The Developmental Disabilities Assistance and Bill of Rights Act (DD Act)

The role of the Developmental Disabilities Councils have, in fact, changed very significantly, going back to the original state plan in mental retardation, but even at the first comprehensive planning in the DD Act of 1970. And it would take us an hour to go through all the changes, but conceptually, we can't seem to decide what we want them to be until about 12-15 years ago.

They went from planning to comprehensive planning to priority planning to areas of emphasis to a 16 list target area to down to four to then back to 12, and now it's nine. So I think different actors get to Congress and say, "This is an important area, and we want our Council to be able to do it."

And so Councils had a lot of choice on what they wanted to do. On the one hand, that speaks to the uniqueness of each of the states. On the other hand, it makes it very difficult to develop a composite national picture if Minnesota is doing employment, housing, transportation, and one other, let's say, and the neighboring states in the Dakotas are doing recreation, early intervention, system coordination, and something else.

Because then we don't even have good comparative databases. So I think we've not been able to figure out, how do we want more cohesion out of this without recognizing that states are different places? I don't know what the right number is. Is it six, is it five, is it four? But it's certainly not 12 or 16. And so currently it's nine areas of emphasis or priority.

But within that there have been shifts, and new definitions have been added, and Council was given very different directions starting with in the 1987 you gotta do the study, you gotta look at independence, productivity, and integration. You've gotta look at the unserved and the underserved.

Even the definitions changed. At one point it was alternative community living, alternative to the institution. Finally into the late ‘80s and early ‘90s, alternative dropped out. Now it's community living.

In the mid ‘80s we added non-vocational, social development. God knows we created a bunch of those places for people who would never go to work, and, guess what? They haven't gone to work. That category was taken out three years later, but it left a terrible, terrible vestige of itself probably in most of the states because it was like okay, we'll give these people something to do during the day.

The other thing that changes here is how much autonomy does the Council have? Is it really to the governor? What's its role with the legislature? What's its role with the consumers? How is its composition made up? And so the Council has gone from not a prescriptive recommendation to being 50% consumers and today 60%.

And of that there's the formula of one thirds: One third must be parents of people with developmental disabilities, one third must be people with developmental disabilities, and the other third can be a mix of both of the other two groups, but 60% have to be what I would call primary or secondary customers or consumers.

In addition, one of those 60%, one seat, used to be someone living in an institution or generally the family member or guardian. In the most recent iteration in 2000, that was changed to somebody either in or used to be a former resident of, which begins to again refine and reshape where we're trying to go with this legislation.

So we've had these little nuances over the years to refine, redirect, re-strategize, particularly the role of the Councils, to a lesser extent the Protection and Advocacy System and the University Center for Excellence in Developmental Disabilities. But most recently for the Planning Councils, one, the word planning was taken away, and that's important because otherwise they got bogged down in plans.

Well, plans without actions don't necessarily get us anywhere, and I think there was a recognition we need some strategic plans. We need some objectives. We need some accountability.

And that's the other thing that has happened for the Act, but more so for the Councils, is an increasing pressure from Congress on the Secretary of Health and Human Services, then applied to all programs but particularly the Councils on Developmental Disabilities – what are you doing? What are you doing with this hundred million dollar – or whatever your state allocation is – to move toward the goal line?

And, of course, the goal line keeps moving, but are you moving toward it? Are you maintaining the status quo? And as a result, the performance standards are up. There are now conflict of interest standards for membership on the Council. There are terms of rotation – you can't get too comfortable.

These, in my opinion, came off of Sarbanes-Oxley from some of the corporate garbage that was going on. This is now nonprofit best practice management, but it's inserted itself into legislation about how the Councils are governed. Most recently, the Protection and Advocacy Systems. Same thing.

They've got to have consumer dominant representation and they have to have term limits on their boards of directors. So you can't have John Smith who's been here 20 years and he's been the P&A, and he knows it well, and he's committed, and whatever. Well, it's time for some new blood to come on.

So now the statute mandates that kind of rotation and new blood. And the most recent set of changes in the year 2000- this act has not been reauthorized in 10 years. It was due up in 2007, probably not even going to happen until 2011 – really sharpened the beam for the Councils.

What it said then and what is the law today is this is about systems change. This is about capacity building, this is about educating policy makers, this is about advocacy, this is about leadership, and this isn't just about dotting i's and crossing some t's with plans.

This is beginning to get what I hope will get reformulated into some very precise laser beam strategy – that there's got to be a coordinated consumer, family directed system of individualized services and individualized supports with the outcomes of independence, productivity, integration.

And we've added interdependence and inclusion. All defined, all measurable, and all of the things that Councils are in a sense now being directed by law, that's your job, and we want to hold you accountable.

I as a taxpayer and an advocate want to hold the Councils accountable for those valued outcomes, and I don't want dollars flitted away, particularly in these tough economic times.

So the Council has gone from comprehensive planning to a smorgasbord of priorities, to a refined list, to targeted priorities to: Should we dance with the legislature? Can we lobby? No, you can't lobby, but you can educate policy makers, and then you can certainly get the word out to others who can lobby.

The Council can't lobby. Okay, that's fine. The Council's only 20-25 people and a handful of staff. Most states have got anywhere between one to 13 million people living in the state. All of them are potential lobbyists, advocates to go the legislature. The Council can make recommendations – that's educating policy makers.

They can show data sets, they can show outcome measures, they can make recommendations about statutory change now. Because in the old days, there was a fear they couldn't do that – they would get their hands slapped.

So the Councils have been given a great deal of authority and, I believe, responsibility by the Congress, to give them the freedom to really get in the face of the governor's office, the governor's budget office, the appropriate committees of the legislature and say, "Excuse me, we have a responsibility to let you know we may be in Minnesota spending only 10% of our money in long-term services for people with developmental disabilities on institutional care. We're spending 90% in the community."

"That puts us fairly high ranked in the country, but when we come over here and look at some of the employment data and we look at the size of community living data, we're not up at the top. We're sort of below the national average, and we need to point that out to you because we can't get carried away with ourselves of believing just because we did this one thing 10 years ago that we can rest on our laurels."

This is a continuous moving target, and I think that's the beauty of the DD Act and that is the opportunity, if used correctly, of the Councils on Developmental Disabilities is to keep in the face, moving forward, getting the progressive agenda out, and most recently getting the self-determination agenda out, which really means the people with disabilities or developmental disabilities themselves articulating what they want and how they'd like resources to be used.