it is adevelopmental disability.
He talks about the medications he took, however, he did notsee them as effective and actually brought on weight gain anddepression.
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Ed talks of his concern about a first responder notunderstanding that his tics are Tourette Syndrome, as opposedto something else. This misinterpretation, many times, has ledto inappropriate or unfortunate response.
Ed makes the point that increased stress manifests tics. Anencounter with a first responder would most likely be astressful or anxious situation.
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CLICK AND READ 4 CRITERIA
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READ EACH DEFINITION
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Here are some tics and what might be evident.
Reference video just watched to compare with thesecharacteristics:
Eye blinking and young man with Texas A&M t-shirtBoy walking and shrugging his shouldersSusan and head jerking
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Examples of some vocal tics:Simple vocalComplex vocal – repeating phrasesSpeech atypicalities – changing tone of voice, talkingwith an accent, or stuttering
Remind trainees that these are all involuntary.
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CLICK “ECHOLALIA”
Echolalia (ECKO-LAY-LEE-AH) is repeating something you’veheard. For example, you come on a scene and you say to anindividual, “Sir, what is your name?” and the individualresponds with, “Sir, what is your name?” it could also besomeone simply repeating a phrase that they have heard.
CLICK “PALILALIA”
Palilalia (PAL-IH-LAY-LEE-AH) is when one repeats one’s ownwords. An example of this is in the movie Good Fellas, Tommy“Two-Tones” is the guy that says, “Got the paper, got thepaper.”
With echolalia and palilalia, individuals are not looking to beobnoxious or a smart-aleck.
CLICK “COPROLALIA”
Coprolalia (COP-PRO-LAY-LEE-AH) is the most known and moststigmatizing vocal tic.
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Note statistic of only 15-20% of people with TS have coprolalia,however, it is the tic that most people identify with TS.Encourage empathy for people that experience this.
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Play Video: Note how it is not directed at anyone.Classmates must be aware as there is no indication fromanyone.There are other vocal tics present.
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Waxing and waning indicates that tics will not bepresent all the time.
How the tic occurs, when it occurs, its severity andintensity will vary over time.
Tics will occur much more frequently and be morepresent in children.
Tics will often diminish over time. With adults, they willsettle into a set pattern.
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Any call to 911 will probably involve the first three factors. We now have greater potential for the tics to manifest or worsen.
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Reference the Tourette Syndrome: Training for Law Enforcement guide
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PLAY VIDEO – have audience identify tics as they occur, prompt them to respond and indicate the tics if they fail to
Start comments with the last young man who has the snortingsound with the head thrust back, most will sympathize withthat. Discuss how he would be treated in school.
Discuss the rest of the tics seen in this video. Breakdown howan officer would respond, now that they know what to lookfor:
Boy with shoulder rollingGirl who made a bird sound and tried to suppress it –note how she attempted to swallow itBoy whose eyes rolled upBoy who punched head and slapped left thigh
Understand how tics present, and look to address them as thedisability they are. Again, TS should NOT be confused withmental illness, and misdiagnosis leads to improper treatmentand services.
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Ask the audience: Remember the two young ladiestowards the end both trying to “swallow” their tics?
In some situations, people may be able to temporarilysuppress their tics. This can happen through extremeeffort, which is exhausting and may lead to an explosionof symptoms.
A parent reported to the FRDAT office that her sonwould suppress in school all day then explode for mostof the night after he came home.
When someone with Tourette Syndrome isconcentrating very hard, is very distracted (such as whenplaying a video game), or is immersed in a rivetingmovie or TV show, it is also possible for tics to diminish.
Because of this, the uninformed believe that tics areunder the complete control of the individual, which, asalready stated, is a misperception.
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Other possible challenges a person with TS may experience.
It does not mean someone will have these issues, but mighthave them.
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Here are the comorbid disorders Susan referenced.
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Tics will be more apparent or pronounced whereas obsessionsmay be more subtle or behind closed doors.
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“Tics of the mind” refers to the uncontrollable component ofOCD. “I cannot control my compulsive behavior. Just as Icannot control my tic.”
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There is a misperception that something is “wrong” with aperson with OCD and his/her strange behaviors are thought tobe “crazy” or contagious. People shy away from them.
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Appearing “bad” is preferable due to the stigma attached tohaving a disability. You will see this with other hiddendisabilities as well.
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The obsession is so strong it disrupts everyday functioning,the compulsive response temporarily reduces the anxiety.
For example, an individual could be obsessed with germs sohe/she washes his/her hands 10 times, not 3 times. The 10times reduces anxiety temporarily.
Note how stress, excitement, and fatigue also bring on andexacerbate the behaviors associated with OCD.
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These are the most common obsessions one might have.
Simple breakdowns include a need to count/recount, checkingthings over, like seeing if the stove is on, washing hands,cleaning, and hoarding.
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Recognize:• Vocalizations and/or motor movements that will seem “odd”
or out of place with the reason you are there.Identify:• Tics maybe motor which will present as eye blinking, hitting
self, pulling at clothes, finger tapping, or hair tossing or vocalwhich will present as yelling, sniffing, barking, humming,coughing, or hissing
• Complex tics will present possible as movements that areslower and seem more purposeful
Approach:• Approach the person calmly• Keep in mind an individual may have other co-morbid
conditionsInteraction:• Indicate you recognize it maybe TS
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• Do not ask, tell or demand they stop• Calming presence and pleasant demeanorResponse:• Never view as a psychiatric disorder or a mental health
condition• No psychological evaluation is needed
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READ INCIDENT & DISCUSS
Ask what transpired here and what was wrong with how thisplayed out.
The officer, although informed the child has TouretteSyndrome, ignored this fact and saw his tics as a possiblemental illness.
A mistake made by many, except a trained officer should nowrecognize it as TS.
In this case, the officer, who had been informed of TS, shouldhave assisted the boy rather than put him through apsychiatric evaluation.
This led to the police chief getting involved, apologizing to themother, and discussion of a lawsuit.
Virginia Law Enforcement DAT
Epilepsy/Seizure Disorder
Objectives:
Defining epilepsy/seizure disorder
Understanding how and when a seizure may happen
Identifying the different types of seizures
Proper response when a seizure occurs
Reduce the risk of harm for both the individual and the officer
How an officer ensures dignity and respect for an individual having a seizure
Main points: Complex partial seizures may present as a drug-related incident or disorderly conduct. Some individuals have actually been arrested when they are simply experiencing a seizure. In one instance, an individual died from his seizure due to inappropriate response by an officer. Officers may be first on the scene and may need to be the one tending to the person having a seizure.
