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

There a number of accomplishments, and I'm sure I cannot enumerate them all, but I'll try to put a few exemplars of things that I think are of great importance nationally. And I'm going to start with the Protection and Advocacy Systems.

They had their beginning as a result of the Willowbrook expos, and there were several other lawsuits going on in Alabama, Nebraska at the time and quickly thereafter in many other states. The Protection and Advocacy Systems in most states have played a pivotal role of either leading those class action lawsuits or becoming co-plaintiff or bringing in other plaintiff attorneys or corporate pro bono counsel to move the system along.

So that holds out a major role that they have played early on. As they've been given more authority by getting access to records. The Protection and Advocacy System today has statutory federal authority to go in and investigate a complaint at a facility if a resident complains and if that person has no guardian or the guardian is the state and, if you will, there's a whistleblower or somebody says, "Joey's getting a bad time at that place," they go in.

They have full authority to go in. Doesn't matter what the provider – public or private – says, they go in. They have institutional rights under the Civil Rights of Institutionalized Persons Act to go into private/public institutions to investigate allegations of the abuse of people's fundamental rights.

Again, we're not talking about do they have the perfect habilitation plan – we're talking basic rights. And so that entre card has been used very successfully. The Protection and Advocacy Systems for me that have done the best job – and I'm not going to enumerate states – are those that have litigated when they need to litigate and have made their presence well known in the state so that they are taken seriously when they come to the table with a grievance or a complaint – be it individual, be it class, be it systemic – with the knowledge from the government- be it local, state, or federal- that if we can't solve this together, we'll see you in court.

And I think that kind of subtle persuasion works well. This is a litigious society. I'm not wanting Protection and Advocacy Systems to be filing suits every day, but I think a periodic appropriate targeted piece of litigation says to the other side, "We have a worthy adversary here, and when then come talk to us, we need to get a good listening session and get our lawyers in and do all the stuff."

So I think the Protection and Advocacy Systems have done that piece well.  They have played a major role in special education. According to their own statistics in any given federal fiscal year, they do 20,000 special education cases across this country. That's pretty significant.

I don't know how many they win, how many they negotiate, how many they reconcile, but they're representing 20,000 children and their families who are having some kind of issue with the local special education program. 

They have also played a major role in implementation and enforcement of the Americans with Disabilities Act, locally and at the state level. They've been heavily involved in a number of states in the legislature, helping craft legislation, amend legislation, kill legislation because they have legal status 1) they have attorneys on their staff in most cases, and they have paralegals and they have other people as well, so they bring a legal perspective to the field that's well honed because their area of expertise is disability, not just developmental disability, but disability. 

Most recently, and this may go down as one of their crowning achievements, they did a survey nationally of all the state Protection and Advocacy Systems about what is happening in schools particularly around seclusion, restraint, and those kinds of abuses, and what are the state laws and are the state laws being enforced?

They compiled a magnificent report, which is one of the things you can do at a national level when you've got 50 plus parts to you, and they presented that to Congress in January of 2009. It was scathing. Documented, pictures in some cases, reports, obviously anonymity to whoever the students were, but stuff that you would say, "I don't believe this was 2009. That might have been 1980, 1880."

But this was real stuff and not all out in the rural communities. Rural communities, urban communities, metropolitan, wealthy, not wealthy - didn't matter. It was all over the place. That report was presented to Congress and within three months, legislation was introduced in the House and the Senate to put some constraints on the use of restraint and seclusion in schools.

And, sadly, there were opponents to this and not just in the political sense about state rights versus local school district jurisdiction. That one I get. There were entities – I will not name them – in the industry who opposed this. "We don't need this.  We self-regulate. We this, we that," whatever it might be.

Well, baloney. That bill moved rapidly through the House last fall, I think it was October or November, passed about 2 to 1. There were a number of people who voted no. My belief is most of them voted no that it was: What's the role of the federal government? I understand it.

It's a divergent view, but in this country, we respect divergent views. I think there were others who either believed this wasn't happening or I trust the local school board or the school superintendent.  That bill is now pending in the Senate.

