It’s Not Always the Way it SeemsAn Introduction to Individuals with Developmental
Disabilities
Kathy Biddlestone, RN, BSN, [email protected] County Board of Developmental DisabilitiesAugust 13, 2012
"Things are not always what they seem; the first appearance deceives many; the intelligence of a few perceives what has been carefully hidden.“ Phaedrus
•
ObjectivesDifferentiate between the terms Intellectual Disability and
Developmental Disability (I/DD)
Identify 5 specialized care needs of individuals with I/DD
Identify 5 challenges that meeting the disaster planning needs
of individuals with I/DD.
Escape/Rescue involves:
• Walking• Running• Driving• Seeing• Hearing• Quickly responding to directions
What is a Disability?
• Expression of limitations in an individual’s function within a social context which represents a substantial disadvantage to the individual– Physical: CP; Para/Quadriplegia; CVA; Amputees– Cognitive: TBI; CVA; I/DD– Mental: Mental illness– Sensory: Visual/Hearing– Emotional; PTSD; separation/abandonment issues– Developmental: Down syndrome; Autism; CP– Or some combination of these.
Current Terminology
• Intellectual/Developmental Disability
Often abbreviated
IDD or DD
Disability is not, “One Size Fits All”
Individuals who happen to have a disability arepart of our world’s
“Just Like Us”
facs.pppst.com
facs.pppst.com
What’s In a Name?The Evolution of the Terminology over 200 years
– Idiocy– Feeblemindedness– Mental deficiency– Mental disability– Mental handicap– Mental Retardation– Developmental Disabilities– Intellectual Disabilities
Rosa’s Law
• Oct. 5, 2010 President Obama signed into law, a bill which removed the term mental retardation and replaced it with intellectual disability
• Ohio adopted the change July 7, 2009
Only the name has changed…
• The term ID covers the same population of individuals previously diagnosed with Mental Retardation
• Every individual who is or was eligible for a diagnosis of mental retardation is eligible for a diagnosis of intellectual/developmental disability
Why is this Important?
• Essential role of the term Mental Retardation as it relates to public policy
IDEA (2004) Individuals with Disabilities ActSocial Security DisabilityInsuranceMedicaid Home and Community Based WaiversCitizenship and Legal StatusEarly intervention and EducationCivil and Criminal JusticeTraining and EmploymentIncome SupportHealth CareHousing and ZoningFEMA
So, just who are we talking about?
• 19.3 % of the 257.2 million people representing the general population of the US
• 49,639,600• Depending on who you ask!
Intellectual Disability
•Intellectual disability is characterized by significant limitations both in intellectual functioning and in adaptive behavior which covers many everyday social and practical skills.
Intellectual Disability
• Originates before age 18.• Adaptive behavior is expressed in conceptual,
social and practical adaptive skills.• Limitations are considered within the typical
environments of the person’s age peers and culture.
• Assessments consider cultural and linguistic diversity as well as differences in communication, sensory, motor and behavioral factors.
• Within an individual, limitations often coexist with strengths
IDD
Class IQ
Profound mental retardation Below 20
Severe mental retardation 20–34
Moderate mental retardation 35–49
Mild mental retardation 50–69
Borderline intellectual functioning 70–84
Developmental Disability
A severe, chronic disability
Manifested before the age of 22
Likely to continue indefinitely;
WHICH results in substantial functional limitations in three or more of the following areas of major life activity:
Self-care
Receptive and expressive language
Learning
Mobility
Self-direction
Capacity of independent living
Economic self-sufficiency
Examples of Developmental Disabilities
EpilepsyAutism and autism spectrum disorders
Fetal Alcoholism SyndromeLead Poisoning
Intellectual disabilityCerebral palsy
Down syndromePrader-Willi Syndrome
Hearing /Vision Impairments Cystic Fibrosis
• All people with an intellectual disability have a developmental disability however, not all people with a developmental disability have an intellectual disability.
Specialized Care Needs
Need for medical treatments/medications that they may not be able to perform independently.
which may lead to the need for a caregiver with specialized and often individual specific training
Swallowing/Feeding Concerns
• Particularly in individuals with Cerebral Palsy and Down’s syndrome with dementia
Adaptive Eating Equipment
• Nosy Cup • Bendable Fork
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Adaptive Eating Equipment
• Velcro utensil • Scoop Plate
•expressmedsupplies.com maddak.com
Tube Feedings
• Providing nutrition, hydration and medication through a tube inserted into the stomach or small intestine
www.oralcancer.org
Specialized Medical Needs
Medications
Glucometer use/Insulin Administration
• Diabetes management often requires blood sugar testing, using a glucometer.
• It may also require management with oral medication and/or injected insulin.
•
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Respiratory Issues Use of devices to provide inhaled
medications
• Nebulizer • Inhalers
www.natural-holistic-health.com
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Tracheostomy
• tracheostomy is a surgical procedure to create an opening through the neck into the trachea (windpipe). A tube is usually placed through this opening to provide an airway and to remove secretions from the lungs
www.bmedesign.engr.wisc.edu
• OXYGEN • CPAP
http://www.zorotools.comalignmap.com
Seizures
• Triggers• Protection from harm• Medications
– Diastat– Intranasal Versed– Sublingual medications
Equipment Needs
SpecializedCustomizedNot often readily available
Speech/LanguageModalitiesAugmentative Speech
Schedule
students.depaul.edu
Picture Board
•http://www.autism-community.com/communication/strategies-and-solutions/
Speech/LanguageModalitiesAugmentative Speech
• Springboard
•lausd.k12.ca.uslog.friendshipcircle.org
IPAD
Physical Mobility
• Reverse Walker• Gait Trainer
Lifting/Transferring
• Gait Belt • Hydraulic Lift
Power Mobility
• Reclining Power Chair • Scooter
•hmebc.com •bestmedicalsuppliesonsale.com
Wheelchair Seating/Positioning
Sensory Issues
• Particularly in individuals with Autism or Autism Spectrum Disorders
• difficulty filtering sensory input.
• nervous systems do not know what to block out and what to amplify.
• Lights• Noises• Faces• Touch• Smells• Textures
Other Equipment Resources
• Home Health Care Agencies• Home Health Departments of retail
stores/pharmacies• Hospices• Hospital supply companies• Mobility companies
Additional challenges
• Inappropriate referrals to medical facilities, resulting in increased burden to already under-resourced facilities.
• Misidentification of disability as an acute medical condition.
• Refusal to serve based on mislabeled conditions
Our mission is to support and empower people with developmental disabilities to live,
learn, work and play in the community.
CCBDD Services
Early Childhood Services & Supports School-Age Services & Supports Adult Services & Supports Family Support Program Community & Medicaid Services Support Administration Behavioral & Healthcare Services Assistive Technology Transportation Quality Assurance