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

I believe firmly that the DD Act must be reauthorized and continued. It has moved us a significant way, but we have a long way to go to achieve those goals of increased independence, productivity, integration, interdependence and inclusion for all children and adults with developmental disabilities. That being said, the law was up for reauthorization in 2007. I don't believe it will happen in 2010, but I hope it will happen in 2011.

My thoughts are the following: One, the mandate that was put in in 2000 needs to be reinforced, that the three programs in each state must collaborate and work together, not at cross purposes, not in competitive roles, and not in, "Well, I don't like so and so, who's the director over there," and that happens, unfortunately in a number of states. "Well, I'll go to their meetings, but I really don't want to work with him or I don't want to work with her."

We’ve gotta get past that. We have resources that many other groups would die to have if we picked a categorical population. I'm not going to name them because we'll get into all kinds of other problems. But there are many other groups who would love to have the resources that go into the programs of the Developmental Disabilities Assistance and Bill of Rights Act between the Councils, the Protection and Advocacy Systems, the University Centers for Excellence and the Projects or Programs of National Significance.

It's big hunks of hundreds of millions of dollars. It may not be enough, we'd like to have more, but I can tell you there are people who'd love to have half of that for their cause. We've got to harness it, we've got to be efficient, we've got to be effective in this climate of finite resources. Money isn't going to come back real quick at the federal or the state level, so the collaboration is essential, and that's my first principle is build on that.

Second, put in shining neon lights: Independence, productivity, integration, interdependence, inclusion across all three programs and get everybody on the page. This is where we're going, it's not up for negotiation, it's not up for discussion.

Every state's at a different place, but the goal line is the goal line for every state and for every individual, and it's not negotiable and we're not going to say the, "Yes, but," and "but you really didn't mean this person," or "You don't understand that person," or whatever.

We now have, for example, 11, 12 states that have no public institutions. Yet, we have a bunch of states that spend over half of their money in institutions. Now the cynic in Allen will say when I'm in one of those heavy institutional states who tell me I don't understand, I say, "No, you're right. I don't understand. Your state has unique strains of developmental disabilities that don't appear in those other 12 states, which is why you have to have these big places that they don't have to have anymore."

And they say, "Well, no." And I say, "Then give me a reason why." "Well, we don't have this," and I say, "Because you don't build the capacity."

So I think the next whole big piece within the goals is to take the Olmstead Supreme Court decision of 1999, which affirmed Title II of the Americans with Disabilities Act and said, people have a right to services in the most integrated setting appropriate to their needs.

We know from research, we know from best practice. Except perhaps for people who have been adjudicated, who are pedophiles – and there's a small group of those who are people with developmental disabilities but it's very small.

We know today how to provide support for the people with the most significant disabilities to have meaningful, purposeful, self-directed, enjoyable life in the community alongside the rest of us. And so it's not that we don't know, we haven't figured it out, we need another trillion dollars of research. Uh-uh.

There are best practice models in many states, not all, there are exemplars around the country, and I believe what the UCEDDs must do now is they must focus on not only the training of the next generation but the technical assistance and the capacity building of best practice in all of their states.

And it's all got to be about most integrated setting. It's got to be about how do we promote home ownership? How do we promote people being in charge of their lives? Individual supports, moving away from facilities.

Part of this is goal oriented, part of it's physical. I believe there are enough data sets now to show that if we want to take a return on investment approach: short-term cost may be higher; we're going to save a lot of money in the out years.

We cannot sustain the current systems in any state for all the people who are on waiting lists and the Councils were mandated in 2000 to begin studying the waiting list. Well, we can study it all day long. I can tell you the answer: It's growing every year because the capacity of finite resources isn't changing, so we've got to change the distribution.

And I think another thing that happens in the DD Act is whether it's the Supports Intensity Scale or some other measure, Councils have got to take a lead role in system resource allocation design.

What does that mean? That means we can't have a flat rate system. We don't pay X for this and Y for this and Z for that, and different states are already into this. But we've got to have a rational way of allocating resources. The state in which I live, Illinois, today has what's called a home-based support waiver for people… children living at home.

And we'll stay with the kids – makes it easier. So if you're a child with a severe disability and you manage to get into this waiver, your family gets a drawdown for selected services for 2 1/2 times the amount of an SSI check. So in round numbers, that's about $1,700 a month for personal support, for some therapies, or whatever.

