Expert Update: Rethinking the Developmental Disability Definition

Screen Shot 2014-10-21 at 3.24.25 PMI want to begin this article with a confession: I broke my neck in 1973 at the age of 27. This is the same age that Janice Joplin, Jimi Hendrix and Jim Morrison committed suicide. Their suicides have nothing to do with the rest of the article except for the fact that I wanted to get
your attention and the number 27. Another confession: because of that number 27, I am a D (disability), not a DD (developmental disability). I actually didn't realize that when I was lying in bed in the Bronx Veterans Affairs Hospital. Nor did it come up when I became active in advocacy in Houston, TX with the Texas Paralyzed Veterans and the Coalition for Barrier Free Living. It actually never came up when I became active in the Coalition of Texans with Disabilities nor when I was on the board of the American Coalition of Citizens with Disabilities.

When I was hired as coordinator of Handicapped Student Services at the University of Houston, they never mentioned it during my job interview. When I got involved with ADAPT (originally Americans Disabled for Accessible Public Transit) in 1984, neither ADAPT's founder Wade Blank, its national organizer Mike Auberger, nor renowned community organizer Shel Trapp ever asked the "D" or "DD" question.

When I first got arrested for civil disobedience in Washington, DC blocking an inaccessible bus, the arresting police officer never asked the question. I first became aware of the distinction between D and DD was when I served on the board of the National Association of Protection and Advocacy Systems (NAPAS), which is now the National Disability Rights Network (NDRN). I learned about the definition of "developmental disability." It was first introduced in 1970 for certain disabilities acquired before age 18, and then further expanded in 1975 in the Developmentally Disabled Assistance and Bill of Rights Act (DD Act) which raised the age of onset to 22 and switched from a list of specific conditions to a more functional approach. I learned the acronyms of DD; P&A (protection and advocacy); PAIMI (protection and advocacy for individuals with mental illness); and PAIR (protection and advocacy for individual rights).

I found out that not only did the DD Act create the P&A groups, but also State Councils on Developmental Disabilities and University Centers for Excellence in Developmental Disabilities Education, Research and Service. It is quite an impressive structure. It struck me sitting at these NAPAS board meetings that although it was a well thought out structure, why did it focus only on people with the label of DD? It seemed to contradict the cross-disability philosophy that fueled the independent living movement and the disability rights movement as a whole. It also seemed to contradict a slogan self- advocates used: LABEL JARS, NOT PEOPLE!

I had participated in the protests to implement the rules of Section 504 of the Rehabilitation Act of 1973, which put into law the definition of "person with a disability" that includes people with the label of DD. Why the separation? This definition was the basis for the current definition in the Americans with Disabilities Act (ADA).

I then realized that this separation was bureaucratically designed in 1979 when the Department of Health, Education and Welfare split into two agencies: Department of Health and Human Services (HHS) and the Department of Education (DOE). The Administration on Developmental Disabilities was created at HHS and Independent Living (IL) went to the Rehabilitation Services Administration at DOE. These were decisions made by the advocates at the time. The ADA will be celebrating its 25th anniversary next year. Community integration, the philosophical foundation of the ADA, is something everyone in the disability community can agree on.

Though our rhetoric is of cross- disability, the reality is we are an extremely fragmented community, that has built our service delivery models for long-term services and supports (LTSS), based not on our functional needs, but on an arbitrary age of onset and governmental disability definitions. There is no debate on the fact that all people with disabilities don't need the same package of services.

Our community is not a fondue all melted together; we are more like a tossed salad made up distinct vegetables (no offense intended). However if you need an attendant to get out of bed, it doesn't matter if you were born with your disability, acquired it before age 22 or broke your neck at 50. If you need assistance with financial management or other decision- making tasks, does it really matter that you had a brain injury at 30, a stroke at 60 or were born with those needs?

If you have an "Intellectual Disability," why is it the government only recognizes it if you had it before age 22? How do mental health needs get integrated into the LTSS system?

We have built systems that have their own cultures. We speak different languages defining the same things. We have different program names, different packages of services, similar services with different names, different rates for workers doing the same tasks, different providers, different bureaucratic agencies, etc. It is not an easy discussion. There are many interest groups that have a stake in keeping the status quo. It is also a political minefield that we hate to traverse. I personally think we avoid this open discussion at our own peril.

Medicaid, the largest funder of LTSS, will be going through reforms over the next five to 10 years that none of us can predict. Medicaid managed care is growing. Whether we support or oppose it, we can't escape the reality that even some of the most progressive governors in the country are implementing Medicaid managed care. Congress seems unable to address difficult issues so it appears change, if it is to occur, must bubble up from the state level.

A start might be an Administration on People with Significant Disabilities within the Administration on Community Living. Another thought is to change the age of onset in the DD Act to under 60. As we celebrate the 25th Anniversary of the ADA let's not miss the opportunity to debate how our services and supports system can better align with the community integration philosophy of the ADA.

BOB KAFKA is a disability rights activist and co-founder of ADAPT of Texas. Through his work with ADAPT, Kafka helped shepherd the WE WILL RIDE victory for lifts on buses and the 1990 Americans with Disabilities
Act. ADAPT fights to release people from nursing homes and other institutions and works for more accessible communities including transportation, housing, public accommodations and governmental buildings and programs.

Tags: Making a Difference, Expert Update