Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

Bending the Arc of Disability History Toward Rights, Freedom, Social Justice, and Belonging

Presented by Allan Bergman

Section 9. A Call to Action

Allan Bergman begins this final Section with the powerful quote: "Life is not a program, and a person is more than a diagnostic label." He then implores everyone to raise their expectations about people with disabilities by using language that is powerful, positive, and communicates dignity and respect to all. Mr. Bergman reviews the key attributes of an authentic leader; and urges all key stakeholders to be prepared, engaged and vote in the process of assuring and securing positive public policy changes. He also provides a federal policy agenda for the next several years that includes: fully funding IDEA; prohibiting restraint and seclusion; expanding employment; substituting the term "most integrated setting" for "least restrictive environment;" expanding assistive technology; supporting families; increasing the number of certified benefits planners; expanding supported decision-making; increasing the accessibility, availability, and affordability of housing; addressing the workforce crisis; and reducing the waiting list.

As we look into the future, it's really starting now. When we plan today, we are planning for tomorrow and next year. Our five year plans, or our 10 year plans, don't wait for five years or 10 years, they start immediately. And we've got some real challenges as we have discussed. The current models and programs are not sustainable even in a better economy. And the economy is not good. And it appears we're highly likely, and I hope they're wrong, to be in another recession later this year or in 2023. And the financial debt of the United States government is the largest it's been since the 1920s, it's huge.

Waiting lists we've talked about are huge and getting bigger, and people with developmental disabilities, as we saw, are living longer. We must change, and I'll call it our business model, our supports and services systems. It's no longer about paper, and files, and compliance, and checklists, and the auditor saying, good job, did anybody's life improve? Oh, we don't have to ask that. Now we better ask the question, and it's not just about outputs, which is counting, we're talking about outcomes. Not how many units of service did you get, what did you get, and did it make a difference?

Efficiency, effectiveness, equity, and fairness. We have so many tools in the toolbox that we have discussed that we didn't have in 1848, that we didn't have in 1948, we didn't even have in 1975 when special ed got started, and we've had some since 1990 when the ADA got passed. We must keep up with what those are, and make sure people know what they are, and how to use them with fidelity. Not, oh, I watched the one hour webinar, I'm now a guru in whatever it might be, 'cause they won't be and then they'll mess it up, and then they'll say, see, it really doesn't work, let's go back to the good old days. Not acceptable.

And when we talk about money, there are lots of people where their individual plans and the DD waiver are $75,000, $80,000 a year, and we just throw those dollars around. The median household income, not individual, family household was a less than $71,000. And that's a typical household, probably of three and a half or four people. How do you think it would play on the front page of every major city newspaper that we are spending family household incomes to support one person to live in a group home, go to a day program, have transportation, and a service coordinator case manager? And I'm not here to say there aren't some people who have intense support needs that might even cost more than that. But that's a lot of money, and we just keep throwing it around.

Well, we gotta get more money to solve the wait list, all right. No, we have to get to the new normal now about accountability for outcomes. We must measure them and they must be cost effective. And all the research tells us this is done, can be done, is doable. It's not pie in the sky anymore. We just need to get it out there and everybody to use it.

We've gotta have equity and resource allocation. We have to have incentives. I recently did some work in the state of Colorado, and my colleague Lisa Mills has done this in a couple of other states where we're incentivizing in the employment payment system, not only pay for performance, but keep ongoing support.

And if the person starts at 10 or 12 or 15 hours a week, oh, might they go to 20 hours? Might they get a pay raise? We'll give you a bonus payment. A real business model, not a human service charity fee for service, keep billing for quarter hours. And states are liking this, and providers are liking it, 'cause it's a lot less paperwork.

We're gonna document outcomes, not check every time a quarter hour, a quarter hour. Oh, and then we got a bill for that quarter hour, $750 or whatever it is. So we've got to make this shift and it's a good one. There are no losers if people know what they're doing. And those models or pockets of excellence have to be scalable. That's why we need the research, that's why we need the studies, we need the best practice, we need the conferences, certainly now with virtual, we can do a lot of stuff. Get in the car and go three hours to another city, or another state where they're doing something that's really respected, and go look at it, spend the day there.

Most of those providers are gonna be happy to have you. Most school districts will be happy to have you and see how they are doing inclusion, how they're doing positive behavioral intervention supports. It's happening in some places, it just needs to be everywhere, and not the exception to the rule.

If there are major outcome disparities, states need to start looking at that and asking why. Why is school district A doing so much better in inclusion or transition outcomes measured by the indicators for the feds, and school district C isn't even at the half that level. Are the students that different? Probably not. Are the staff not as well trained? Probably yes. Let's get some training and technical assistance in there.

Why should a child be punished or a family be punished based on the community in which they live? That's not equity in any way, shape, or form. And we gotta quantify it. And state agencies and community providers have gotta come together and do what I call transformation. Not just transition and tweak here and tweak there, restructure like the agency without walls, like going from group homes to supported living. It's gonna look different, it's gonna feel different, it's gonna be funded different. And guess what, it's gonna be better.

And that's gonna take infrastructure, that's gonna take some front end money, and capacity building, but it's got to happen. And we must address the growing DSP workforce crisis, which has been around for a long time. It was just exacerbated by the pandemic.

And we have some new data from the Institute on Community Integration in Minnesota, and the National Alliance of Direct Support Professionals. And you can go to their website, but I've gotten their slides and with their permission just to show you what has happened during the pandemic to the DSP workforce, which based on their studies and ANCOR, and others in the last year, were running about a 38% vacancy in any given month across this country, and a 50 plus percent turnover rate.

