Serving over 1,000 individuals with
disabilities and their families in Bergen and Passaic
Counties
Since 1947
Early Intervention
We hold these truths to be self-evident, that all men are created equal, that they are
endowed by their Creator with certain unalienable
Rights, that among these are Life, Liberty and the pursuit
of Happiness… Declaration of Independence
“Accept Me As I Am, Only Then Can We Discover Each Other” Federico Fellini
People First…
Disability Second
We Are People First Each of us is Different. We all have certain strengths and weaknesses. We all have the right to be the way we are and to become the way we want to be. Sometimes we think it is wrong to be different and try to be like another person or group of persons. Being different is good. It is easier to be ourselves, than to try and be someone else. We all have some disabilities. A disability is only part of our different-ness. It is not an important part of us. Sometimes people don’t understand this. They may put labels on us and treat us poorly, this is not because they are mean people, and it is because they didn’t understand. We can help teach them. We are all members of the human family. We all have things that we can do well and those we don’t. Sometimes we treat people based on the way they look or act. We should not make decisions about people without really getting to know them. We must accept others if we expect them to accept us.
Then the world will be a better place for all of us to live. from “ We are all People First”- by Nebraska Self Advocacy Services and John McGill .
Common Developmental
Disabilities
•Intellectual Disabilities•Autism Spectrum Disorder•Cerebral Palsy
Intellectual Disability
AAIDD definition: A disability characterized by significant limitations both in intellectual functioning and adaptive behavior as expressed in conceptual, social, and practical adaptive skills.
Intellectual Disability
Also referred to as: Cognitive Disability Includes many syndromes as well as unknown
causes Down Syndrome Mosaic Fragile X FAS
• May occur with Autism and Cerebral Palsy
Challenges Faced by Some Individuals with Intellectual Disabilities
•Communication•Attention Span•Problem Solving•Concrete vs. Abstract Thinking•Cause and Effect•Memory (multi step directions, carry over)•Generalization•Impulsivity•Gross and Fine Motor Skills•Hyper/Hypo Activity•Social Cues
Autism
“children and adults with autism exhibit atypical, repetitive behaviors and deficits in social and communication skills. Autism is usually diagnosed during the first three years of life and is four to five times more prevalent in boys than in girls. It knows no racial, ethnic or social boundaries.”
From Autism NJ
Autism
Autism Spectrum Disorders/Pervasive Developmental Disorders (PDD)
√ Autism√ Asperger’s Syndrome√ Childhood Disintegrative Disorder (CDD)√ Rett’s Syndrome√ PDD – Not Otherwise Specified (PDD-NOS)
Challenges faced by some Individuals with Autism
1. Some individuals with autism do not spontaneously reach out to others to share information or feelings and often do not know how to engage in simple social interactions.
1. There is often a delay in or a lack of development of spoken language. Many individuals with autism do develop speech. People with autism may have difficulty understanding non-verbal communication (e.g. body language, facial expressions, and frequent eye contact).
1. People with autism could have a restricted range of interest, periods of sustained activity (i.e. rocking, picking, flapping, etc…), resistance to changes in routine, unusual attachment to objects, difficulty with transitions, sensory integration challenges.
Cerebral Palsy “Cerebral palsy, also referred to as CP, is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; or during infancy.” - United Cerebral Palsy (UCP)
23-44% of people with CP will have some type of cognitive impairment.
Cerebral Palsy Affects body movement and muscle
coordination
Common types of Cerebral Palsy Spastic, Athetoid, Ataxic, and Combined
Common characteristics: Muscle tightness or spasticity Involuntary movement Disturbance in gait or mobility Difficulty swallowing Problems with speech
United Cerebral Palsy
Video NJ Self Advocacy Project- Respect
VideoRepresent
VideosInterview with a Child with Autism Spectrum Disorder
Introducing Children and
Their Families To The Library
VideoRepetitive Behaviors/
Transition
Supporting Behavior
Provide Structure Consistent
schedule/routine Social Story/Story Board
Eliminate distractions Keep materials in a box
Supporting Behavior
Support Transitions Provide concrete warning (2 more pages) Tell when get to end (this is the last page) Facilitate end “good bye book” Put book away in box or hold till end Introduce next activity Ending song or ritual (clean up song)
Supporting Behavior
Don’t sweat the small stuff
Find out what should be ignored
Use parent , teacher or therapist as a resource
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Communication
All people communicate.
People communicate for the same reasons – have their needs met, express feelings, build relationships, learn, etc…
Behavior is communication.
All communication is meaningful & should be “listened” to.
