Monday, November 6, 2017

What is in a definition?

Great resource for federal advocacy also raises some questions about what "substantial" means when it comes to developmental disabilities

From The Arc's national staff:
Chapters of The Arc have a long and proud history of mobilizing advocates to share their views on public policy and pending legislation. To assist you in your grassroots advocacy, The Arc’s Position Statements and Public Policy Agenda are readily available on our website. Thanks to all of you who have shared your strategies, accomplishment and photos – they truly make our day.

From us (The Arc of King County): 

These are great resources and will help you engage with Senators Patty Murray and Maria Cantwell and your Congressional representative.

But it is interesting that the definition of developmental disability listed in these brochures is a lot different from the one used by Washington state, and from others that may be used by policymakers. It is especially important to advocacy because policy makers may think they are helping certain people when in fact those individuals are not covered by state's Medicaid-funded home and community based services.

At issue is definition of the term "substantial."

It is possible that someone who would qualify for services in a neighboring state would not in Washington.

Some different "DD" definitions

Centers for Disease Control and Prevention:
"Developmental disabilities are a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime."

The Arc:
"Developmental disabilities are physical or mental impairments that begin before age 22, are likely to continue indefinitely, and result in substantial functional limitations in at least three of the following:
  • Self-care (dressing, bathing, eating, and other daily tasks)
  • Speaking and being understood clearly
  • Learning
  • Walking/mobility
  • Self-direction
  • Independent living
  • Economic self-sufficiency 
- Crafted in partnership with  the American  Association  on  Intellectual  and  Developmental  Disabilities (AAIDD), the American Network of Community Options and Resources (ANCOR), the  National  Association of Councils on Developmental Disabilities (NACDD), and United  Cerebral  Palsy (UCP)

Washington State:
 "Developmental disability" means a disability attributable to intellectual disability, cerebral palsy, epilepsy, autism, or another neurological or other condition of an individual found by the secretary to be closely related to an intellectual disability or to require treatment similar to that required for individuals with intellectual disabilities, which disability originates before the individual attains age 18, which has continued or can be expected to continue indefinitely, and which constitutes a substantial limitation to the individual." (Emphasis is ours.)

The state goes on to define "substantial limitation" differently for different conditions.
  • For youth with intellectual disabilities, they need to test 2 deviations below mean in both intelligence tests and adaptive skills tests.
  • For autism, "substantial" means 2 deviations below the mean in adaptive skills, and 1 deviation below the mean in intelligence.
  • For cerebral palsy, neither intelligence nor adaptive skills are factors. The state looks at toileting, bathing, eating, dressing, mobility; or communication.
  • For epilepsy, the state requires the 2 deviations in adaptive behavior, but no deviation in intelligence.
Intellectual functioning, by the way, refers to reasoning, learning and problem solving, while adaptive behavior refers to social and practical skills. Neither particularly captures challenges with communication some people with developmental disabilities struggle with.  

The Developmental Disabilities Assistance and Bill of Rights Act (federal law):
"Developmental disability is a severe, chronic disability which:
  • Originated at birth or during childhood, is expected to continue indefinitely, and substantially restricts the individual's functioning in several major life activities.

More specifically, a developmental disability is a severe, chronic disability which:
  • Is attributable to a mental or physical impairment or a combination of mental and physical impairments;
  • Is manifested before the person attains age 22;
  • Results in substantial functional limitations in three or more of the following areas of major life activity:
        receptive and expressive language
        capacity for independent living, and
        economic self-sufficiency;
  • Reflects the person's need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services which are of lifelong or extended duration and are individually planned and coordinated;
  • Except that such term when applied to infants and young children means individuals from birth to age five, inclusive, who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided.

The upshot:

Federal law does not require significant impairments in both adaptive and cognitive skills. But Washington, for purposes of deciding how to distribute services through the state DDA, has chosen to require both, for certain conditions.

For purposes of our advocacy at The Arc, we do not limit our definition of who has a developmental disability to who qualifies for state DDA services. We protect and promote the rights of all people with intellectual and/or developmental disabilities and work to ensure they have equitable opportunities to live, learn, work and play in the community.