How do you provide stability and consistency to anybody, let alone somebody with an intellectual or developmental disability, who counts on that person for support when they're going through as a revolving door? You get to know them. Oh, and next week, sorry, I'm leaving. Or three shift staff and they change the shifts, and all of that, that's not consistency, that's not continuity.

Talk about lack of dignity, lack of respect. Yeah, we'll just get another warm body in here. We have got to do better.

And what we see here is what happened as the vaccine came out, and what happened to wages, and how many people got paid time off. And interestingly enough, 65% didn't require a vaccination. In many states, the health department made it clear that congregate facilities like nursing homes, yes, but somehow group homes got exempted. So a lot of providers that wanted to do this weren't allowed to mandate it because the health department says you don't have to, so that was part of the problem.

And so wages went up a little bit. Some people got extra pay, some didn't. Some got some bonuses, some didn't. And you can see it very tremendously. But basically, these people were really pushing hard to stay at work who did stay.

And so you look at what happened to their hours. And again, this is from the field, this just came out about a month ago. I think it came out in September of 2022. How the hours worked were affected. And you can see that most people had to work some additional hours. Fine, they got overtime pay that cost the system more, the feds were nice, they put some extra money in because of the pandemic. But look at this, 59% felt pressure that they had to work overtime. They had to pick up extra days and hours because there were vacancies. So instead of working your 40-hour week, I've met some of these folks, they were pushed to work 55 and 60. This is not easy work. This is not just sitting at a desk looking at a computer. You're preferably doing interaction, you're doing support, whether it's in the home or out in the community, or something meaningful, and you're told, "Sorry, you gotta work some more. We'll pay you overtime." That's pretty exhausting.

So look what happened to the people supported based on what their DSPs had to say. Okay, this is pretty scary. These are all negative things that happened to the person with a disability because of the pandemic, the shortage of staff, and the overload.

Decreased services, all right. Less time in the community, and more depression. Look at that. 56% of the people they work with, they felt were depressed. More anxiety, 56%. All right. I mean this is painful that not only did the workforce suffer, but so did people with developmental disabilities, all right.

And then what happened to the workers? 'Cause we're talking about the workforce crisis. Look at these numbers, ladies and gentlemen. They are frightening to me. Unbelievable. 40% of the sample of direct support professionals said they're depressed. 56% high anxiety, losing sleep. Go down this list, how does that make them feel, and how are they the next day when they go back to work?

So we've got a real crisis here, not only at the workforce level but at the support level for the person who's supposed to benefit from these folks. And work-life balance, much worse or worse for almost 47%, some people felt it was a little bit better but not most. And look at this. New staff, some qualified, some not for the work, not qualified. So over half were either minimally or not qualified, but they were hiring warm bodies because they were desperate. And I'm not being critical of the providers, you've gotta get something in there to do something, but this is from their peers.

One of the good things is that we did learn how to use technology, and that may turn out to be something we can take advantage of in the future. Some people were using it more and that's all good. And you'll see here about the use of technology on the impact of work as well.

But again, somewhat positive and very positive, over half. Probably what happened in the other half is there wasn't enough training or technical assistance. But again, we know it can work. That needs to be part of the training curriculum in the future for direct support professionals, so we can keep learning and going.

And this one is kind of surprising, and it may be the sample, because there's a belief that the bulk of the DSPs are women of color. But in this sample, the vast majority are white. 82% women including transgender women, and the average age is not a young kid, they're 47 years old.

So that tells us some things about recruitment and training, and making this position more attractive, not just financially, but no different than we do for people with disabilities, there needs to be career ladders, there needs to be growth opportunities for people who enter as a direct support professional.

And there are curriculum to do this between the Institute on Community Integration at the University of Minnesota, College of Direct Support, and the National Alliance of Direct Support Professionals, and their virtual academy and badges and hierarchy. The tools are here, they're well respected by many national organizations, yet most states aren't mandating them, they're not using them. Why not? Why are we afraid of having levels of competency? Why are we afraid of having productivity of our workforce, whether it's DSPs, or employment specialists, or special ed teachers, or go down the line? We know what best practice looks like, why don't we want it? Why aren't we willing to pay for it and raise the bar?

These are the challenges as we go forward. We've talked a great deal about Medicaid, and Home and Community Based Services, and the growth and expansion, and community supported living arrangements, and most recently, the new settings rule, and person-centered planning. But we need to spend a little time looking at Medicaid and money.

Medicaid is the single largest budget item in every state in this country because it has federal match and state match, and it covers healthcare for low-income kids and families. We've had the option to expand that under the Affordable Care Act, which over 30 states have done. We have nursing homes, we have hospitals, we have lab, we have x-rays, we have therapies, and we have Home and Community Based Services and supports for people with a variety of disabilities, and for seniors or elders.

So it's a lot of stuff in this bucket that got started in 1965, and the same with Medicare. So new data recently published by the Center for Medicare and Medicaid Services, and they're always a couple of years behind because they have to gather all the stuff from the states, they have to make sure all the claims have been processed, states are allowed an extra year to get bills in if things get caught and whatever. So when the data do come out, they're a little old, but we know that they're like 99.9% valid and reliable.

So this is the map of the population in this country of people getting either Medicaid, or what was also added later called, the Children's Health Insurance Program, or better known as CHIP. So you can see why distribution among the states probably reflecting income status of the overall population in those states.