Methods of Communication
Spoken word Voice tone Facial expressions Gestures Pictures Situational cues Written word Assistive Communication Devices Sign language
Supporting Communication
Identify the method the person uses to communicate.
If person has a communication device encourage him/her to bring it with them and use it - enlist help from parents
Supporting Communication
Just because a person does not speak using words does not mean they cannot hear or understand.
Receptive and expressive language skills are not always at the same
Supporting Communication
Use words that the person understands.
Keep communication simple and to the point- don’t use excess explanations/ verbiage
Keep communication concrete vs. abstract
Supporting Communication
Speak clearly, maintain eye contact, and listen.
Be sure you have their attention before speaking
Speak directly to the person not caregiver
Supporting Communication
Speak normally- don’t use baby talk, or sing song voice
Modulate voice tone and volume
Pair verbal communication with gestures and facial expressions
Supporting Communication
May need to repeat instructions given to the group directly to the person.
May need to repeat instructions to the person more than once.
Supporting Communication
Echolalia Perseveration Scripting Talking about things other
people not interested in
Video
Young Man with Asperger’s Syndrome
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Physical & Sensory Supports
Mobility Supports Support people to freely move throughout their
environment.
Motor Skill Supports Support people to manipulate objects.
• Visual & Auditory Supports Support People to better hear and see
Sensory Supports Support people to manage sensory challenges
• Mobility Supports
Some people may need support with using a wheelchair, stroller, walker, cane, etc. Others may need to be assisted up and down stairs or may need you to stand close to them in order to provide support when walking.
Ensure there are clear pathways for walking and ample room for adaptive equipment to navigate the room.
Include a space for wheelchairs in the circle or at the table.
Some individuals may need to sit in an armchair to mitigate balance issues.
Wheelchairs, walkers, canes, etc… are extensions of a person’s body. Do not lean or hang your personal items on a wheelchair without asking permission.
Physical & Sensory Supports
•Motor Skill SupportsSome individuals may have fine motor skills challenges.
This may affect their ability to grasp and manipulate objects (i.e. paintbrush).
large handle paintbrush/masking tape Paper in shallow box Hand-over-hand support
Extra time to complete the task.
Physical & Sensory Supports
•Auditory Supports-
Individuals who have hearing challenges may need to be seated in front of the presenter so they can hear better, read lips and see facial expressions and gestures.
keep your face toward the individual do not turn your head away
do not walk about the room and talkrepeat audience questions or answers
Use gestures and other visual cues
Physical & Sensory Supports
•Visual Supports
Individuals with visual challenges will also benefit from sitting in front of the presenter so they are close up to what is happening.
Describe clearly what you are doing Use large print books
Provide opportunity to touch and feel objects.
Physical & Sensory Supports
•Sensory Integration - Some individuals may have heightened sensitivity to sensory stimuli.
Seekers- need constant sensory input Explore tactilely or orally Bump into things Spinning, flapping, vocalizations
Deep Touch Need Breaks
Sit on lap, Hand on arm,
Touch book, turn page
Physical & Sensory Supports
Avoiders - Difficulty tolerating sensory inputLight – too brightSound- too loud, too muchTouch – avoidantSmell- avoidant
Give spaceWear headphones
No perfumeLower lights
Use brush to apply glueCrayons vs. paint
Vocalizations
Physical & Sensory Supports
•Other define space where child is to sit
Sit “upons”Beanbag seats
Pillows
Physical & Sensory Supports
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Learning Styles
Auditory Visual Tactile
Most people learn best when information is presented using more than one style.
Think about how you can present the same information involving more than one sense at a time. This will increase the chances of the person learning.
Three major types of learning styles and ways to use them:
1. Auditory – Spoken word/voice tone, keep sentences short and to the point, and use consistent language.
1. Visual – Use props and tools, demonstration, signs, gestures, facial expressions, pictures, reading, etc…
1. Tactile – Involve the individual in touching or pointing to a picture or object, picking up an item, or practicing a task
Learning Styles
More Adaptations and Activities
VideoMore Alike than Different
Age Appropriateness is a concept whereby activities are deemed to be appropriate to an individual’s chronological age.
The term is also used in the negative to describe activities which are inappropriate to an individual’s chronological age even though they might be appropriate to the individual’s developmental stage i.e. not age appropriate.
Age Appropriate
It is recommended that activities and materials for teens and adults with developmental disabilities be appropriate to the individual’s age.
This may require some adaptation to accommodate the developmental stage however does not allow for the use of children’s activities and materials.