Content:
PowerPoint: 28 pages
Video:o Epilepsy Seizure Disorders
Handout:
o Seizure First Aid
Resources:
Epilepsy Foundation of Virginia: Phone: (434) 924-8669Website:https://www.epilepsy.com/Virginia
Epilepsy & Seizure Disorder
First Aid for a Tonic Clonic Seizure
Call 911 If: No Need to call 911 if: The seizure lasts more than 5 minutes You know the person has epilepsy and
First time seizure there are no signs of physical distress,
Another seizure starts shortly after one ends and, the seizure ends in under 5
The person is injured, pregnant, has diabetes minutes, and the consciousness
The seizure happens in water without further incident
Possible Seizure Triggers
Flashing Lights Missed Medication Fever or illness Drug Toxicity Stress
Fear/Anxiety Lack of sleep Hormones Fatigue Heat/Cold
Full bladder Constipation Low blood sugar Caffeine/Sugar Overeating
Hyperventilation
RECORD OF SEIZURE OBSERVATION What was the person doing before the seizure? ____________ Could something have triggered the seizure? ________
What happened during the seizure? _________________________ How long did the seizure last? ____________
Did the person loose bladder or bowel control? _________________ Did the eyes flutter, blink, or roll? ____________
Did the skin show changes (flushed, clammy, pale, blue? _____________________Could the person respond? _______
Was the person injured during the seizure? ______________________________ Did they remember anything? ______
What was the person like during the seizure (drowsy, confused, angry, unconscious)? _________________________
How did the person react after the seizure (alert, disoriented, sleepy, weak)? __________________________________
Did the person experience an aura or warning sensation that the seizure was coming? __________________________
1. Stay Calm
2. Protect the person from injury‐remove nearby objects
3. Place the person on their side 4. Find something soft to cushion their head
5. DO NOT PUT ANYTHING INTO THEIR MOUTH
6. Time the seizure‐If it lasts longer than 5 minutes, or the
person is injured call 911
Medical Conditions Other Than Epilepsy that Can Cause Seizures:
Diabetes‐Heat Exhaustion‐Hypoglycemia‐Fever, infections‐Head Injury‐Medication Interaction‐
Drug Overdose‐Pregnancy‐Poisoning
Epilepsy & Seizure Disorder
● Epilepsy/Seizure disorder is the tendency to have recurrent seizures. ● A seizure is a sudden disturbance in the electrical activity of the brain that results in a change of
consciousness, movement, behavior, speech or thinking
●One in one hundred people in the U.S. have epilepsy, and anyone can experience the onset of a seizure
disorder at any time.
●One in ten Americans will have one seizure in their lifetime.
●People with developmental disabilities such as cerebral palsy, intellectual disability and autism are at a
significantly higher risk for seizures. The likelihood of seizures increases with the severity of the disability.
●Status Epilep cus is a potentially dangerous medical emergency in which a person has a prolonged seizure
lasting more than 30 minutes. Any seizure that lasts over 5 minutes has the potential to be Status Epilepticus.
SEIZURE TYPES Generalized Tonic Clonic (Grand Mal) Generalized Absence (Petit Mal)
●Usually lasts 1‐3 minutes ●Blank stare las ng a few seconds
●Loss of consciousness ●Brief loss of awareness
●fall to the ground ●Can occur 200 mes a day
●body s ffens and shakes ●No loss of consciousness
●Possible loss of bladder or bowel ●Full awareness returns promptly
●Breathing slows, skin could look blue
●Consciousness returns in a few minutes Atonic (Drop Attack)
●Seizure can be followed by, sleepiness, muscle aches, ●Sudden loss of muscle tone
Confusion, which could last minutes or hours ●Consciousness loss 10‐60 seconds
●Causes person to fall
Focal Impaired (Complex Partial) Focal Aware (Simple Partial)
●Trance like stare, unaware of surroundings ●No loss of consciousness
●Random ac vi es such as, chewing, lip smacking ●Sensory, motor, or feeling of Deja Vu
●Last 2‐4 minutes ●Examples‐Hallucination, twitching, strong
●Uncontrollable movements such as picking , disrobing smells
●May run appear afraid ●Also called an aura
●May struggle at restraint ●Could come before larger seizure
●Post seizure confusion, no memory of seizure
◊ There are more types of seizures. These are the most common.
How to Help?
1. Understand what Epilepsy is
2. Have a plan of action in place
3. Know how to recognize, respond, and report
4. Offer support an acceptance
5. Be aware of local services available for people with epilepsy
HANDOUT – Seizure First Aid
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Anyone, for reasons we will share in the next slides, can have a seizure.
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Consciousness will be affected, usually severely.
All seizures have the same cause; a sudden change in how thecells in the brain send electrical signals to each other.
Depending on the seizure type, movement can be veryevident (convulsions) or nothing at all.
Behavior changes evident with all, but some may be hard todetect.
On the other hand, if someone suddenly begins to laugh, cry,or babble incoherently, it is possible they are having a seizure.
Perception (light, sound) at the moment of the seizure will behighly affected. People frequently report a feeling of déjà vu.
Odd sensations may come over the body.
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The biggest error LE makes when it comes to seizures is thatthey do not recognize them beyond a tonic-clonic seizure, orthe convulsing that occurs with such a seizure.
These are all indicators that will be exhibited depending onthe type of seizure.
An aura is a sensation or feeling that may come on prior to aseizure or it can stand alone without a seizure occurring.
Note how most of these do not occur with tonic-clonicseizures (convulsions).
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As noted, anyone can have a seizure and something has totrigger it to occur.
One person would not have all of these triggers, but here arethe most commonly occurring ones.
Flashing lights can trigger a seizure rather quickly, like strobelights on Halloween or your police car’s lights. If someonewere to inform you that this is a trigger, strongly considerturning them off.
People who have epilepsy know what their triggers are, andtry to stay away from them.
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This is a continuation of the previous slide.
Remember, you can have a seizure but not have epilepsy.
That said, many of these will also be associated withindividuals who have ongoing or recurrent seizure activity.
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In a perfect world, everyone would understand and recognizedifferent types of seizures. Education about the manydifferent types of seizures is needed.
People having complex partial seizures are oftenmisinterpreted as being drunk, drugged, or having a mentalillness.
An example of the last bullet relates to the “Arrested forEpilepsy” article discussed in the Introduction section.Reference that to drive this point home.
DO NOT RESTRAIN. Restraining someone could cause harm tothe individual or to the person trying to restrain them. Neverput anything in the person’s mouth.
Virginia Law Enforcement DAT
PLAY VIDEO
First woman is somewhat critical of how she is perceivedbecause she has seizures. This goes back to discussions aboutstigma, a feeling of not being included in society, loss ofinterpersonal relationships, and other perceptions that mayisolate an individual with any disability.
She states how people did not assist her and drives the pointhome at the end – proper response is pivotal.
It was stated some people can tell they may have a seizurecoming upon them – this is called an aura.
Officer in parking lot noted the subject did not flee, but wasnot responding to his requests. This told him something wasdifferent about the situation. The man was having a complexpartial seizure, which law enforcement tends to misinterpretas drug related behavior.