So it's different and that's just the way it is. So let's show you the money now, and where is it, and what does it do? I love this screaming, Show Me the Money. It matters and it drives practice. So let's take a look.

In 2021, the total enrollment was over 80 million people, ladies and gentlemen, that's just about one fourth of the United States population. So it's up from the prior map. And look at the amount of money, that's not chump change. $633 billion.

And here's one that most people don't know. Medicaid covered 42% of the births in this country in 2019. That's correct, over four out of 10. And managed care has grown a great deal, and almost 70% of Medicaid beneficiaries, at least on the healthcare side, are in some kind of a managed care plan, because states do have the option to do that, and they can mandate it if they write a plan approved by the federal government.

So here's another look at the population demographics by age and by gender. A little more female than male, that's 'cause we have a lot of low-income single moms. And you can see that a big chunk is that population of folks between 21 and 64, that's like 38%. And then there's a bunch of young children, and 7% are people over 65. And you can see the percentage in institutions based on age as well. And this is a couple of years old, but relatively current, all right.

Here's the kicker one. Some of you may recall several years ago there were attempts in Congress because of the runaway costs of Medicaid as an entitlement. And you need to hear these words, they are words spoken by members of Congress on Capitol Hill regularly, and they wanted to cap Medicaid, they wanted to block grant Medicaid, and cap it and say to the states, enough is enough. And in a block grant what they were gonna say to the states, don't let this happen, is here's a bucket of money, you decide how you wanna spend it, minimal strings attached. I can't even begin to think the kind of advocacy we would have to do to try to keep, let alone advance what we have accomplished to date. And the per capita cap is no better because they were gonna cap the amount of money per person based on categories, and then adjust it for inflation periodically maybe.

So here are the real numbers, and again this is several years old, but I share this with you to appreciate how much we use Medicaid. So in the top line what you have is the average amount per person in each of the categories. So you can see non-disabled children, pretty cheap, these are the low-income kids, family on welfare, AFDC, Aid to Families with Dependent Children. Adults 20 to 64 without disability, $5,600.

The expansion group about the same under the Affordable Care Act. People who didn't have health insurance were able to access Medicaid. And then seniors, $15,000, quite a bit higher per person. And then come to us. And this is persons with all types of disability. And this is an accumulation of both their acute care, mental healthcare, prescription drug, and long-term services and supports, because many folks with disabilities are not getting long-term services and supports. Remember, we've got a waiting list, okay.

So then look at the dollars on the spent per population. And you can see who the biggest spender is. $216 billion for people with disabilities, yet only 11% of the beneficiaries. $88 billion for folks 65 and older, only 6%. So when you put those two numbers together, people with disabilities are using 38.1% of all the Medicaid money for 15.3% of the Medicaid population. You see the disproportionality here. And the same is for seniors. Seniors have 15.5% of the Medicaid expenditures for 8.3%. You put those two together, 53.6% of all Medicaid dollars are spent on 23% of the population. If there's gonna be a cap, if there's gonna be a block grant, who's going to get short shrifted?

You can't do much to cut the costs for the low-income kids, and the single moms, or the low-income families, they're already pretty darn cheap. Look at that, $3,800, $5,600. We must not allow a per capita cap, we must not allow a block grant, but we must do a better job of how we spend the money as we have been discussing on accountability for outcomes, and not just compliance with check boxes. So this is a powerful thing.

And then we're into the dually eligibles 'cause a lot of people get Medicare and Medicaid. And you can see there's quite a few people here in numbers and in percentages, and some people do get both. My daughter Dina gets Social Security Disability, and Medicare as part of that. But she gets Medicaid also as a secondary and for her Home and Community Based some of the in-home support supported living services. So she's in both pockets, and that's a lot of people as well.

And you can see that there's a lot of people under the age of 65 who are what we call dually eligible, get Medicare and Medicaid. And that gets even more complicated for the person navigating both systems, and Medicare should be the primary payer, but they don't pay for Home and Community Based Services and supports. So then you kick in over here, and Medicaid can be a copay, sometimes on Medicare, 'cause there's always a copay with most Medicare. So it's lots of fun to try to manage all this stuff, but it does work.

And then here's a map from 2020 to see the disbursement. And as you can tell, again, it's very different from state to state how many people are dually eligible, and that's probably more due to economics than demographics of the population of people with disabilities, or who became disabled due to work.

Again, let's go back. I've shown you several other Greek and Roman philosophers, Heraclitus, 535 to 475 BC, "The only thing that is constant is change." Please hear his statement. None of us can afford to get stuck where we are today. Even if we are doing best practice, best practice evolves, our focus must be on that person, that individual, and creating every opportunity to build quality outcomes in their life based on preferences, strengths, interest, informed choice, leading to increased independence, interdependence, productivity, integration, inclusion, and belonging in the community. And we have to understand we can't get stuck.

We had an example in this country, not that many years ago, a place called Macomb Oakland Regional Center was started in Michigan by Jerry Provencal, and Dave, blocking on his last name but it'll come to me. And they said to the Governor, "We don't wanna open a new institution, we'll use it as sort of an assessment place, short term, we're gonna build community." And so they did. They were the envy of the country, strings of group homes, day programs, all of that stuff, which at that time was best practice. People came from other states, people came from foreign countries, and they were really excited that they were doing nifty stuff. Except, other people in other places were taking the next step and the next step because they realized they might do something different or better. And finally, some of us said to our colleague, Jerry, "You need to go take a trip to this place." And I mentioned Madison, Wisconsin earlier, "And go see what they're doing over there in non-group home." He said, "Why do I wanna do that? Everybody's coming here, they tell us we're wonderful."