Age Appropriate
Activities should:•Support the development of leisure skills & hobbies•Support the development of new interests•Support the enhancement of existing interests•Support the development of social connections with people with similar interests•Provide enjoyment
Age Appropriate
Activity Ideas:
Music club- ( 50’s, 60’s etc.) read about music icons, listen to music, start a fan club, collect album cover art replicas, start a scrapbook
Train club- read about trains, collect trains, show and tell with trains, visit train stations and take pictures of trains, start a train scrapbook
Current events group- read the newspaper together, discuss
Age Appropriate
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Resource Ideas:Comic books, magazines, encyclopedias, newspapers, web sites, coffee table books, biographies- can be excerpted and read aloud), high interest low literacy books.
Age Appropriate Topics:
Fashion Baseball Bugs Antique cars Gardening Nascar
Super heroes Astronauts and space Broadway Movies Music Wrestling
Videos
Autism Every Day
Videos
Girl Scouts
Working With Parents
Recognize where they are coming from
Fear of RejectionEmbarrassmentTheir Concern for other children and familiesExhaustionSensitivity to criticism being judgedGuilt
Working With Parents
You set the tone for all parents and children Welcoming Willing and Accepting Sensitive Confident Humor Tolerant Flexible Willing to learn and try
Use them as a Resource
Working With Parents
Separation- May need to gradually wean from parent
Can take one or a number of sessions
Sit next, then behind, then back of room, then out
Transitional object
Provide feedback mechanism
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People First LanguageExamples of People First Language
Now we say: We used to say: People with disabilities. The handicapped or disabled.
Paul has an intellectual disability (diagnosis). He’s mentally retarded.
Kate has autism (or a diagnosis of...). She’s autistic.
Ryan has Down syndrome (or a diagnosis of...). He’s Down’s; a Down's person; mongoloid.
Sarah has a learning disability (diagnosis). She’s learning disabled.
Bob has a physical disability. He is crippled/quadriplegic.
Mary is of short stature/she’s a little person. She’s a dwarf/midget.
Tom has a mental health diagnosis. He’s emotionally disturbed/mentally ill.
Nora uses a wheelchair/mobility chair. She’s confined to/is wheelchair bound.
People without disabilities. Normal/healthy/typical people.
Communicates with her eyes/device/etc… Is non-verbal.
Accessible parking, hotel room, etc… Handicapped parking, hotel room, etc…
She needs . . . or she uses . . . She has problems/special needs.
Kathy Snow, 2006
Never doubt that a small group of thoughtful committed
citizens can change the world;
indeed it is the only thing that ever does.
Margaret Mead
We hold these truths to be self-evident, that all men are created equal, that they are
endowed by their Creator with certain unalienable
Rights, that among these are Life, Liberty and the pursuit
of Happiness… Declaration of Independence
VideoStars Spangled Banner by
3 year old singer
Overview of Developmental Disabilities
Some material in this presentation Excerpted and adapted from:
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Adaptive Behavior Skills
Conceptual Skills Social Skills Practical Skills
Receptive and expressive language
Reading and writing Money concepts
Self-direction
Relationships Responsibility
Self-esteemUnderstanding social rules
Obeying laws Avoiding victimization (e.g. being taken advantage of)
EatingDressingMobilityToileting
Taking medicationPreparing mealsUsing the phone
Using transportationManaging money
HousekeepingJob skills
Adaptive skills are daily living skills needed to live, work, and play in the community. The adaptive skills are: communication, self-care, home living, social skills, leisure, health and safety, self-direction, fundamental academics, community use, and work.
General Information: 1. Limitations in present functioning must be considered within the context of community environments typical of the individual’s age, peers, and culture. 2. Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors. 3. Limitations often coexist with strengths. (e.g. knows how to ride the bus, but needs to be reminded to take a shower; takes medication independently, but needs support to count change, etc.).
4. An important purpose of describing limitations is to develop a profile of needed supports. 5. With appropriate individualized supports over a sustained period, the life functioning of the person an intellectual disability generally will improve.
Autism
1. Autism is defined and diagnosed behaviorally.
1. The cause of autism is not known; however, there is much support that autism is a biologically based disorder.
1. No known factors in the psychological environment of a child have been shown to cause autism.
1. Although autism is a lifelong developmental disability it is treatable. Early diagnosis and appropriate intervention are extremely important.
1. Developmental and symptomatic patterns among individuals with autism can vary greatly.
1. Not all people with diagnoses of autism have an intellectual disability.
1. About 25% of all individuals with autism develop seizures
AutismDispelling Myths and Misconceptions
People with autism do make eye contact.
Many people with autism communicate.
Not all people with autism display exceptional skills.
People do not “outgrow” autism.
People with autism can show affection.
Supporting People with Autism
Be patient.
Take time to “listen,” even if the person doesn’t use words to communicate.
Use Assistive Technology when appropriate.
