Tuesday, October 27, 2009

Defining the Definition Problem

Sometimes, definitions can be tricky. If we don’t fully understand the definition of something, we can become confused, just like Vizzini in “The Princess Bride.”

I bring this up because we have a definition problem in the U.S.: how we define a developmental disability.

It seems like a standard definition would be simple, but of course it is not.

Here is how the federal government defines a developmental disability:

Physical or mental impairments that begin before age 22, and alter or substantially inhibit a person's capacity to do at least three of the following:

– Take care of themselves (dress, bathe, eat, and other daily tasks)
– Speak and be understood clearly
– Learn
– Walk/ Move around
– Make decisions
– Live on their own

Here’s how Colorado defines a developmental disability:

A disability that is manifested before the person reaches twenty-two years of age, which constitutes a substantial disability to the affected individual, and is attributable to mental retardation or related conditions which include cerebral palsy, epilepsy, autism, or other neurological conditions when such conditions result in impairment of general intellectual functioning or adaptive behavior similar to that of a person with mental retardation.

It is not just Colorado and the Feds that have different definitions of what constitutes a developmental disability. Here is a quick breakdown of how states across the country define a developmental disability:

- 22 states use the Federal Definition
- 17 states use a definition similar to the Federal definition, except they either exclude or do not specify physical impairments or they do not specify that mental retardation (MR) is needed for eligibility
- Colorado & Minnesota’s definition states that the individual must have intellectual function or adaptive behavior similar to MR
- 3 states say the individual must have MR or Autism
- 6 states say the individual must have MR

So I am to take this disparity in definitions to mean that if I have a developmental disability and live in a state that uses the federal definition, and then move to a state that uses a more restrictive definition that doesn’t include me, I am suddenly “cured”? Of course not.

The different definitions don’t make any sense unless you consider that more restrictive definitions, such as Colorado’s, limit the number of people eligible for services and therefore lower the costs to the states for providing services.

Look, I fully understand the issue we are facing in regards to limited resources in the face of ever increasing demand for services. But creating artificial barriers for eligibility for services doesn’t actually change level of need for services. And having states create DD definitions (based on fiscal reasons) for what should really be a diagnostic definition is like fooling the media by making up a story about a six year old boy stuck aboard a homemade helium balloon flying across the country in order to be “. . . more marketable for future media interest.” It is just not rational.

You may have read my recent post about using demand management. In it, I point out that we don’t have good data regarding adult services in the state, or in the country. The lack of a unified definition of a developmental disability greatly contributes to that lack of quality data.

And you may have read my recent blog post about the lack of a synchronized, coordinated effort to address problems facing the DD system in our state and beyond. Yet again, the Heinz 57 approach to defining a developmental disability across the country only makes that challenge more difficult to overcome.

My suggestion? Create a single, nation-wide definition of what constitutes a developmental disability. If we really want to face, head on, the tough tasks ahead for providers of services to individuals with developmental disabilities, we need to start conversing using the same language. That’s not so inconceivable, is it?

Then again, what do I know?

1 comment:

  1. I think this blog has a much called for progressive approach and I'm pleased to view it's content! This particular topic hits the marrow in the bone, which is ironically progressive, for what I see as the greatest need is a fresh view, "beginner's mind" if you will, where defining developmental disabilities is concerned. I might even be so inclined as to ask what the necessity of labeling a person as such serves the consumer at all, and admit that to be a radical posture. More to the point; I fear that we continue to oppress people according to their commonly "operational" (as assumed by the privileged majority) intelligence. Terms such as "high" or "low" "functioning" are coined as a match to a relatively rigid/fixed and, again, oppressive (fear based) response to representations of intelligence that the majority may be too impatient to interact with. What if we (gasp) threw out the definitions with the aspiration to care, not treat, the individual? Again, a radical proposal, but someone's got to do it. :)
    Thanks for the rant space, Mark!