And I said, do yourself a favor. You're a smart guy, you wanna do well, you've done well, but doing good isn't doing well. And he went over there and he came back and he said, "Oh my God, we got stuck." And then he began to dismantle. And others have taken over since he retired. But because it was Michigan, he came up with this quote or I did for him, "Today's model of excellence is tomorrow's model T." Don't get stuck on a model, don't get stuck on an approach, don't get stuck on innovation, 'cause there's gonna be new innovation.

In the last couple of years, I've been told over 200 new apps because of the pandemic, many of which are applicable for people with disabilities. That's not my scorecard, but I'm glad to know it's there. And people in this field need to know that, families need to know that, teachers need to know it, direct support professionals need to know it, because that's a whole new set of tools in the toolbox to give people more self-determination, more control.

So please remember, in spite of this wonderful evolution and this alignment, the values probably won't change and don't need to, we can tinker with them. The approaches, the strategies, and the interventions will continue to improve, and we must let go and keep moving forward to do this.

And at the same time, an older quote, but not that old from President Kennedy, "The great enemy of the truth is very often not the lie, deliberate, contrived and dishonest, but the myth, persistent, persuasive and unrealistic."

Ladies and gentlemen, we still are loaded with mythology in the field of disabilities, and particularly intellectual or developmental disabilities by the stigma of the label of the diagnosis, the IQ score, whatever it is. People culturally learned, this means that.

And a recent new colleague of mine had an experience that we could call positive, but it was also stereotypical. This gentleman is now working for the National Down Syndrome Society, nationally as their employment specialist. And he started in January and in March or April, he gave me a call and said, "I'm in a quandary." I said, what's the problem? He said, "I had an employer call me earlier this week from a Midwestern state." He didn't name the employer and that's fine. "And they're bringing people back because of the pandemic. And they brought back this worker who experiences Down Syndrome, who's been one of their better workers, and he called the national office."

And you know Joe is back or whatever the person's name is, and he's really great and I want you to hear what he said. "Can you get me another person with Down Syndrome?" Okay, that's a different stereotype, but it's like they're all the same. So we'll send you Sam and Sam's gonna be the twin to Joe, as opposed to Joe is Joe who happens to have Down Syndrome, and I don't have a carbon copy of Joe, okay. So it's sort of the good news and the bad news. We've got some people working, and he had a similar experience a few days later with a different smaller company in the Northeast where it was a woman calling about a female employee. But the basic same thing, I need another Mary, okay.

So we've made progress, and I'm thrilled that the employers are happy, but we still need to get clear, it's individual. No two people are the same because they have the same diagnosis, anymore than two people of the same height, or the same weight, or the same eye color, and go down the other care. It's important to know it, but it doesn't define you.

So the changed thinking has gotta continue, and it has led us to changed public policy. We used to have this old model, and it still exists as you can tell in some states 'cause we've still got a lot of institutions. People need to be taken care of, they can't work, they need 24-hour care, they've gotta be safe, they're a burden, they're helpless, they need to be pitied. That's all the old school stuff, but pieces of it are still there. And then we need to go to this. People can be self-sufficient, they can work and pay taxes.

Oh my God, they don't need constant supervision. They can build relationships, they can be valued as family members, but we must have high expectations and provide the support that matches individual needs. And remember, life is not a program. And to quote Mr. Shakespeare with our laws, "We need to suit the actions to the words." The laws are quite good as you have heard and seen, and they're in alignment. But a person isn't a program and isn't a diagnostic label. It's an individual human being.

And we've talked earlier about dignity of risk. I came across this one recently from President Lincoln and I love it. "You cannot help people permanently by doing for them what they could and should do for themselves." Think about how often we do it to the person, we do it for the person. And then we wanna know why they have what a book has been written on called "Learned Helplessness" because we have never allowed them to be assertive, to self-initiate, to do for themselves. So thank you from Mr. Lincoln for helping us.

And then for those of you who wanna be more contemporary, JK Rowling at Harvard, I guess she was okay, they let her talk there. Listen to this quote, "It's impossible to live without failing at something unless you live so cautiously that you might as well not have lived at all, in which case, you fail by default." That was at a Harvard commencement address 14 years ago. It's a different version of the Lincoln dignity of risk. It is part of life. If you're in a cocoon all of your life, it's not really life, it's part of living. So that's what we have to get to do.

So as we have been discussing, we spend a lot of money, particularly Medicaid money, but we spend a lot of money on special education, and other supports and services for people with disabilities. But the question is, what's it buying? And I was taught a number of years ago, the ultimate test of policy is your budget, or in simplistic terms, put your money where your mouth is. In our case, there is money, and the words of law, as you have heard, are quite strong and in alignment. But they're not happening every day for most people with developmental disabilities.

So as I said with Mr. Shakespeare, "We've gotta suit the actions to the words." They are hollow promises for the vast majority of people, as you saw, the vast majority of people with intellectual disabilities are minimally included in public school as late as 2018 data. 43 years after the law was passed, we still have thousands of people in state institutions, we have tens of thousands of people in six and eight-person group homes, we still have many people in day programs that are segregated, a smaller number in sheltered workshops or sub-minimum wage.

