Graphic: The Disability Rights and Independent Living Movement

Brenda Premo

Audio transcript: On the Lanterman Developmental Disabilities Services Act and defining "most significantly disabled"
Date: October 30, 2001
Interviewer: Kathy Cowan

Note: Transcripts have been lightly edited; therefore there may be slight discrepancies with audio clips.


Premo:
Well, in California the Lanterman Act passed, and when you were developmentally disabled as defined by California, which is different than the federal act, you were entitled to services. Now, that wasn't how it was when the Lanterman Act was passed, but a court case made it so.

So now you had a whole lot of people who were significantly disabled, and their parents—here come the parents—wanted them to have job preparation. Then on the federal level, the independent living centers, organizations of and for the blind, of and for the deaf began to fight for people with more significant disabilities to have employment. State associations such as the National Independent Living Council [National Council on Independent Living], were really pushing this.

So the law changed. It changed over time. It didn't change in one change. It started back in the seventies, with 501 to 508. Again, it wasn't in three years this happened. You're talking about a twenty-five-year span of changes, perceptually, in the law.

I happened to be at that time deputy director. It was interesting—and I have to say I learned a lot. I learned a lot. The first discussion which occurred was, Okay, now, how do we do—they did two things in that act. First they said, "You're supposed to serve the most significantly disabled," and then they said, "And by the way, if you run out of money, you have to have an order of selection. If you're out of money, you have to serve the most significantly disabled first, and go down the line."

Okay. Now we say that we want to do careers with this bill, okay? We want to let people reach the job they want based on their careers, not an entry-level job. But we say if you're going to run out of money—which you are going to run out of money, because you're not going to get funded at that level—then you have to go to order of selection.

So what was the first discussion? It wasn't like the National Council about policy; it was how do you define most significantly disabled, because every disability group is different. So we designed the most—and I was deputy; I want to say for the record I wasn't director—we designed the most complex, difficult, time-consuming process to do this of any entity I have ever seen. It would have been a great doctoral study.

The unfortunate part about it was that when I became director, it was already in the approval process, so I had to undo it. It took me four years to undo what we did the first three years in terms of this very convoluted process of defining most significant disability. It cost a lot of money, so it took away from direct services. That was one of the most frustrating experiences of my life, was dealing with that.

What it did, it took away from the philosophical ideas of how you go about providing services to ensure outcomes of employment for people with the most significant disabilities, because it focused on the administrative processing of that person, rather than the outcome. Of course, our counselors rebelled. The supervisors rebelled. I said, when I became director, "We're going to undo this."

End of transcript


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