Recognize that the person’s senses may be over or under active. People with autism may:
Be very sensitive to sound. Recognize when TVs, radios, etc… need to be turned down or off
Be sensitive to touch or taste Engage in “self-stimulating” behavior
Types of CP
Spastic cerebral palsy: (affects 70% - 80% of people with CP) primary characteristic is stiffly and permanently contracted muscles.
Athetoid, or dyskinetic cerebral palsy: (affects about 10% to 20% of people with CP) characteristics include uncontrolled, slow, writhing movements typically affecting the hands, feet, arms, or legs and, in some cases, the muscles of the face and tongue, causing grimacing or drooling.
The movements often increase during periods of emotional stress and disappear during sleep. People with this form of CP may also have problems coordinating the muscle movements needed for speech, a condition known as dysarthria.
Types of CP
Ataxic cerebral palsy: A rare form of CP (affects an estimated 5% to 10% of people with CP) that affects the sense of balance and depth perception. Characteristics may include poor coordination; unsteady walking with a wide-based gait (feet unusually far apart). A person with this form of CP may experience difficulty when attempting quick or precise movements, such as writing or buttoning a shirt.
They may also have intention tremor. An intention tremor begins as a voluntary movement, such as reaching for a book, causing a trembling that affects the body part being used and that worsens as the individual gets nearer to the desired object.
Combined forms: It is not unusual for people with CP to have symptoms of more than one of the previous three forms. The most common mixed form includes spasticity and athetoid movements but other combinations are also possible.
Epilepsy
Neurological condition that involves seizures.
Seizures are caused by a sudden change in how the cells of the brain send electrical signals to each other.
A seizure is a change in sensation, awareness, or behavior brought about by a brief electrical disturbance in the brain.
The Epilepsy Foundation
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Common Types of Seizures Absence Seizure
(formerly “petit mal”) Brief lapse in awareness Staring, eye blinking, upward eye rolls
Complex-Partial Seizure (formerly “temporal lobe” or “psychomotor”)
Activity stops Dazed, staring expression Automatic, repetitious and purposeless behavior
Tonic-Clonic Seizure(formerly “grand mal”)
Convulsions (body stiffens) Person falls to the ground (body jerks, temporary loss of
consciousness)
Epilepsy
Seizures
Seizures vary from a momentary disruption of the senses, to short periods of unconsciousness or staring spells, to convulsions.
Some people have just one type of seizure. Others have more than one type.
Although they look different, all seizures are caused by the same thing: a sudden change in how the cells of the brain send electrical signals to each other
Epilepsy
Support for Seizures
Keep the person safe.
Reassure the person.
Note the time, length and outcome of seizures.
Support During A Seizure
• Keep the person safe (e.g. block hazards such as stairs, doors, traffic).
• Remove any nearby objects that might cause injury.• Do not restrain the person.• Stay with the person until the seizure ends.• Be reassuring and supportive.
Support during tonic-clonic seizures (Do all of the above and…):•Safely help the person to the floor. •Cushion the person’s head using a small pillow or folded clothing.•Loosen tight clothing.•Do not place anything in the person’s mouth or between the person’s teeth.•When the seizure ends, if needed, place the person on their side, with the face•toward the floor (to allow secretions to drain).•If the person does not resume breathing after the seizure, call 911 & start•CPR.•Let the person rest until fully awake.
Call 911 if: first seizure, multiple seizures, over 5 minutes, injured during a seizure, pregnant, diabetic, not part of normal seizure history, you are not sure
Dual Diagnosis People are labeled as having a dual diagnosis
when they have both a developmental disability and a mental health diagnosis.
Some Common mental health diagnoses: Anxiety Disorder Depression Bipolar Disorder Schizophrenia Dementia
Remember only a doctor or psychologist can make a mental health diagnosis. Do not make assumptions based on “symptoms.”
PicaAn eating disorder involving a compulsive craving toeat non-food items, lasting more than one month.
Know the warning signs of Pica: Repetitive consumption of non-food items The eating behavior is considered inappropriate for the
individual’s age or developmental stage (older than 18 to 24 months).
The eating behavior is not a part of a cultural, ethnic, or religious practice
Support: Pica can be life threatening. Close supervision andremoval of items that the person might eat may benecessary for safety.
Dementia
Alzheimer’s Type Cause of 50%-60% of all dementia
Risk of Alzheimer’s increases with a diagnosis of Down syndrome
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Other Disabilities
Fragile X Syndrome
Prader-Willi Syndrome
Rett’s Syndrome
Spina Bifida
Traumatic & Acquired Brain Injuries
Tourette Syndrome
Some of the people may have the following disabilities:
… and many others