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Sometimes individuals will push whoever is in front of themaway. Determine it is a complex partial like Deputy Wilson did,and look to protect the person from harm. They will come outof it in a few minutes.
Tonic-Clonic, or grand mal (pronounced “grahn maw”), is themost common generalized seizure. The individual convulsesand will need assistance to avoid injury. Get them on theirside, do NOT put anything in their mouth, cushion their head,move objects out of the way, and minimize the crowd.Reference Seizure First Aid handout.
Recognize if an arrest is made that there may be medicationsthat need to be considered during processing – these are vitalto the person’s well-being and must be administered whileincarcerated. Death could occur if medications are notprovided.
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Febrile seizures are convulsions brought on by fever.
Poisoning by exposure to lead, pesticides, and carbonmonoxide have brought on seizures.
If an individual’s blood sugar level drops too rapidly, there isan increased risk of experiencing a seizure.
Overdose of medication, alcohol, or illegal drugs are commoncauses of seizures, seen most often in emergency rooms.
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An individual who has more than two seizures would then bediagnosed with epilepsy.
When someone has epilepsy they are most likely aware oftheir condition – they may know their triggers, the duration oftheir seizures, might have a medical alert bracelet, and mayeven sense (aura) when a seizure is coming on.
Conversely, the seizures we just reviewed could be new to theperson, and would require more attention including a trip tothe hospital.
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Generalized seizures are more involved, affecting the entirebrain. An example would be a tonic-clonic seizure, wheresomeone is both convulsing and unconscious.
Focal seizures are less involved, affecting only part of thebrain. An example would be a complex partial seizure, wherethe person is still on his/her feet but unaware of their actions.
In 2017, the term partial seizure was changed to focal
Some people’s seizures are longer or shorter than the averagetime.
People can have multiple types of seizures.
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This seizure, also known as Grand Mal, is the seizure that ismost dramatic to witness and most easily identified as being aseizure.
911 would be called for this type of seizure if:It is the person’s first seizureIt lasts more than 5 minutesThe person sustains an injuryThe person is pregnant
In essence, 911 will not be called for every seizure.
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This is a continuation of the previous slide.
All or some of these may occur. If tended to properly, it is nota life threatening situation, however, some of these maycause people who are not familiar with seizures to overreact.
The postictal state is the period of time after a seizurewhereby the individual is gaining full consciousness andability to function.
It is important to ask the individual to answer simplequestions to assess awareness: date, season, does he/sheknow where they are?
Depending on the individual, the postictal state can last a fewminutes or up to a few hours, maybe even a full day. Theindividual’s ability to return to everyday activities will becompromised.
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The Tonic-Clonic seizure is the type that needs the mostattention. You will need to enact these measures to ensurethe person’s safety and well-being throughout their seizure.
Timing the seizure is very important. If the seizure lasts longerthan 5 minutes, there will be a need for enhanced medicalattention.
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A person who has epilepsy and takes medication, s/he will notneed to go to the hospital, unless otherwise indicated.
Standard protocol, to include staying with the person untilthey’re coherent, should be implemented.
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All of these matters would call for immediate attention fromEMS.
If a seizure goes on for over 5 minutes, the person could be inStatus Epilepticus, which is a prolonged seizure that requiresthe medication Diastat to be administered rectally for it tostop. If a person is in Status Epilepticus for a long time theycould experience brain damage or die.
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Generalized Absence seizures, also know as Petit Mal(pronounced “petty maw”), are easily mistaken fordaydreaming. The person can be talking to you, then allof a sudden stops and stares. This only lasts for 5-30seconds.
People have been misidentified as having behaviorproblems, ADD, or learning disabilities.
Think of how much you would miss if you were unableto hear and communicate for 5-30 seconds 200 times aday.
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Another name for an atonic seizure is a “Drop Attack.”The person loses all muscle tone for a short period oftime.
When you lose all muscle tone, you just slump to thefloor or fall over. This can happen multiple times.
This type of seizure often results in injury to the faceand head. Individuals who experience frequent atonicseizures often wear helmets to prevent such injuries.
Atonic seizures will also have a postictal state.
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Focal Impaired seizures are the most common type and themost misinterpreted.
These seizures may mimic psychiatric problems, intoxicationand drug overdose.
On rare occasions, an individual may disrobe, urinate, scream,or run around flailing his/her arms. Some individuals appearafraid and cry out while others perform automated tasks suchas pouring coffee, dealing cards or walking down stairs.
Although the individual appears to be conscious, s/he is NOTaware of what is going on around them nor will s/he be ableto obey police commands or follow instructions.
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This is a continuation from the previous slide.
While a seizure may come to an end, there is still going to be aneed to ensure the person’s safety and well-being. There willbe a postictal state with this seizure as well, but it won’t be asextensive as in a tonic-clonic seizure.
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CLICK AND READ 4 BULLETS
You, or another first responder, should stay with the personuntil he/she is completely aware.
Remember, their behavior is non-directed.
Avoid physical contact, but if necessary, speak calmly andapproach slowly from side. Do not restrict the individual’smovements unless necessary to prevent injury.
The seizure may be over within 2-3 minutes, but, again, thepostictal confusion may last awhile.
If the individual does not return to full awareness orexperiences a second seizure, he/she should be transportedto a medical facility for further evaluation.
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CLICK AND READ 5 BULLETS
Individuals experiencing focal aware (simple partial) seizuresdo not lose consciousness nor experience an altered state ofconsciousness. They remain awake and aware throughout theseizure.
A focal aware seizure is basically a more enhanced aura.
Feelings of déjà vu, twitching of a foot, sudden feelings ofoverwhelming fear or joy, can be a simple partial seizure.
Remember, anything the brain can do normally, it can doabnormally as part of the seizure. Individuals experiencingfocal aware seizures rarely require first aid.
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CLICK AND READ 4 BULLETS
You, or another first responder, should stay with the personuntil he/she is completely aware.
Remember, their behavior is non-directed.
Avoid physical contact, but if necessary, speak calmly andapproach slowly from side. Do not restrict the individual’smovements unless necessary to prevent injury.
The seizure may be over within 2-3 minutes, but, again, thepostictal confusion may last awhile.
If the individual does not return to full awareness orexperiences a second seizure, he/she should be transportedto a medical facility for further evaluation.
Virginia Law Enforcement DAT
CLICK AND READ 5 BULLETS
Individuals experiencing simple partial seizures do not loseconsciousness nor experience an altered state ofconsciousness. They remain awake and aware throughout theseizure.
A simple partial seizure is basically a more enhanced aura.
Feelings of déjà vu, twitching of a foot, sudden feelings ofoverwhelming fear or joy, can be a simple partial seizure.
Remember, anything the brain can do normally, it can doabnormally as part of the seizure. Individuals experiencingsimple partial seizures rarely require first aid.
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CLICK AND READ 2 PARAGRAPHS
This continues on the next page.