So we've got to shift, and we've got to talk about valued outcomes, accountability, and incentives. Talking about return on investment to the public taxpayer, be it local dollars, state dollars, federal dollars, or any combination thereof. It's a lot of money and it doesn't need to promote dependency.

So what do we value? Well, the law tells us what to value. What do we owe the taxpayer in society? Something to give back? So are the outcomes that we're looking for really quantifiable? And are they compatible with the DD Act, IDEA, WIOA, the ADA, and now the CMS settings rule? And the answer in most cases is not necessarily so.

So we have to learn and we have to continue to go forward. And as we do this, we need to pay attention to our language. We are offended by those old words: handicapped, idiot, imbecile, moron, crippled, we can go down the whole list. But recently I came across a book called "Words That Work, It's Not What You Say, It's What People Hear" by Frank Luntz. Now some of you may know who he is. He is a political script person known on the more conservative Republican side. But again, open eyes, bipartisanship that's not relevant to this book. He happens to have a PhD in Communication. That's why he's good at what he does.

So I share with you this quote about our language, and why language is critical in our internal discussions, but even more critical in the public and doing legislative advocacy, whether it's with school board members, state legislators or their staff, members of the Congress or their staff.

"You can have the best message in the world, but the person on the receiving end will always understand it through the prism of his or her own emotions, preconceptions, prejudices and preexisting beliefs."

Ladies and gentlemen, that tells us volumes about the power of communication. Remember many of the people we are talking with grew up in a culture of those negative terms, low expectations, separate in school, and all negative references. And so you open by saying something using one of those terms like Down syndrome, sorry, in their head, that's mongoloid idiot. Cerebral Palsy, that's a hopeless cripple. We can go down this. These are not terms I use, but we need to appreciate the context in which most people hear them.

And then we come in and we start talking about employment and supported living, they think we are loony tunes. Or we have parents sometimes who are desperate coming in talking about they need support for this poor helpless child. And then the next hearing's on employment, we have got to get our messaging clear. And that's what Dr. Luntz is good at, and we need to take that lesson.

Think about how the listener is going to hear what you say. And if it's not going to say what you want, don't say it. Rewrite your script. And so the power of language is powerful, and I thank Dr. Luntz for helping me reinforce what I've been saying for a number of years.

Words create images. Values are formed early in life. Stereotypes, stigma and prejudice are learned behaviors. They're not taught in a textbook, our culture teaches them to us. We must use terms of dignity and respect, that's why we talk about People First. Person-centered planning, one at a time. Individualized Education Program, Individualized Written Rehabilitation Program. Those are all the things that are really important as we talk about people. We don't want pity and charity, the poor helpless one.

Think about some of these words, and again, what they say to your audience. Handicapped, remember cap in hand, beggar from British society. That's a very demeaning term, we don't use it anymore. Wheelchair bound. Think about that. So we got somebody in a seatbelt and a restraint, and they're in their wheelchair. They never get out of it, they sleep in it. I don't know how people hear that. How about uses a wheelchair for mobility? Oh, okay.

Most vulnerable. We'll come back to that one in a minute. Special needs. Oh my goodness, some of you know it's one of my most favored, unused terms. It's a cop out, it's a euphemism. There's literature on it. All of us have special needs, what does that say the word is disability. It's the Individuals with Disabilities Education Act, Vocational Rehabilitation for people with disabilities, the Americans with Disabilities Act, Home and Community Based Services and supports for people with disabilities and senior citizens. That is the word. I'm sorry if you're not comfortable with it, but it's certainly better than a lot of those other words and we need to use it.

And high functioning, low functioning. Oh my goodness, what does that mean? Today the term is people who need less support, people who need more or more intense support. Because you say the word low functioning, and right away, oh, that's a drag that's a dependent, that's somebody who's helpless. That's not a helpful term. Some people need more support than others, that's fine. So what doesn't mean they can't be productive, doesn't mean they can't contribute, all right.

And again, compassion. Look up the definition of compassion. Compassion generates pity. We're not looking for pity. We've played that game before. How about empathy? Empathy is a much powerful word. Empathy says, I can relate. That could be me in your shoes. And remember, as Senator Dole taught us, it's an open enrollment club for disability. Anybody can join at any time and probably will, not only through birth, illness, accident, injury or age.

So we don't want compassion, we want empathy, because that could be you, anytime, any place, whatever.

And mental age. Oh my Lord, thank you Stanford, Benet, and IQ tests. That was never what was intended, and that has been distorted. Somebody who is 25 years old, and has 25 years of lived experience might have a lower IQ whatever that means, it doesn't mean they have a mental age of a five-year-old. Sorry, we've got to stop using this language. It doesn't promote dignity and respect, and it certainly doesn't promote inclusion and person-centered planning.

So I mentioned the word vulnerable, and I decided to look it up because I was recently in a state where they were reviewing the state budget. And I could not believe how many of the different state agencies, when they were going through their budget after the Governor's budget address were talking about, and we've dedicated these funds for the most vulnerable. We've dedicated this set of funds for the most vulnerable.

So take a look at what it means. Those who are relatively or absolutely incapable of protecting their own interests. Oh my, we're right back to 1848. We better lock 'em up and put 'em in the institution. Insufficient power, intelligence, education, resources, strength, or other needed attributes to protect their own interests. And that's from biomedical research. Is that the image we want to create for somebody with a disability of any kind? Somebody with an intellectual disability, a developmental disability. That's not how I see my daughter. That's not how I see my stepdaughter. These are the kinds of things we want to see.