And it doesn't matter whether you have limited support needs, moderate support needs, or intense support needs– you get the same amount of money. It's just, you come in the door, you get it. You come in this door, you get it. And I have said it's irrational. Some of those families need three times that amount of money, and some could probably do fine with 30 cents on the dollar, but it's going to cost you money to administer, and it's simple now, because it's just everybody gets a check.

Well, they don't get a check, they get a draft, if you will, and a drawdown. It's almost like a debit card for certain selected expenses. And it's cheap, and it's easy, and it's convenient. It is irrational, it is inequitable, and if I had my druthers, I'd probably want to bring a lawsuit about that.

But I don't want it to be refined in a lawsuit, I want it to be a capacity building systems change issue in every state that says there will be a rational way to allocate resources based on level or intensity of support need that then is buttressed by good policy from the Council, by great training from the UCEDD, and legal enforcement when needed from the Protection and Advocacy System all on the same page working toward those same goals, and I firmly believe in most states, we can get a better return on the investment for more people with the same amount of money. That's certainly true in the area of institutions, public and private.

The area that's got to be attacked next, and it's a holy grail for many people, are sheltered workshops. Most recent data, 424,000 adults are in sheltered workshops. The vast majority are people with intellectual disabilities, next group people with psychiatric disabilities.

The typical person in a sheltered workshop today makes $50 every two weeks, about $500 a year. They're generally on Supplemental Security Income. What's the incentive to keep doing that? It costs money for those people to go there. Somebody is paying a fee, somebody's paying support.

Again, this is a long-term strategy, but we must do all three things. We must get the Council to take the laser beam on the policy, using Olmstead and also using the goals of the Developmental Disabilities Act. We must get the UCEDDs taking best practice on customized and supported employment training of staff and families, and we probably need the Protection and Advocacy Systems with the Councils educating providers and families about the fact that you can go to work and keep your Medicaid.

You don't have to have fear. The myths about going to work as an individual with developmental disabilities are rampant in the most educated constituencies in this country, and that is often promoted by people who have a vested interest in the status quo. We've got to make it clear there are all kinds of ways to go to work, and, yeah, you'll give up your welfare check for a paycheck, and you'll be paying taxes and have a real check, and you can keep your Medicaid both for acute care and you can keep it for your home and community-based waiver and support services.

Last piece: Special education. We spend a lot of money in special ed. We started out on a wonderful track of early childhood, lots of work done by the UCEDDs to train staff. I'm not sure where we need to be. We need to take another look at that, the whole issue of natural environments with early intervention and preschool, and then the tough nut.

How do we begin at the one end promoting full inclusion in kindergarten, so that kids grow up together? Some of us have talked about this for decades, reverse mainstreaming at 17 or 18 is a tough thing to do. We've tried it. Little children are terrific. And most of us know kids ask a question. "Why is he using a wheelchair or why does he look funny?" – whatever it is, and the teacher or the teacher aide or the parents gives them an answer or two. "Oh, okay, fine, let's go," and then they play.

Kids aren't born with stigma and prejudice and stereotype - that's learned behavior.
Well, the sooner we inoculate them against the cultural norms, the better off we're all going to be. It's not a genetic defect to carry prejudice. It's something we learn, it's in the social environment.

I want kids to grow up together so that they accept difference, they accept disability. It doesn't mean they have to love them. There are many people with disabilities who are not likable. There are also many people without disabilities who aren't particularly likable.

So I'm not suggesting we have a love-in and everybody holds hands and sings Kumbaya, but acceptance, tolerance, understanding can start way down here much easier. And so how do we use the UCEDD influence and early intervention? How do we use the Councils? How do we use the Protection and Advocacy Systems to really start honing in at the state level and the local school district?

Let's start next year at kindergarten and no more special ed pullout unless it's really justified. We want kids fully included with teachers aides and resources, and UCEDD is going to come in and they're going to do the training, and they're going to work with the regular educators and the special educators, and the lawyers will be there if need be to dot the i's and make sure the IEPs are written correctly, and the Council is going to be charging toward the policy and the systems kind of work.

Start there, and in 12 years, we've got a whole different world because their classmates are the future doctors and lawyers and teachers and special educators and therapists and business people and business owners and whatever, and all of a sudden they're going to have friends who they grew up with – not loved – but who they grew up with, and they're going to have a much better understanding of disability, and they're not going to be, "You want me to hire him? I'd love to hire him, I grew up with him or I know him or I know somebody just like him." As opposed to, "Oh, God, I couldn't do that." It's not quite that bad, but we make employers to be the bad guys in all this.