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Recognize:Looking confused, staring and doing repetitive actionsLip smacking, pulling or picking at clothesLack of response and no attempt at fleeing
Identify:Tonic-Clonic- May fall to the ground and body will be jerkingFocal (complex)-Unresponsive state
Approach:Be calm and comforting
Interaction:Remember that their consciousness will be alteredDO NOT RESTRAINMake sure the area around the person is safe; deter themfrom going into traffic, water or towards slopes or hills ifhaving a focal seizure.Reference Seizure First aid protocol for tonic-clonic
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Response:Stay with the person during post-ictal state until someone theyknow comes along. This may take timeFor most, NO need to go to the ER/HospitalIf it is longer the 5 minutes or there is a injury; EMS will takeover.
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CLICK AND READ 2 PARAGRAPHS
This case shows how complex partial seizures can bemisunderstood. The officers did not recognize that Mr. M.was having a seizure, resulting in an unnecessary arrest andtrial. That said, his conduct was not appropriate for acommunity setting. Discuss all aspects of this with theaudience.
Many people with epilepsy wear a Medic Alert bracelet. It isimportant for the first responder to check for medical alertidentification as part of the assessment process. In this case,emphasize to Mr. M. that because his actions would prompt acall to 911, it would be in his best interests to get a bracelet.
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CLICK AND READ PARAGRAPH
Situations like this case can be prevented from going this far if the individual has proper identification and the officer is properly trained to recognize and identify epilepsy/seizure disorders.
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Physical Disabilities Objectives:
Defining the various types of physical and mobility disabilities
Respect and dignity when responding to an individual using a wheelchair
Understanding Durable Medical Equipment (DME)
Main points: Individuals with physical disabilities will have ambulatory or mobility challenges and may have upper extremity (arms, upper body) limitations as well. They are vulnerable to perpetrators. For the most part, they do not have cognitive or intellectual limitations. Some physical disabilities may pose speech challenges for certain individuals. It is important to understand how to properly interact so as to ensure mutual respect. An officer may need to know the basics of how DME operates.
Content:
PowerPoint: 15 pages
Videos:o Adam Page- Man with Spina Bifidao Dispelling the Myths of Cerebral Palsyo Persons with Physical Disabilities and First Responderso DME Troubleshooting
Handouts:o Basic Etiquette – People with Mobility Impairmentso Cerebral Palsy Fact Sheeto Spina Bifida
Resources:
Cerebral Palsy: www.ucp.org
National Spina Bifida Association :www.spinabifidaassociation.org
National Multiple Sclerosis Society: Virginia Chapter: Phone: 804-353-5595:Website: http://www.MSVirginia.org
Basic Etiquette: People with Mobility Impairments
1. My Chair, My Body - Wheelchairs are NOT footstools, stepladders, or fire hazards. People
who use a wheelchair, walker, or cane often consider this technology to be an extension of
their body. They are part of an individual’s personal space and should be treated with the
same dignity and respect. Do not lean on them, push them, or move them without explicit
permission.
2. Talk face to face. If an individual uses a wheelchair, sit down and/or position yourself at the
same eye contact level.
3. Always ask if you can offer assistance BEFORE you provide assistance. If your offer is
accepted, ask for instructions and follow them.
4. When given permission to push a wheelchair, push slowly at first. Wheelchairs can pick up
momentum quickly.
5. Personally check locations of events for accessibility. Use a checklist (such as those found in
Section 3). If barriers cannot be removed, alert persons with mobility impairments before the
event so that they can make decisions and plan ahead.
6. Do not ask people how they acquired their disability, how they feel about it, or other personal
questions unless it is clear that they want to discuss it. It is not their job to educate you.
7. It is considered patronizing to pat an individual who uses a wheelchair on the back or on the
head.
8. Remember that, in general, persons with mobility impairments are not deaf, visually
impaired, or cognitively impaired. The only accommodations that you need to make are those
that relate to mobility impairment.
Resources
National Institute of Neurological Disorders and Stroke (NINDS) Office of Communications and Public Liaison
Bethesda, MD 20892
Voice: (301) 496-5751; (800) 352-9424
Fax: (301) 402-2186
Web site: www.ninds.nih.gov
National Spinal Cord Injury Association 6701 Democracy Blvd.
Suite 300, #300-9
Silver Spring, MD 20910
Voice: (800) 962-9629; (301) 588-6959
Fax: (301) 588-9414
E-mail: [email protected]
Web site: www.spinalcord.org
Reprinted with permission from the National Center on Workforce and Disability, Institute for
Community Inclusion, University of Massachusetts Boston.
Spina Bifida
© Mayo Foundation for Medical Education and Research. All rights reserved.
DEFINITION Spina bifida is part of a group of birth defects called neural tube defects. The neural tube is the
embryonic structure that eventually develops into the baby's brain and spinal cord and the tissues that
enclose them.
Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In
babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects
in the spinal cord and in the bones of the backbone.
Spina bifida occurs in various forms of severity. When treatment for spina bifida is necessary, it's done
through surgery, although such treatment doesn't always completely resolve the problem.
(Source: Reprinted from the MayoClinic.com article "Spina bifida: Definition” http://www.mayoclinic.com/health/spina-
bifida/DS00417)
SYMPTOMS Spina bifida occurs in three forms, each varying in severity:
Spina bifida occulta
This mildest form results in a small separation or gap in one or more of the bones (vertebrae) of the
spine. Because the spinal nerves usually aren't involved, most children with this form of spina bifida
have no signs or symptoms and experience no neurological problems. Visible indications of spina bifida
occulta can sometimes be seen on the newborn's skin above the spinal defect, including:
An abnormal tuft of hair
A collection of fat
A small dimple or a birthmark
Skin discoloration
Many people who have spina bifida occulta don't even know it, unless the condition is discovered during
an X-ray or other imaging test done for unrelated reasons.
Meningocele
In this rare form, the protective membranes around the spinal cord (meninges) push out through the
opening in the vertebrae. Because the spinal cord develops normally, these membranes can be removed
by surgery with little or no damage to nerve pathways.
Myelomeningocele
Also known as open spina bifida, myelomeningocele is the most severe form — and the form people
usually mean when they use the term "spina bifida."
In myelomeningocele, the baby's spinal canal remains open along several vertebrae in the lower or
middle back. Because of this opening, both the membranes and the spinal cord protrude at birth,
forming a sac on the baby's back. In some cases, skin covers the sac. Usually, however, tissues and
nerves are exposed, making the baby prone to life-threatening infections.
Spina Bifida
© Mayo Foundation for Medical Education and Research. All rights reserved.
Neurological impairment is common, including:
Muscle weakness, sometimes involving paralysis
Bowel and bladder problems
Seizures, especially if the child requires a shunt
Orthopedic problems — such as deformed feet, uneven hips and a curved spine (scoliosis)
(Source: Reprinted from the MayoClinic.com article " Spina bifida: Symptoms” http://www.mayoclinic.com/health/spina-
bifida/DS00417/DSECTION=symptoms)
CAUSES Doctors aren't certain what causes spina bifida. As with many other problems, it appears to result from a
combination of genetic and environmental risk factors, such as a family history of neural tube defects
and folic acid deficiency.
