Celebrating the 50th Anniversary of the Developmental Disabilities Act

What made the need for developmental disabilities legislation different from what already existed? Why did you need a law? What were you aiming for?

Well, we needed it for several different reasons, all of which converged on the same solution. We needed it because of the continuing problem of being subordinated to mental health, particularly at the state level, and having the mental-retardation agenda be a kind of stepchild of that system. That was one reason.

We needed… so we needed a separate identity. So our agenda was to further distance ourselves, differentiate ourselves based on the early-onset consideration and then to consider who else might share that with us, not because we wanted – we needed allies exactly, but because it was fairly apparent from our work in the public schools that we were dealing with children who were disabled, and the concept of special education included all such children, and we were working at the state and local level with public-school systems in which we were joining forces with parents whose children have other types of disabilities.

The United Cerebral Palsy Associations were moving fairly effectively to identify that category of people, and while at the state and local level there was considerable rivalry and even a little bit of animosity between those two groups, at the national level, we had very good working relationships.

The staff in United Cerebral Palsy national office was quite – Una Haynes and people of that sort were quite cognizant of the various considerable degree of overlap, and they, in fact, had been quite active in bringing improved physical-therapy services to many of the institutions for people who are retarded, because since there were no long-term-care institutions for cerebral palsy.

Many of the children who had cerebral palsy ended up in institutions for the mentally retarded. They got in on the basis of mild mental retardation and severe cerebral palsy. So we had a commonality there, and it was fairly clear to me, furthermore, that if we permitted the several groups who were forming around distinct entities of that sort to move into a more active lobbying role…

In competition with one another that we would defeat our own ends. I do want to say one other thing that came into the stream of thoughts, or so to speak, that led up to the formulation of the developmental-disabilities idea. The President's Committee on Mental Retardation, not to be confused with the President's Panel, was created in 1966 by executive order of President Johnson.

PCMR had issued, among its reports, a kind of a paternalistic admonition to us in the MR field that we ought to take more cognizance of the existence of people with other types of disabilities, we ought to be more catholic in our approaches.

And I took that as a warning of the change in times and a recognition that MR had become quite a… quite a… [stammers] an active agenda during the Kennedy Administration, and it probably wasn't going to enjoy quite as much singular attention
in the future and that the coalitions were in the order of the day, particularly if they were logical, as many of us felt this particular one was.

Ted Kennedy decided that for historical reasons and whatnot, he would like to be the principal sponsor of this particular piece of legislation. So Senator Yarborough acceded to that, and it became the Kennedy-Yarborough Bill, not the Yarborough-Kennedy Bill. However, the effect of that was that we then could no longer work with the committee staff because Senator Kennedy's status did not give him command of the committee staff, so we worked with Senator Kennedy's personal staff.

So there was a bit of a setback there in terms of our getting into the mainstream running down the pike. The other thing that's quite important that one has to recognize about this is that Eunice and Sargent Shriver had left the country and were in Paris where Sargent Shriver was Ambassador to France for President Nixon.

That was important because Eunice had taken a very active role in respect to the earlier legislation, and she was kind of considered the MR expert in the Kennedy family, and if she had been around, she would've had a good deal to say about this, and I know that when she came back from France and discovered what had happened, that she was one of the people who felt that the attenuation of the MR focus was a mistake.

One of the concepts that we had clearly in mind when we were drafting this legislation, and I might say parenthetically that when I say, "We were drafting it," I'm referring to about half a dozen people in Washington, including Harry Schnibbe, who was very supportive and who was the Executive Director of the National Association of State Mental Health – program directors.

And Eleanor Elkin from…

Well, Eleanor Elkin was… she was supporting the activity, and she did convene the first meeting of the consortium, but she was not paying detailed attention to what was going on.

Was anyone from the administration helping out at that point?

Well, no, absolutely not, because they were… you know, they were..

It would've been inappropriate.

Right. And that's really what I was leading up to. But we were working with the staff, and particularly with Carey Parker and, subsequently, with Congressman Rogers' staff after we'd gotten fairly well down the pike with what we wanted for the Senate.

We then worked with Congressman Rogers.

The initial very broad definition was curtailed in several respects, partly because Senator Kennedy began hearing some of the protests, partly because… rather behind the scenes, Arthur Lesser, the Director of the Maternal and Child Health and Crippled Children's program in Department of Health, objected that we were invading
his territory.

You really had a great deal of external pressure from different sources…

Yes. True, true. That was helping to forge the definition…

That's right.

At the same time, the insiders, if you will…

Yeah.

…Were trying to formulate something that would hold up over time and would really be the door through which these developmental-disabilities funds could effectively pass.

There were two other ideas, or factors, that contributed to this. One was that at that time, about the only service support money that was around… that supported services for people who were retarded was in vocational rehabilitation.

That clearly only assisted people who were considered candidates for employment, which was basically the mildly retarded. Similarly, in education, there were some funds… this is long before Education for All Handicapped Children Act – there were some funds going down the pike as a result of the legislation enacted in 1965 and 1966.

There was some money going down the pike for public-school programs… that could be directed to people with mental retardation.

But in those days, most of the people that were benefiting by that were the so-called educable retarded and some trainable. The upshot was that when you looked around, there was really very little service money that was reaching people who most needed it, who were the most severely disabled, children and adults, and who… were ignored in the scheme of things to a considerable extent.

So this legislation was intended to be a Zero Reject idea. But, clearly, the states had-- under our federal system, the states clearly had the responsibility for taking care of people who were too dependent to take care of themselves, and that we should strengthen the states.

Later on there…

What was the phrase that they began to use?

"Capacity building." Federal government got into capacity building at various times, meaning giving the states some degree – the ability to build up their own capacity to do what they were doing.

The very first meeting, I might say, of the National Advisory Council was held in conjunction with a meeting of the President's Committee, and we had a joint luncheon so that we could make clear that we were not stepping on each other's toes. I think the issue of the State Advisory Council is worth commenting on.

In the Hill-Burton Act… there had been call for advisory councils to the people making the state plan for construction of hospital and other medical facilities, and I had served on two of those councils during the '60s, simultaneously, interesting enough--

One in Pennsylvania and one in New Jersey.

We were legal residents of New Jersey and, in fact, also had an apartment in State College, Pennsylvania. And I was nabbed by both states to sit on their advisory council, and I saw, very interestingly, how differently two states can proceed under the same federal law.

But what was more important was that both states were similar in one respect, and I learned from consultation that this was common throughout the country, and that is the staff assigned developed the plan, and then the day before the plan was due in Washington, they would convene the Advisory Council and basically say,

"You better approve this, or we'll lose our federal money." So that the advisory councils were very nominal in their influence on the construction plans under Hill-Burton. And I was determined that that wasn't going to happen when we carried over that nominal provision into the Developmental Disabilities Act. So we put in just a few words, which said, in effect, that the councils had to submit the plans.