But the teachers? We still have teachers who say, "If I wanted to teach them, I would have gotten a special ed degree." That's a bigger order. I don't think the UCEDDs can fix that. But for me, anybody who goes and gets a teaching certificate better have 12 hours of whatever we want to call it – Children with Disabilities or whatever – to understand, you know, they're here too and they get to learn, and we know how to do that, and we have tools for you, so it's not them-us kind of stuff.

The other side of that is when they come out. And this one we can start on right now, which is what are we doing in these magical transition years spelled out in special education law and vocational rehabilitation law that says there has to be a transition plan with functional and academic outcomes. Adding those two words 'functional and' just happened in 2004.

Some of us worked on it for 20 years. It was a watershed to say not all the kids in special ed are going to college, four year or two year. Kids with disabilities go to college, yes. Some kids with disabilities go to community college. Some probably aren't going to go to community college.

So what are we going to do to prepare them? My belief, we fund public education in our society to create responsible contributing members of adult society. Um, I don't know, it sort of sounds like the goals of the DD Act. So let's get with the program and say, starting in kindergarten, we're going to talk about careers, we're going to raise the expectations – we may not get there – and then in from 14 to 21 to 22, begin to harness in.

We want outcomes. We don’t want watered-down math books. We want math to be budgeting, opening bank accounts, going shopping, managing your dollars, opening a savings account, looking at a paycheck stub and understanding what that means. Okay? They can teach that. There are ways to do that. It's modified curriculum. It's an accommodation. We need to be doing that.

We don't need to do simulation anymore. Councils ought to be in the face, P&As ought to be in the face, UCEDDs ought to be in the face of every school curriculum that says, "Down the hall, we have the mockup apartment for Johnny with intellectual disabilities to learn how to make a bed." The bed is a folding cot that doesn't look anything like the bed he sleeps on now or may sleep on.

And one of the things we know about people with intellectual disabilities is their disability is they don't generalize well and they don't transfer well in terms of learning. Oh, rocket science – light bulb just went off. Teach people what they need to know, where they need to know it, when they need to know it, and let's do it one time, and let's do it cost effectively and efficiently. So let's have Johnny learn to make his bed at home. Let's have Johnny learn to use the washer and dryer in the house or the apartment house or wherever he or his family live, not the one in the school building. The same with the stove. The knobs are going to be different, it might be gas or electric. I mean we go down the list.

And my favorite is the simulated grocery store in the school where we have the little cardboard Campbell soups and the little this and that, and we pay big money for special ed teachers to then say, "We're going shopping today in the store." Does that look anything like – what's the store here? Kroger's, Safeway – whatever it might be? The answer is no. So how do you take that experience and say, "Okay, he's now mastered the curriculum. Now we're going to the big grocery store with 400,000 square feet. Or we're going out to Costco or Sam's Club or one of those places." It doesn't work.

So that transition curriculum needs to be about life and how do you manage in the real world? How do you take a bus, if you have public transportation? How do you use the paratransit system? How do you get around? How do you cross the street safely?

How do you get to the police department? We could make the curriculum list. It's not hard, but it's functional, it's not traditional academics, and it doesn't have to be one or the other. But from 14 to 22, we have eight years to support, educate, and train those children to short circuit the current adult system.

We ought to do it because it’s the morally and ethically right thing to do. We better do it because it's financially the right thing to do. We're not going to be able to give them $50,000 a year or $40,000 a year of adult supports. We're pumping in $25,000-30,000 or more in school.

Let's raise the accountability standards and let's say from all three of these programs we agree that's a goal, we agree it's a goal in the legislation, it's a goal in our states, and how do we now collaborate with the resources and skills and expertise we have to make that come alive?

So, in summary, the DD Act has to be reauthorized, it has to have laser precision about the words in terms of action, and then each of the three programs have to get new mandates including a strong collaborative mandate to pick a couple of areas, because there's more than enough, and say in the next three years or five years we are willing to be held accountable to achieve this kind of system reform, and we're doing this part at the Council.

The Protection and Advocacy is going to do this part, the UCEDD's going to do this part, and together we're going to make a real difference. And the great thing about collaboration, if our friends at the federal government would get it, is if there's true collaboration mandated, one of the things collaboration does is prevent finger pointing.

"Well, if you had only done your job, we would have gotten this right!" No, it's a group-developed plan, it's a group-owned-plan, and it's joint accountability. So we're either going to sing together or we're going to cry together, but there isn't going to be, "Well, we're the Council and we did our part and you messed up at the P&A," and you said, "No, we're going to meet regularly and we're going to be comparing notes." So that's my vision of what 2011 reauthorization ought to look like to move us down toward the goal line.