(Source: Reprinted from the MayoClinic.com article " Spina bifida: Causes” http://www.mayoclinic.com/health/spina-
bifida/DS00417/DSECTION=causes)
RISK FACTORS Although doctors and researchers don't know for sure why spina bifida occurs, they have identified a
few risk factors:
Race. Spina bifida is more common among whites and Hispanics.
Family history of neural tube defects. Couples who've had one child with a neural tube defect
have a slightly higher chance of having another baby with the same defect. That risk increases if
two previous children have been affected by the condition. In addition, a woman who was born
with a neural tube defect, or who has a close relative with one, has a greater chance of giving
birth to a child with spina bifida. However, most babies with spina bifida are born to parents
with no known family history of the condition.
Folate deficiency. Folate (vitamin B-9) is important to the healthy development of a baby. Folate
is the natural form of vitamin B-9. The synthetic form, found in supplements and fortified foods,
is called folic acid. A folate deficiency increases the risk of spina bifida and other neural tube
defects.
Some medications. Anti-seizure medications, such as valproic acid (Depakene, Stavzor), seem to
cause neural tube defects when taken during pregnancy, perhaps because they interfere with
the body's ability to use folate and folic acid.
Diabetes. Women with diabetes who don't control their blood sugar well have a higher risk of
having a baby with spina bifida.
Obesity. Pre-pregnancy obesity is associated with an increased risk of neural tube birth defects,
including spina bifida.
Increased body temperature. Some evidence suggests that increased body temperature
(hyperthermia) in the early weeks of pregnancy may increase the risk of spina bifida. Elevating
your core body temperature due to fever or the use of saunas or hot tubs, has been associated
with increased risk of spina bifida.
Spina Bifida
© Mayo Foundation for Medical Education and Research. All rights reserved.
If you have known risk factors for spina bifida, talk with your doctor to determine if you need a larger
dose or prescription dose of folic acid, even before a pregnancy begins. If you take medications, tell your
doctor. Some medications can be adjusted to diminish the potential risk of spina bifida, if plans are
made ahead of time.
(Source: Reprinted from the MayoClinic.com article " Spina bifida: Risk Factors” http://www.mayoclinic.com/health/spina-
bifida/DS00417/DSECTION=risk-factors)
COMPLICATIONS Spina bifida may cause no symptoms or only minor physical disabilities. Frequently, it leads to severe
physical and mental disabilities.
Factors that affect severity
The severity of the condition is affected by:
The size and location of the neural tube defect
Whether skin covers the affected area
Which spinal nerves come out of the affected area of the spinal cord
Range of complications
Complications may include:
Physical and neurological problems. This may include lack of normal bowel and bladder control
and partial or complete paralysis of the legs. Children and adults with this form of spina bifida
might need crutches, braces or wheelchairs to help them get around, depending on the size of
the opening in the spine and the care received after birth.
Accumulation of fluid in the brain (hydrocephalus). Babies born with myelomeningocele also
commonly experience accumulation of fluid in the brain, a condition known as hydrocephalus.
Most babies with myelomeningocele will need a ventricular shunt — a surgically placed tube
that allows fluid in the brain to drain as needed into the abdomen. This tube might be placed
just after birth, during the surgery to close the sac on the lower back, or later as fluid
accumulates.
Infection in the tissues surrounding the brain (meningitis). Some babies with myelomeningocele
may develop meningitis, an infection in the tissues surrounding the brain, which may cause
brain injury and can be life-threatening.
Other complications. Additional problems may arise as children with spina bifida get older.
Children with myelomeningocele may develop learning disabilities, including difficulty paying
attention, problems with language and reading comprehension, and trouble learning math.
Children with spina bifida may also experience latex allergies, skin problems, urinary tract
infections, gastrointestinal disorders and depression.
(Source: Reprinted from the MayoClinic.com article " Spina bifida: Complications” http://www.mayoclinic.com/health/spina-
bifida/DS00417/DSECTION=complications)
HANDOUTS:1. Basic Etiquette: Mobility Impairments2. Cerebral Palsy3. Spina Bifida
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CLICK AND READ 3 BULLETS
Specifically identifying which physical disability someone hasis almost unimportant unless the disability affects your abilityto communicate with the subject. However, beingknowledgeable about various disabilities will make yourinteractions much simpler.
Upper extremities are any arm or hand limitations to includeamputation, prosthetic hands or arms, or birth anomaly.
Most people with physical disabilities do not have cognitivedisabilities or cognitive delays.
Some people with physical disabilities have some difficultycommunicating, may speak slowly, or require you to speakslowly, so that they can respond to you in a timely fashion.
Be aware this may require you to pause in the middle of asentence in order for someone to respond. Short sentences
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work best.
Spina bifida can range from mild to severe.Some people may have little to no disability.Other people may be limited in the way they move or function.Some people may even be paralyzed or unable to walk or moveparts of their body.Characteristics can include
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Adam has undergone 10 surgeries to treat his spina bifidaAdam built an impressive list of athletic accomplishments,making his first Paralympic Team in 2010.He also co-founded the Sled Hockey Foundation, a non-profitorganization that provides individuals with physical disabilitiesthe opportunity to take part in Para ice hockeyHe is a three-time Olympic Gold Medalist and the USA all-timeleading goal scorer.
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Caused by brain damage prior (80%), during (10% or less), orright after birth (10% or less) (Paralysis Resource Center).
30-50% of individuals with CP will have an intellectual orlearning disability.
CLICK “SPASTICITY”
Most common form (about 70%) of cerebral palsy is spasticity(Paralysis Resource Center).
This is indicated by rigidity in the upper (arms) or lower (legs)extremities.
It is difficult for some to use their arms and hands in a fluentmanner due to increased muscle tone, wherein musclescontinually contract, making limbs stiff, rigid, and resistant toflexing or relaxing.
Examples of challenges would be using a fork to get at food,bringing hands together to clap, scratching an itch.
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CLICK “ATHETOID”
An individual with Athetoid CP is frequently unable to controltheir muscles. You will see individuals with strapped downarms or legs.
CLICK “ATAXIA”
Ataxia indicates someone who may be ambulating, butbalance looks difficult and they may look like they are going tofall.
Many of these individuals will be able to drive a car and walkwithout support, but unsteady gait will be noticeable
CLICK HEMI, DI, & QUADRIPLEGIA BULLETS
While hemiplegia, diplegia, and quadriplegia are not exclusiveto CP, these terms describe which upper or lower extremitiesmay be affected.
CLICK AND READ LAST BULLET
Note there is also a spike in CP. Most common cause ispremature birth. Report by Center for Disease Control (CDC)shows approximately 1 in 303 births.