Should it come to fruition and go into law, I can say that bill never would have happened, the database for compelling the case to move forward never would have happened without the Protection and Advocacy Systems and their national association to sort of lead the charge and say, "Okay, let's take this on. I'm hearing from a lot of you this is a problem. Let's make it a national issue rather than chip at it every state one at a time."

Because that's a tough hill… uphill battle. So that's one of the things that the confederation, whether it’s of Protection and Advocacy Systems or Councils for Developmental Disabilities or University Centers for Excellence can do is they can aggregate information and marshal that into a national agenda. I think that's probably enough on the Protection and Advocacy Systems.

We could go on, but I want to be clear before I get to the other two programs. Not all Protection and Advocacy Systems, not all Councils on Developmental Disabilities, not all University Centers in Excellence in Developmental Disabilities are created equal.

We know as human beings this is about people. And, as I tell my colleagues at their national level, no different from any other confederation. There's the good, the bad, and the ugly.

And I hope that we can ratchet up the bar for all of them because they all have the same mission, they all have the same congressional charge, but do they play out differently across the states? Yes they do. But in the aggregate, great pieces of work. 

So let's move now to the University Centers for Excellence in Developmental Disabilities. Their charge has changed over time, and what they can take credit for now is in any given year, they are providing pre-service training, that is, to students in college across disciplines.

In fact, I recently was at the University of Connecticut Health Sciences Center, which is the host for UCEDD there, and I got to go to a room and do a couple of days of training with 40 interdisciplinary students: Social work, psychology, regular ed, special ed, law school, speech language pathology.

I mean, I was like a kid in a candy store because we had the full diversity of professionals – some young, some who were coming back to get a master's – who were in the field or choosing to go into the field all in the same classes – part of them together – sharing information about people with developmental disabilities, children and adults.

And so you had different perspectives there. It wasn't like 25 people in special ed, because the UCEDD has really moved forward and it is now prescribed in their statute they must be interdisciplinary, and the ones who are doing it well, are using their umbrella in the university to say, "Come one, come all. We want lawyers to know about this. We want MBAs to know about this."

Do they all do it the same way? No, but the capacity and the potential is there, and from my perspective, if we go back to the goals – independence, productivity, integration- and I'm going to stick on productivity and employability, because that defines how most of us define our lives, including people with disabilities.

Who are the future employers? Well, they're probably a lot of people who are in college now who aren't going to be special educators or social workers or psychologists. They might be the BBAs or the MBAs. They might be just the liberal arts graduates. They might be the architects. The next social entrepreneurs are in there someplace.

Getting them some exposure to the progressive values and thinking in this field is invaluable. I mean, that's really priceless.

The other thing they're doing, is they have been mandated by the change in the law to do capacity building consistent with independence, productivity, and integration and to do research.

And so there is cutting edge research at a number of them, not all of them, but they're doing retraining of existing staff. They're training community provider staff. Some of them are training self-advocates.

Some of them are training families, and there can be some crossover with what the Councils do, but usually this training is a little bit different. But their focus tends to be more professional, paraprofessional.

Some of them have really been called into the action and taken it around the direct support professional, if you will, the non-college degree, the non-sophisticated, the hands-on people who really do the work in this field, in trying to build curriculum, to develop career advancement programs so that people who choose to do this can come in at 10 or 12 bucks an hour might be able to have career mobility, get a certification, get some credentialing, and eventually move on up.

There are stories in a number of states now where that has, in fact, happened. Somebody was going to college, community college, they moved into one of these paraprofessional training programs, got some kind of credential. Went to work at a community agency and lo and behold, they liked what they were doing.

The boss said, "We're going to send you to school part-time, we'll pay your tuition." They got a bachelor's degree, they became sort of program manager.

And I know one young lady in suburban Chicago who is now running the community residential program in an agency, probably managing about 12 million dollars a year. She started out 11 years ago as an $8.50 an hour worker. She got a lot of benefits out of the UCEDD in Chicago, along with her employer.

So I think there are many accomplishments of what they're doing. And, again, they build their network so they can pool their resources nationally, they share data sets, they merge data sets in order to do larger scale studies, and with computer technology now, they're able to say, "Okay, we're all going to collect XYZ. And for a year, let's collect it see what we've got and can we compare data?"