Oh my God, people even getting married. How could that be? Well, it's happened. And the person in that picture getting married is Liz Weintraub, she lives in Maryland. I happen to know her, have watched her grow up. She is married and her husband Phil.

And Liz was the first person with a developmental disability, thanks to Senators Harkin and Casey, who actually did an internship in the United States Senate. Oh my God, how did that happen? Because of networking, and people knew what she could bring to the table. And she now works for the Association for University Centers on Disabilities, and does training, and does posts, and does interviews. Yes, she is a woman who experiences disability, intellectual disability. She has some speech disability, not much, but guess what, she's productive, and contributing, and married, and has a husband. I think they're married 10 years now, maybe 15. They chose not to have any children. Nobody forced them, they just decided they weren't gonna do that. Some people with disabilities now are getting married and having children. Oh, but it's not doing what Buck v. Bell said. They're not having degenerative offspring, they're offspring or garden variety neurotypical kids, 'cause we know that genetics is not a major issue here. So these are the images we want going forward.

And we now have a wonderful new definition of disability, and it is in three federal laws with minor tweaks. It is in the Developmental Disabilities Assistance and Bill of Rights Act. It is in the Individuals with Disabilities Education Act, and it is in the amendments to the Americans with Disabilities Act. And these words are wonderful. This is the thought that Senator Dole gave us, but now it's in law for all of us.

Disability is a natural part of the human experience. Remember, it can happen to any of us at any time. It no way diminishes the right of individuals. That's what the ADA is, a civil rights law to live independently. Remember that's choice and control, not foot-loose and fancy free. Self-determination, choices, okay. Contribute to society, pursue meaningful careers, enjoy full inclusion and integration in the economic, political, social culture, and educational mainstream of American society. We couldn't ask for better than that in our federal laws with all the other alignment.

So what do we need to do now? Well, this is a quote from the League of Women Voters. It's a Call to Action, our action must persevere. We can't lose ground and we must continue to move forward. And I love this. "The strength of our democracy depends on citizens getting involved, and engaging our government."

At the beginning I talked about advocacy is a participatory sport, it is not a spectator sport. You just don't read the news bulletins, and the legislative alerts and say, oh well I know somebody's gonna take care of it, I won't worry about it. We have lots of work to do.

And this is a list I put together of all the things that I think need to be happening at the federal level, on top of implementation at the state level that would make life easier, and help us implement all the things that are in the law.

One, we have got to have full federal funding for IDEA. There has been legislation introduced to get it up to the 40% promised back in 1975, and it'll take 10 years, that bill needs to pass.

We must expand inclusion starting in preschool, daycare, and then moving into K through 12, so that the norm becomes at least 80% of the day for inclusion as opposed to the minimal amount of people that get that today. We know how to do it, we have the research, we need the training and the technical assistance to make it real in the life of every child and every school.

We must prohibit seclusion and restraints in all schools, and staff training money for non aversive techniques.

I was involved in some legislation in a state about two years ago where the legislator, and I can go public, this was in Illinois. Gentleman was willing to go public on this issue because he still has post-traumatic stress disorder from having been in timeout seclusion as a youngster with ADHD. He now has a master's degree but he still has a ADHD. But he says he still has post-traumatic stress disorder of being put in that room or that closet.

Unfortunately, when he tried to ban it, it got clobbered by lots of other forces because they said you're gonna force us instead to call the police. They haven't had the training in non-aversive stuff. So if we're gonna prohibit it, there must be money and time for teachers to learn the wonderful repertoire of all kinds of non-aversive interventions, so that people who are experiencing behavior difficulties can be settled down without having to restrain them, throw them on the floor, and lay on top of them, or call the cops and put handcuffs on.

I know it doesn't happen in your state, just all the other states. No, it does happen. And the volume is high. It's even disproportionately higher for students with disabilities of color. That's recent information from the feds. We have gotta stop the stigmatizing, and come up with the best practice 'cause we know how to do it.

Next one, we must expand opportunities for students with disabilities in the trades, through voc ed, community college, training, internships, apprenticeships, with accommodations under the ADA and 504. I don't know about your community or your state. Most states and communities today are begging for carpenters, plumbers, electricians, HVAC, tool and eye workers, HVAC, car mechanics, assistance, apprentices, and they pay well and they have career advancement. Why aren't we opening up those opportunities to all students, including students with disabilities?

Not demeaning four years of college education, but for some students they don't need to do that, and they might not be able to do that well, but they could find a craft that they're really good at. Start with an apprenticeship, learn it, and get going and make a very nice living, and maybe even get health insurance from the employer, and just need Medicaid for their long-term services and supports. What a novel idea, and be paying taxes, and paying into FICA, so later on they'll get Social Security.

It's real, it's not fantasy island. We have to open up our eyes. We have to amend, in my opinion, the Individuals with Disabilities Education Act, and replace the well-intended term of least restrictive environment based on a continuum, and replace it with the language from the ADA of most integrated setting. And that way will get the message clear that inclusion is the preferred place, and you have to show why not. And if you're not using the tools, that's the school's problem, not the student's problem.

And we have to expand funding, and access to community mental health services, and mental health services and schools. We learned this painfully during the pandemic, but we must attend to it. But guess what? There is still stigma around mental health issues and mental illness, 'cause we use that, oh, you must be crazy. No, you saw the data I showed you a little while ago on DSPs, experiencing anxiety and depression, the people they're working with, anxiety and depression.