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PLAY VIDEO
Do not view any disability as being standard across all whohave it.
As you can see, people with cerebral palsy have a wide rangeof abilities. This is also the case for people with MS, MD, ALSand so on.
Jen notes to pull up a chair to get to eye level
Please be sure to enforce the abuse of accessible parkingspots by those who do not have a permit
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CLICK AND READ FIRST BULLET
This is stressed because of the misperception that all IWDshave a cognitive disability. As a result, we then talk down tothem or do not include them in conversation at all.
CLICK AND READ SECOND BULLET
Frisking will be expanded upon in the upcoming video.
CLICK AND READ THIRD BULLET
It is okay to ask if someone can stand or get out of their chair.
Only in dire situations do you separate the individual from thechair.
If the person goes in an ambulance, police should secure thechair and get it to the hospital or the station for safe keeping.These are very expensive items and are not easily replaceable.
Establish a relationship with local accessible transportationcompanies that serve individuals who use wheelchairs (i.e.
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ADA Roadside Assistance, ParaTransit).
CLICK AND READ FOURTH BULLET
If a conversation will go on for any length of time, pull up achair, take a knee, or find another way to get to eye level.
CLICK AND READ FIFTH BULLET
Be careful of your back and listen to what was said aboutasking the person the best way to lift and transfer.
CLICK AND READ SIXTH BULLET
Some individuals have speech challenges – especially true forindividuals with cerebral palsy. This will call for patience aswords may not flow and there may be the need to ask theindividual to repeat what they said.
Okay to ask for an individual to repeat (not considered rude).You may want to indicate what part of the sentence youunderstood. For instance, “The person was wearing whatcolor jacket?”
CLICK AND READ LAST BULLET
There have been at least three arrests of individuals who havecerebral palsy that were thought to be intoxicated when theirphysical impairment included a shambling walk or slurredspeech.
People who have MS, Myasthenia Gravis, Parkinson’s diseaseand early stage ALS, as well as a few other conditions, mayalso appear or sound drunk.
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PLAY VIDEO
Assistive technology and adaptive equipment allows forfreedom and mobility.
Ask if anyone has seen an adapted vehicle/van.
You can have limited use of arms and legs and still drive amotor vehicle. In effect, you can have no arms or legs anddrive a motor vehicle.
Statement that people are NOT wheelchair “bound” or“confined” to a wheelchair. These statements areinappropriate. An individual uses a wheelchair.
We do not describe individuals as “wheelchairs,” for example,“where does the wheelchair go,” when referring to a personwho is using one.
Process of personal consent and communication should notbe altered based on physical disability.
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People tend to “feel sorry” for the person who uses awheelchair, with the thought their quality of life is negativelyaffected. This is a misconception and leads to disrespect.Individuals should be viewed as equals.
Ask the audience: What did the officer do to the wheelchair?How did he handle it? He handled it with perfection. Heapproached the woman with respect, asked her what neededto be done, and was able to release her from what would havebeen a very difficult situation (she was stuck and could not exitthe vehicle) if he had not arrived to assist.
Who is responsible to secure the chair in an emergency? Youare as an officer.
Say an individual is transported to a hospital and thewheelchair is left behind, the officer must secure it.Is there a relationship with a transportation companythat would come and transport the chair?As noted, the value is more than monetary and anindividual’s total independence is affected.Wheelchairs are custom-made and cost may beprohibitive if it is damaged beyond repair.It is not like a car where there are parts ready to replacea piece if necessary.
Are there protocols at 911? Sometimes it may be quickthinking that leads to creative solutions.
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CLICK TWICE AND READ SLIDE – discuss with audience
Okay to ask if someone has a disability, or even to name aspecific disability if you think you know what it is. Beingspecific to the disability goes much farther in the credibility ofyour knowledge.
If you suspect he could be drinking, there are still standardways a person with spasticity or ataxia should respond tocertain requests. For instance, if he does not know answers tobasic questions or what pocket his wallet is in.
You do not want to put yourself in a position where you are“questioning the cerebral palsy.” As mentioned, we are awareof at least three wrongful DWI arrests of individuals with CP.
Reference “Pulling Over Someone With CP” video onfrdat.niagara.edu.
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CLICK AND READ 4 BULLETS
Description of how and why someone might obtain DME, aswell as its main intention, which is repeated use.
Elaborate DME, such as power wheelchair, is extremelyexpensive. Many people are only able to get DME throughMedicaid/Medicare.
Recall the video you recently watched that describes severalDME items and what their function is.
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CLICK AND READ 2 BULLETS
On the rare occasion where such equipment is left behind(extreme urgency, inability to communicate before transport,etc.) this equipment must be secured or given for safekeepingto another party who knows the subject.
Virtually all DME is extremely expensive (hard to replace) andabsolutely essential to the independence of the subject.
It is the expectation that the officer would secure the chairjust like you would secure other personal belongings. Thismay mean contacting a bus company or service provider whohas the capability to transfer it.
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PLAY VIDEO
Scooter demonstration highlights operation of this product,emphasis on disengaging.
Wheelchairs are more involved but not to any great extent.Recall Rochester PD sergeant who pushed lever to get chairengaged.
MUST disengage in order to push a power wheelchair. Chairsweigh about 400 pounds. Lifting chairs with people in them isnot recommended nor is it considered appropriate.
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Click and Read as the information appears on the slide:Recognize:
The individual will be using a wheelchair or have a slow or unsteady gait. Possibly a slight foot drag or a extra step.
Identify:For Law Enforcement it will not be significant for you to know the specific physical disability
Approach:• Always approach from the front
Interaction:• Make sure you are eye level with the person• Disengage the wheelchair if needed• Always ask the person before you touch or move their
wheelchair• Speak to the person age appropriately• Individuals may have a speech disability. If so, utilize proper
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communication techniques.
PLEASE NOTE: The slide will look “messy” not in slide show mode. Please leave as is, to ensure the animations and information are presented correctly.
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Person First Language, Communication and Other Topics
Objectives:
Learn what language and verbiage is appropriate
Understand that some terminology is not only archaic but offensive
Understanding speech and communication challenges
Learn more about the prevalence of victimization in the population
Referencing NU FRDAT for resources and information
Main points: The initial interaction is critical to establishing proper rapport with an individual with a disability. That starts with how we address the person and what to say and not say. Many words and terms used today are no longer appropriate. Proper language, known as Person First language, goes a long way to gaining trust and comfort with an IWD. A breakdown of speech challenges so as to understand how they present and what is proper response. Officers should also know that 50-80% of an their day will be interactions with individuals with disabilities, muchof that will be relative to victimization.