And then there are the Projects of National Significance, several of which are tied to the UCEDDs, where we have employment data, we have residential data, we have expenditure data, and we can compare states across now probably 25 years on where their expenditures are going.

So they make a different kind of contribution from the more legal and strong advocacy. I would say theirs is more into capacity building. And, again, they come in the good, the bad, and the ugly.

Last but not least, the Council on Developmental Disabilities. In many states, these Councils have been the lightning rod for systems change. They have drawn the plans. They have gone to the legislature, they've gone to the governor. They've gone to the executive department. They've gone and said, "We're behind. We need to do this. You need to do this instead of that."

They've promoted progressive policy, not always successfully, but they've done that piece of it, and some do it better than others, and some enjoy it better than others. Many of them still want to fund projects, and we've got to move beyond that.

I know of a number of states where they're funding very progressive projects under their area of emphasis or priority. And I go in and say, "Okay, at the end of three years – because there's really a time limit on the project – then what happens?"

"Well, what do you mean?" Well, how are you going to bring it to scale?" "What are you talking about?" "Well, you're into systems change and creating a project that will benefit 14 people in a state of 5 million is great for those 14 people, I'm thrilled for them, I'm thrilled for their families – that's terrific. But you just spent X hundreds of thousands of dollars to do it. Where's your companion strategy for systems change? For rewriting legislation? For amending a waiver? For changing a state plan?" "

Well, we don't have to do that." Well, maybe you do. And if you're not doing that, then where's the real return? Because, like I say, those 14 people or 12 or whatever the number might be, who benefit from a pilot project, assuming it's sustainable, that's great.

But I read into the role and responsibility of the Councils that there is a systemic component to this. And if you're going to do a demo, then the next step is bringing it to scale or at least larger and growing it.

So that's one concern, and we'll talk about it a little bit later. But some states have done that much better. They do the pilot, they do the demo.

They've already got the companion policy side at work, and when the data are in, they're already in the face of the bureaucracy or the legislature or both, and say, "Okay, now we can show you. This is a better mousetrap. How do we begin? And we want to do this, this, and this over the next three years, and we'll give you a little money to help do it, Bureaucrats, but now we gotta grow it."

And they've been able to do that, done that in supported living, done that in supported employment, done that in some of the early childhood. Some of the best early childhood work has really been done with Councils and with the UCEDDs.

But the Councils have one other responsibility, and it's been throughout, and that's the leadership development and the advocacy. And 32 states at one point were replicating some variation on the Partners in Policymaking approach that was developed in Minnesota by Dr. Colleen Wieck in pushing for leadership development.

Folks like myself at some point are going to retire and post retirement are just going to pass on, and we need that next generation and the next generation. And I've had the good fortune to do partners training in probably a dozen states over the last 25 years.

And so I have a feel for it, and some states used to do it and they dropped it. They said it's too expensive. It is expensive. Leadership development is not cheap. Leadership development yields returns, and the states that are doing it have longitudinal tracking data.

New Hampshire, a state that I know very well, there are now nine members of the state legislature – of the state legislature – who are Partners graduates, they call it Family Leadership. The Assistant Commissioner of the Department of Human Services is a Partners graduate. A member of the Senate who's a mom, who I spoke with in February of this year, plans two years from now to run for governor.

Now, she's political in her own right, she comes from a lawyer family, but she's coming in a year of Partners training, leadership in this field.  It's part of her soul. She can't leave that at the front door when she goes to the governor's mansion. She's campaigned on it and running for the senate in that state.

So I believe one of the major pieces that Councils have done well is to create the next generation of leaders, of advocates in the parent world and now increasing in the self-advocate world, although not enough.

So each of these components has left some substantive pieces, some data sets, some better than others, that have sort of risen to the top and then forced the next level of change.

That's the other thing, is as we go through this reauthorization process, the good stuff bubbles up and people say, "Well, now let's take that from what three states did and maybe we should mandate it or incentivize other states to do it." So that's been another wonderful contribution of the Developmental Disabilities Act across all its programs is looking around and finding good examples, best practice exemplars and saying, "Let's move those up get everybody to want to do that."