We also need to make sure that mental health services can accommodate people with intellectual disabilities.

There's a body of research, there's expertise in this at several universities, but it's not well disseminated, and people don't even know it exists. It needs to get out.

We talked about technology. I gave you some examples of the alarm clock and the person working at Target. But we have to expand the scope of the Technology Assistance Act with responsibility, give it to it, for ongoing education and training of professionals, and advocates, and family members with an emphasis on augmentative and alternative communication and smart home devices.

This is the world of liberation, this is the world of communication, this is the world of self-determination, and the tools are here, and special ed has to pay for them if they're in the IEP. Medicaid, if it's an assistive technology in the waiver will pay for it. They'll even pay for home accommodations in most states. But you need to be sure it's there, and then you need to know what it is and how do you get it. Even if it's got a $15,000 limit or something, you can get some stuff started.

We need to move from the old school of family support, which I was involved in many decades ago, to supporting families legislation for funding in all states based on recent work this spring, of the Supporting Families Summit that was convened by the state DD Directors, Administration on Community Living, and the University of Missouri, Kansas City. UCEDD building on the success of this wonderful tool called Charting the Life Course. If you haven't seen it, Google it and check it out. It begins getting you to think outside the box with high expectations in birth to three.

22 states are in a community of practice, they're using it, their service coordinators are trained in it. Providers are being trained, educators are being trained. We're raising the expectations, and I'm thinking perhaps it ought to be an amendment to the DD Act, but that's up for grabs. But since ACL is proud of it, it probably needs to stay in that house someplace, and that would make sense as a new section.

And whether that became something that was done separately, which I think it could, it could be a new section, or a new title, remains to be determined.

Next, we need to look at the DD Act. It has not been reauthorized since 2000 for various political reasons, and we need to be sure that all the language and best practices are in there. And I would suggest no different than there's a mandate that every state must do self-advocacy, training and leadership, that we ought to embody Partners in Policymaking®, started in 1987, 35th anniversary this year as a mandate also. And that it be done again with fidelity as opposed to some of the less than fidelity processes that are in existence, and some states that don't do it at all.

We need ongoing family leadership tied with Charting the Life Course just as we need self-advocacy leadership.

Next, we talked about the workforce incentive planning assistance and benefits planning. It's gotta be expanded. It's operating on a shoestring so that there's enough of the competent benefit planners to support individuals entering employment, and enhancing their careers. That must happen and we need it sooner than later because if you don't do that before you go to work, you could end up in real, real trouble.

Next, on the direct support workforce crisis, we must establish a standard occupational classification in the Bureau of Labor Statistics for the DSP, and really professionalize it. It's not a caregiver, it's not a caretaker, it is a Direct Support Professional. We need to standardize the job description. Great work has been done by ICI and NADSP, the National Association of Direct, the Alliance of Direct Support Professionals.

There are bills pending in Congress to do this. We need it sooner rather than later. And we must make this a valued position to help the crisis by giving it status, good pay, and a career ladder, and then make it attractive for people to come into at 20, or 22, or 23 years of age. Some states are doing exciting stuff at the Community College level now, and even with high school kids to try to teach them how to do this work.

Next, we have to deal with the Medicaid Home and Community Based Service unacceptable, huge, and growing waitlist. Maybe we need to increase federal funding with a higher federal match. Some people have said we need to make it an entitlement. You heard what the Republicans majority on energy and commerce had to say about, we have gotta make this available and stop the waiting list. So I think there's a lot of consensus this needs to get done. How to do it, remains to be determined.

Next, we've talked about the fact that subminimum wage earners have decreased tremendously, but we still got quite a few people. We need federal legislation now beyond what the states have done to phase it out. But with funding to states to create the necessary infrastructure to assure positive outcomes of community inclusion and belonging, and integrated employment. Fear here, and it happened in some states early, is instead of doing subminimum wage work and moving to real work, they ended up going to the segregated day program. That's even more regressive. We have to build the infrastructure so people can move through customized or supported employment, or self-employment into real jobs for real pay.

The Medicaid buy-in, which was passed in 1999, allowing states to raise income and asset levels for people to get Medicaid when they go to work or are working, particularly again for HCBS, maybe needs to be federalized 'cause the number of states haven't done it, so people in those states don't have that opportunity, all right.

So we need to review and revise the definition of disability and Substantial Gainful Activity for Social Security-administered benefits, and incentivize employment over poverty. As you heard earlier in the House Report, we incentivize people living in poverty on their SSI check, Medicaid, maybe food stamps, and maybe a HUD rent certificate. And we also should look at federal legislation to establish Supported Decision Making as consistent with all current federal disability policy values of self-determination, informed choice, preferences, and make it a priority over guardianship with funds for training and technical assistance to all states in concert with the American Bar Association, the American Civil Liberties Union, the Center for Public Representation and others, and take advantage of the landmark case that blew up last year with Britney Spears in California over conservatorship, which is their term for guardianship.

And coming down the home stretch, maybe it's time to mandate in the Medicaid Home and Community Based Service waiver requirements that community inclusion must be available, supported and customized, and self-employment must be available in collaboration with the state rehab agency, and supported living for no more than three people with funding based on the individual's person-centered plan, and experientially based informed choice, and not on a formula based on a score on a test, and particularly those states that are still using adaptive behavior scales and maladaptive behaviors.