Content: PowerPoint: 14 pages
• Handout:
o Basic Etiquette – Speech Impairmentso Words with Dignity
Insert: People First GuideResources:
American Speech, Language, Hearing Association (ASHA) :“The Language Used
to Describe Individuals With Disabilities”:
www.asha.org/publications/journals/submissions/person_first.htm
Wheelchair.com:“People First Language: I Am Not My Wheelchair”:
www.1800wheelchair.com/news/post/people-first-language-i-am-not-my-
wheelchair.aspx
The Arc :“What is People First Language?”:
www.thearc.org/page.aspx?pid=2523
Videos:•o Victims and Police Response
Basic Etiquette: People with Speech Impairments
1. Take your time, relax, and listen.
o With a little time and patience, you can comfortably converse with a person who has a
communication disability.
o Don’t try to rush the conversation or second-guess what a person has to say.
o Plan for a conversation with a person with impaired speech to take longer.
2. It’s okay to say, I don’t understand.
3. Solicit and provide feedback. If necessary, repeat your understanding of the message in order to
clarify or confirm what the person said.
4. Do not ignore a person with a speech impairment because of your concern that you will not
understand them.
5. Do not pretend you understand what is being said if you do not. Instead, repeat what you have
understood and allow the person to respond. The response will clue you in and guide your
understanding.
6. Do not interrupt a person with a speech impairment. Be patient and wait for the person to finish,
rather than correcting or speaking for the person.
7. If necessary, ask short questions that can be answered with a few words, a nod, or a shake of the head.
8. Face the individual and maintain eye contact. Give the conversation your full attention.
9. If the individual is accompanied by another individual, do not address questions, comments, or
concerns to the companion.
10. Do not assume that a person with a speech impairment is incapable of understanding you.
11. Some people with speech impairments have difficulty with inflections. Do not make assumptions
based on facial expressions or vocal inflections unless you know the individual very well.
12. Do not play with or try to use someone’s communication device. Such aids are considered an
extension of an individual’s personal space and should be respected as such.
13. If you are having trouble communicating, ask if an individual can write the message or use a
computer or TTY.
Resources American Speech-Language-Hearing Association (ASHA) 10801 Rockville Pike
Rockville, MD 20852
Voice/TTY: (800) 638-8255; (301) 897-5700
E-mail: [email protected]
Web site: www.asha.org
Stuttering Foundation of America 3100 Walnut Grove Road #603
P.O. Box 11749
Memphis, TN 38111
Voice: (800) 992-9392; (901) 452-7343
Fax: (901) 452-3931
E-mail: [email protected]
Web site: www.stuttersfa.org
Reprinted with permission from the National Center on Workforce and Disability, Institute for
Community Inclusion, University of Massachusetts Boston.
USE: Person with a disability, disabledNOT: Cripple, handicapped, handicap, invalid (literally means “not valid”)
USE: Person who has, person with (e.g., person who has cerebral palsy)NOT: Victim, afflicted with (e.g., victim of cerebral palsy)
USE: Uses a wheelchairNOT: Restricted or confined to a wheelchair, wheelchair bound
USE: Nondisabled or able-bodiedNOT: Normal (referring to nondisabled persons as “normal” insinuates that people with disabilities are abnormal)
USE: Deaf, Hard of Hearing NOT: Deaf-mute, Deaf and dumb
USE: Disabled since birth, born withNOT: Birth defect
USE: Psychiatric history, psychiatric disability, emotional disorder, mental illness, consumer of mental health servicesNOT: Crazy, insane, mental patient, wacko, a lunatic, a psychotic, a schizophrenic
USE: Epilepsy, seizuresNOT: Fits
USE: Learning disability, intellectual disability, developmental disability, cognitive disability, ADD/ADHDNOT: Mental retardation, slow, retarded, lazy, stupid, underachiever
abnormalburdenconditiondeformeddifferently ableddisfigured
handicapableincapacitatedimbecilemanicmaimedmadman
moronpalsiedpatheticphysically challengedpitifulretard
spasticstricken withsuffertragedyunfortunatevictim
When you use Words with Dignity, you encourage equality for everyone. If you’re in doubt, use people first language (e.g., “a person with a disability”; not “a disabled person”).
5240 Oakland Avenue | Saint Louis, MO 63110 | (314) 289-4200 | www.paraquad.org
WORDS WITH DIGNITY
Other terms that should be avoided because they have negative connotations and tend to evoke pity and fear:
Blind (no visual capability)Legally blind, low vision (some visual capability)Hearing loss, Hard of Hearing (some hearing capability)Hemiplegia (paralysis of one side of the body)
Paraplegia (loss of function in the lower body only)Quadriplegia (paralysis of both arms and legs)Residual limb (post-amputation of a limb)
Preferred terms to use when discussing disabilities
To learn more about disability awareness or to schedule a guest speaker, visit www.paraquad.org.
Disability etiquetteMake reference to the person first, then the disability. Say “a person with a disability” rather than “a disabled person.”
Avoid the word “handicapped” in any use. The word comes from the image of a person standing on the corner with a cap in hand begging for money. People with disabilities do not want to be the recipients of charity or pity. They want to participate equally with the rest of the community. A disability is a functional limitation that interferes with a person’s ability to walk, hear, talk, learn, etc.
If the disability isn’t relevant to the story or conversation, don’t mention it.
Remember: A person who has a disability isn’t necessarily chronically sick or unhealthy. He or she is often just disabled.
A person is not a condition, so avoid describing a person as such. Don’t present someone as “an epileptic” or “a post-polio.” Instead, say “a person with epilepsy” or “a person who has had polio.”
Basic guidelines
Don’t feel obligated to act as a caregiver to people with disabilities. Ask if help is needed, but always wait until your offer is accepted. Listen to any instructions the person may have.
Leaning on a person’s wheelchair is similar to leaning or hanging on a person. It is considered annoying and rude. The chair is part of a person’s personal body space. Don’t hang on it.
Share the same social courtesies with people with disabilities that you would share with someone else. If you shake hands with people you meet, offer your hand to everyone you meet, regardless of disability. If the person is unable to shake your hand, he or she will tell you.
When offering assistance to a person with a visual impairment, allow that person to take your arm. This will enable you to guide, rather than propel or lead the person. Use specific directions, such as “left in 100 feet” or “right in two yards” when directing a person with a visual impairment.
When planning events that involve persons with disabilities, consider their needs before choosing a location. Even if people with disabilities will not attend, select an accessible spot. You wouldn’t think of holding an event where other minorities could not attend, so don’t exclude people with disabilities.
Common courtesies
When speaking about people with disabilities, emphasize achievements, abilities and individual qualities. Portray them as they are in real life: parents, employees, business owners, etc.
When talking to a person who has a physical disability or a developmental disability, speak directly to that person. Don’t speak to that person through a companion or refer to him or her in the third person while in his or her presence. For people who communicate through sign language, speak to them, not to the interpreter.
Relax. Don’t be embarrassed if you use common expressions such as “see you later” or “gotta run.”
