The Developmental Disabilities Assistance and Bill of Rights Act (DD Act)
Allan Bergman on the DD Act
Q9: The 1984 reauthorization of the DD Act included an amendment for specific program goals. What are they and how have those goals evolved over the years?
The 1984 Amendments were highly significant because, for the first time, and I would say this is landmark, not only in this legislation but in any federal disability legislation, we declared valued outcomes. The goals of services for individuals with developmental disabilities, and remember we're talking people with three or more substantial functional limitations in life skills – so we're talking about people with significant multiple disability/support needs.
The goals, these are the goals, are increased independence, increased productivity, and increased integration. And, in the statute, not willing to leave this to the regulators, pardon me, to the bureaucrats, the words were defined.
So, independence, which gets us into so much trouble because people want to take that literally and it wasn't meant that way. Independence means the ability to exert preference, choice, control, and direction. And people with the most significant disabilities can very much let us know their likes, their dislikes, their preferences, etc., and sometimes that may have to be through a surrogate, it may be through observation.
It may not be verbal. What kind of music do they like or not like? What kind of food? Are there staff they like better than other? Are there people who are in their peer group that they seem to get along with better? There's a ton of data, but it takes some work to get to it. But independence is not footloose and fancy free, it's independence in the sense of the independent living movement as well, choice, control, it's my life, get out of my face. So that was the first valued goal.
The second, productivity. Senator Weicker at the time, who was pivotal in this, who also happened to be the father of a son with Down Syndrome, we've had people on both sides of the aisle in our camp – didn't want to get into the work/no work. And, again, this is a long time ago in the evolution of the field.
So, productivity was defined to mean "engagement in productive meaningful work for pay or volunteer work in the community." And it really translates into having a valued presence, having social value, social worth. As Wolf Wolfensberger used to teach us about social role valorization, this person has something to give back. And that's a wonderful thing to put into law, and it was clear, not everybody's going to work 40 hours a week. We got that. And these are goals. And I'll come to the third one, and then we'll come back for a second.
The third goal was integration. Now remember, we had had a civil rights era. The previous decade it was still going forward along the racial lines, and now it was sort of our turn. And integration was just what it said – being able to use, participate in all the places in the community that people without disabilities or developmental disabilities, tend to use, whether that's park and rec services, transportation services, go to the movies, go to the golf course, go wherever and be part of it and be able to access it.
These are goals. And I don't climb mountains, but a few mountain climber friends of mine have advised me, "Allan, your goal as a mountain climber," their goal as mountain climbers, is always to reach the highest peak. And I said, "Tell me about that. Because if you don't go for the highest peak, you may never get to the plateau that's one before it."
I believe that's the intent here. The goals were services should increase independence, productivity, and integration. Didn't say everybody's going to achieve Nirvana. I don't know what that means anyhow. But those were the benchmarks to begin to be looked at that were declared 26 years ago in this field for people with the most significant disabilities.
So they were ahead of the ADA, which didn't come until 1990 with its goals of equality of opportunity, independent living, economic self-sufficiency, and full participation, which, frankly, very nicely parallel the goals from the Developmental Disabilities Assistance and Bill of Rights Act.