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Working with People with Developmental Disabilities

Presented by Allison Stark, M.A.

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What is a Developmental Disability?

1. A severe, chronic disability that is caused by a mental and/or physical impairment

2. Is identified before age 22 years (during the years of “development”)

3. Is likely to continue indefinitely

4. Results in substantial functional limitations in three or more of the following areas:

• Self-care

• Language

• Learning

• Mobility

• Self-direction

• Independent Living Skills

• Economic self-sufficiency

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Examples

• Genetic and Chromosomal Disorders

• Autism Spectrum Disorders

• Fetal Alcohol Syndrome

• Brain Injuries

• Intellectual Disability (also referred to as Mental Retardation)

• Cerebral Palsy

• Down Syndrome

• Neural Tube Defects

Psychiatric Disorders are NOT considered a developmental disability, however, some individuals with developmental disabilities also have a

psychiatric diagnosis.

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Intellectual Disability

1) Is characterized by damage to the brain or the brain’s ability to develop normally due to a disorder, trauma, infection or other stressors that occurs prior, during or immediately after birth. Some intellectual disabilities have no known cause.

2) Limitations in intellectual functioning

• Average IQ score is 100. People scoring below 70 are thought to have an intellectual disability.

3) Related limitations in 2 or more adaptive skills areas

• Professionals look at what a child can do in comparison to other children of his or her age.

4) There are different levels of Intellectual Disability (Mild, Moderate, Severe and Profound).

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Intellectual Disability

Individuals with Intellectual Disabilities may sometimes (but not always):

• Sit up, crawl, or walk later than other children or have gait issues as adults

• Learn to talk later or have trouble speaking

• Find it hard to remember things or have trouble problem solving

• Have trouble understanding social rules and norms

• Have trouble with their fine or gross motor skills

• Appear to act in ways that is out of sync with their chronological age

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Autism Spectrum Disorders

1) Autism Spectrum Disorders (ASD) and Autism are general terms used to describe a group of complex disorders of brain development.

2) These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. 

3)  Most cases of autism appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.

4) Most cases are diagnosed during early childhood.

PREVALENCE: 1 in 88 children* (1 in 54 boys) are diagnosed in the United States.

*source: Autism Speaks

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Autism Spectrum Disorders

Autism Spectrum Disorders do not present uniformly. People on the Autism Spectrum may:

• Have average or above average IQ (about 40%) or have varying levels of intellectual disability

• Be non-verbal (25% of individuals), speak a few words or have rich vocabularies

• Exhibit echolalia – repeating phrases, words or sounds

• Avoid eye contact and personal contact

• Participate in self-stimulating behaviors (spinning, rocking, flapping hands)

• Laugh or make noises during inappropriate moments

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The Problem with Labels

Labels are useful because they give people access to services and give a general outline for support, however, labels also limit potential and set up an environment which does not respect a person’s individual identity and rights.

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In the Community!

1990 - The Americans with Disabilities Act was passed

1999 - The Olmstead V.. L.C. ruling required states to eliminate “unnecessary segregation of persons with disabilities and to ensure that persons with disabilities receive services in the most integrated setting appropriate to their needs.”

As a result:

• More families choose to raise their children in the family homes

• Community based residential group homes have replaced nursing home settings

• More people with disabilities are competitively employed in the community

• People with developmental disabilities are encouraged to use their home communities and interact with non-disabled individuals

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Words are important!

The words you use to refer to someone or something say a great deal about your values about that person or thing and people with disabilities and their advocates will notice.

PEOPLE FIRST LANGUAGE is very simple, as the phrase implies, you always refer to the person first, not their disability.

Instead of … Say …

An Autistic A person on the Autism Spectrum

Intellectually disableda person with an intellectual disability

Wheelchair bound A person who uses a wheelchair

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What you can do!

A common and incorrect perception of people with developmental disabilities, particularly intellectual disability, has been that of the “eternal child.”

You should always ADDRESS THE PERSON first, not their caretaker or loved one when meeting them.

ACT NATURALLY or as you would with any other person without a disability.

SPEAK CLEARLY and ASK OR WAIT FOR QUESTIONS. It is entirely appropriate to ask the individual if you answered their question or if they understand what you are asking them.

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Residential Services

• CILAs (Community Integrated Living Arrangements)

• Funded by DHS-Division of Developmental Disabilities (DDD), fee-for-service, money follows the individual

• 24 Hour, Intermittent & Host Family in the community

• Must be determined eligible by Pre-Admission Screening (PAS) Agency (see resource slides for local PAS agency)

• Intermediate Care Facilities for Developmental Disabilities

• 24 Hour care in a facility (often 16 bed – 350 bed facilities)

• Licensed by IL Department of Public Health

• Must contact individual agencies/agency determine opening based on vacancies (ILDPH has lists)

• State Operated Developmental Centers (SODCs)

• Seven in the states (two nearby: Kiley/Waukegan, Ludeman/Park Forest)

• They are downsizing, admissions are rare and limited to severe behavioral challenges

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In-Home Services

• Home Based Support Services Program

• Funded by DHS-DDD, fee-for-service, money follows the individual

• Must be assessed by a Pre-Admission Screening Agency for eligibility

• Respite Services

• Grant Funds provided by DHS-DDD for specific agencies

• Must contact individual agencies for waitlist info or PAS for a list

• Northern cook agencies: Glenkirk, Orchard Village, JCFS

• Home Services Program

• Funded by DHS – Division of Rehab Services

• Primarily provides funds for those with physical disabilities

• Contact local DRS office directly

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Day Services

• Day Programs/Sheltered Workshops

• Funded by DHS-DDD, fee-for-service, money follows the individual

• Must be assessed by a Pre-Admission Screening Agency for eligibility

• Vocational Placement & Support

• Funded by DHS-DRS

• Must contact DRS Local office (see upcoming slides)

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PAS Agencies

• There are 18 PAS agencies in the state divided by geographical area

• PAS agencies provide case management and determine eligibility for state funded services. The individual must:

• Be Medicaid eligible

• Have a developmental disability that requires active treatment

• PAS continues to oversee services once an individual receives funding

• During Intake they complete a screening and register the individual in the Prioritization of Urgency of Need for Services (PUNS) database. Individual are selected randomly unless they are in “crisis.”

• Crisis = “imminent risk” of abuse, neglect or homelessness

• Funding may be received within 1-2 weeks (depending on if the person has Medicaid already).

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Local Resources

Illinois Department of Human Services Division of Developmental Disabilities (DHS-DDD)

http://www.dhs.state.il.us/page.aspx?item=32253

Lists services funded by DHS – DDD. Use to for the “office locator” function to find local offices.

Community Alternatives Unlimited (Local PAS)

http://www.cau.org/

(773) 867-4000

Our local Pre-Admission Screening Agency (serves northern Cook and Lake counties) that provides case management services to people with disabilities and their families and determines eligibility for residential and in-home services.

North Broadway DRS Office (Local DRS office)

5050 North Broadway, 4th FloorChicago, IL 60640

Phone: (773) 989-5000 Fax: (773) 989-3451