To get the attention of a person who has a hearing loss, tap them on the shoulder or wave. Look directly at the person and speak clearly, slowly and expressively to establish if they read lips. Not all people with hearing loss can read lips. Those who do rely on facial expressions and body language for understanding. Stay in the light and keep food, hands and other objects away from your mouth. Shouting won’t help; written notes will. Use an interpreter if possible.
When talking to a person in a wheelchair for more than a few minutes, place yourself at eye level with that person. This will spare both of you a sore neck.
When greeting a person with a severe loss of vision, always identify yourself and others. For example, say, “On my right is John Smith.” Remember to identify persons to whom you are speaking. Speak in a normal tone of voice and indicate when the conversation is over. Let them know when you move from one place to another.
Conversation
HANDOUT:
1. Basic Etiquette: Speech Impairments
2. Words With Dignity
INSERT – People First guide
Virginia Law Enforcement DAT
A MAJOR part of the training is understanding and responding to the victim. We have heard in various sections about victimization, but the need to understand the disability and address the crime committed to the IWD, cannot be stressed enough.
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This is an estimate of people with developmental disabilities.The victimization rate of the disabled population as a wholeis about seven times greater than the typical population.72% of women who have developmental disabilities aresexually abused (Modell & Mak, 2006).
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Because some IWDs cannot recognize they are beingvictimized, perpetrators will often go back to him/her. Manyof these cases involve financial exploitation and repeatedsexual offense.
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You are often the first to address the matter, your skills inproper interaction are pivotal.
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It is a myth that people who may not fully grasp victimizationdo not suffer from it. This is a false impression. Someresearch has found they may suffer more, but there are feweradequate counseling and support services to address theirneeds.
Person must have the ability to consent to sexual interactions.You can find this information from a service provider who hastested for consent.
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Incident discussed whereby a woman with mild ID wassexually exploited over the course of 6 months by her busdriver.
Residential staff began to wonder why a 10-15 minute ridehome was taking 45-60 minutes.
Upon investigation, the bus driver was found to be taking thewoman to a local state park where they were engaging insexual conduct. He also began to invite his friends.
While the woman never reported it, it was a clear case ofsexual abuse relative to an individual with an intellectualdisability.
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PLAY VIDEO
Ask trainees to identify the disabilities of the victims –Down Syndrome/ID, autism, and cerebral palsy.
Individual with CP: note his lack of muscle control (AthetoidCP) but was able to communicate. He did not exhibit, nordoes he have, any intellectual challenges. He was able toexplain all that occurred in detail.
Young man with autism: while scattered, he was able toprovide good detail. Note how he said “the picture” –grasping this was a role play and not really going to happen(refer back to the point about literal thinking).
To review how to go about interviewing a victim or witness:Identify yourself – you may need to provide moredetails than just name and department.Make assessment of abilities – use this training andyour follow-up training to do just that.Modify the interaction (if necessary) so as to captureinformation the individual can provide you.
NY LE Disability Awareness Training
Direct the conversation – you want to keep it focusedand precise to the topic at hand. You may need to repeatwhat this is about and redirect to stay on topic.Acquire information – you may need to slow down.Remember, this will take longer than usual.Conclude the interview, let them know it is over and thatyou appreciate their assistance.Also discussed was the ability to handle distractions andattempt to record, if allowed.
Think of the tips you learned over the course of this training.Ask questions chronologically, see if the victim has a conceptof current events and places (where are you now, who is thePresident, where do you live). See if all responses will be “Yes”– as learned earlier, this is more common than “No.” Recall thecolor question (is this red, when it’s blue – measure response from that).
Match pacing and speed – they may be slower to respond.Questions may need to be broken down even more OR theymay need to be asked more slowly.
Use age-appropriate and/or developmental level language –no words that may not be understood. Simplify yourquestions.
Use plain English, basic terms and phrases. No slang.
Notice how the officer talking to Danny first addressed himthen asked the father. This shows respect and allowed him toassess Danny. Some caregivers may jump in; let them knowyou are talking to the individual first and only s/he should betalking. After this, address the caregiver, if necessary.
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After biological needs, communication is second mostimportant need.
What is a person’s quality of life without communication?
Pose the question what it would be like to be unable to talk.
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This covers every instance where an individual would have tocommunicate with someone.
Think of the impact this has on someone who has speechchallenges and would not be able to communicate with ease.
Note that one of these areas is in an emergency – think of theincidents in which you have been involved wherebysomeone could not verbally communicate.
This calls for you to adapt and adjust your communicationtechniques to ensure you are properly, accurately, andrespectfully addressing the individual’s needs.
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Some individuals in the CP video had dysarthriaDid you recognize the speech disabilities?
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Several states now have laws on the books that municipalitiesmust use Person First language, including New York, NewHampshire, Oregon, Pennsylvania, D.C., Vermont, Utah,Alaska, and Washington.
The premise is that we need to see the person first and itstarts with how we communicate.
REFER TO PERSON FIRST LANGUAGE GUIDE AND WORDS WITH DIGNITY HANDOUT
Virginia Law Enforcement DAT
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When we say the disability first, we tend to focus on that, notthe person, and we do not see him/her in the context ofequality.
He is not an autistic boy, he is a boy with autism. Avoididentifying anyone with ‘ic’ – epileptic, spastic, schizophrenic.
Use of inappropriate language is a sign of disrespect. Manyindividuals with disabilities will gauge your knowledge ofdisability awareness by how you respond to them.
Conversely, proper use of person first language promotesrespect and is an indicator of your understanding of how toproperly respond.
Relevance will be more common for first responders as itwould certainly be appropriate to reference the disabilitywhen calling in or reporting the situation.
Virginia Law Enforcement DAT
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If the person to whom you offered your help is fine, move on,knowing you reached out and offered.
Equipment such as wheelchairs are an extension of theindividual, not armrests or coat racks.
It is okay to reflect back on what you learned in this training,pause and gather your approach techniques, and then speak.
As pointed out several times, speak to the person with thedisability, not at them or to someone with them.
Virginia Law Enforcement DAT
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When you are having difficulty understanding someone, youmust let them finish what they are saying before youintercede.
There may be pauses and, with many individuals, it will simplytake longer than usual for them to complete a sentence. Youmust be patient during these interactions.
Repeat back to the person what you understood, then allowthem to elaborate. This shortens his/her need to respond andallows you to focus on the 1-2 words you do not understand.
Virginia Law Enforcement DAT
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Although it may seem basic, treating adults as adults for thosewho have speech challenges is often overlooked.
Be aware of the tone of your voice – people often speakcondescendingly without realizing it.
Virginia Law Enforcement DAT
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Encourage your audience to go to Niagara University’s websitefor updates, information, review of the material they learnedabout today, and to register for the e-newsletter.
The First Responders office is there for you, please use themfor any question you may have, input you can provide, orassistance you may need, professionally or personally.
Mention the FR-DAT Facebook page. This is continuallyupdated with useful stories and information regardingdisability awareness.
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