Another quick little plug here for an early teacher, Dr. John McGee, non-aversive behaviorist in the '80s in Nebraska who taught us there is no such thing as maladaptive behavior. It may be socially inappropriate, it may be unaccepted from the perspective of the person engaging is, and it's adaptive. And his experience was people who were head bangers in the institution and in some of the first group homes when they got decent medical services, found out most of them had major, middle, or inner ear infections. What were they doing this, or hitting their head on the wall? That wasn't a maladaptive behavior that was the best they could do to accommodate the pain. So that's where gentle teaching, non-aversive, and all that stuff has to come in.

So we need all of that in the toolkit, I think, as a mandate now, not just a state choice.

As we've heard, we need to expand HUD funding for affordable, accessible, integrated housing for persons with disabilities, not special buildings. Oh, this will be an apartment house with 20 units for people with disabilities. No, the standard today would be, based on ADA, about 20% of the units could be scattered in a building as set aside units for low-income people with disabilities, but not all on the same floor, not with a common room, and all that, 'cause we're just creating another kind of segregated place.

And another important one that has started in some states, and there are pieces of federal legislation pending, is we must do a better job with police and sheriffs to recognize and support people with mental health and developmental disabilities issues and expand collaboration between law enforcement and community mental health and crisis teams. I'm sure you're aware 'cause they're happening everywhere, a significant portion of people who are hurt or killed by police are people with mental health disabilities, or autism, or intellectual disabilities.

We had one in my state of Illinois several years ago, a young man eloped from a small group home for people with Autism. The police knew about it. They were called and the gentleman got stopped, and he didn't totally turn around. So the policeman yelled at him again, he didn't, so he hit him with a taser. The gentleman kept walking or running, he shot him with a taser three more times and killed him. Inexcusable, he knew that the person- But he had no training, he didn't know what to do instead. So again, I'm not faulting the officer. We must do a better job.

And in many places now, there are crisis teams when if they know it's a mental health issue, they go out either with, or in advance of the police, and in over 90% of the time, they don't even need to call the police. They're able to intervene and provide the support. So we've gotta do that.

And to help us, not only from the League of Women Voters, but the late Justice Ginsburg who gave us the wonderful "Olmstead" decision, "Fight for the things you care about, but do it in a way that will lead others to join you."

We have to build our advocacy army. We have to be cross-disability, we have to collaborate. We may have to give a little to get a little, we didn't get this far by getting it all given to us in one fell swoop, it's been incremental, and we will continue to do that as we go.

And as Mr. Collins in the corporate world taught us, "Great performance is about 1% vision and 99% alignment." Guess what? We have the alignment, now we need a plan to execute the alignment in all of our states and at the federal level.

And lastly, from Minnesota, Bill George, who is now at Harvard, but used to lead a company called Medtronic, has written a book, and it got the Harvard Business Review Award, "Authenticity has become the gold standard for leadership." I love it. I had the opportunity to meet him once, and he is the epitome of what you don't see in many corporate CEOs. The man was benevolent, and his corporation made a lot of money, and his stockholders made money, and his employees were well-treated.

One of the things they did in their business was take pig valves, heart valves, and others, and clean and package those up for use in transplants. The CEO of this company, a multi-multimillionaire, frequently went to the processing plants in California, and stood by the workers to admire them and thank them for what they are doing to save people's lives.

All of his employees were mandated to do four hours a week of community service on company time with pay, and they created a big foundation, and they still made tons of money. So you can do it all.

What he said, "People of the highest integrity, committed to building enduring organizations, have a deep sense of purpose and are true to their core values." That's what we have been talking about. Our core values are now in place in law, but we have to have the courage to build, not the companies, but the systems to meet the needs of all the stakeholders and recognize the importance of their service to society. Thank you, Mr. George.

And he goes on and talks about your character, real and genuine, trustworthy, constantly growing from experiences. Don't get stuck like I mentioned earlier. And to admit, we're not perfect, none of us are, none of us will ever be. We are gonna make mistakes, that's part of our dignity of risk, and we learn from them, and we will be sensitive to the needs of others.

So ladies and gentlemen, as we wind this down, systems change is inevitable one way or another. We have left the station. We are on track. Will we have a detour or two? Probably yes. But we see what's on the horizon, and recognize major reform is on the way in most states. It's on a fast track, and there is money, and there will be more money if we use it well.

We cannot return to the past, we must keep learning. Every one of you and all of your allies, friends, and colleagues must be prepared and engaged throughout the process. You must engage.

And then perhaps when we're done, we will be able to take the words of President George Herbert Walker Bush when he signed the ADA on July 26th, 1990, a little over 32 years ago. "Let the shameful walls of exclusion finally come tumbling down." And that gentleman sitting in the wheelchair with the Texas hat, that's Justin Dart, who I described earlier. And so now you have a little picture of Justin at the signing table on the White House lawn. That's where we still need to go. Those walls

And then perhaps when we're done, we will be able to take the words of President George Herbert Walker Bush when he signed the ADA on July 26th, 1990, a little over 32 years ago. "Let the shameful walls of exclusion finally come tumbling down."

And that gentleman sitting in the wheelchair with the Texas hat, that's Justin Dart, who I described earlier. And so now you have a little picture of Justin at the signing table on the White House lawn. That's where we still need to go. Those walls have not yet come down. They have started to be torn down, but we have more work to do, and when we're done, whenever that may be, in the next lifetime, perhaps we will have full equal justice under the law.

Thank you very much for your attention and participation.

©2023 The Minnesota Governor's Council on Developmental Disabilities
 370 Centennial Office Building  658 Cedar Street   St. Paul, Minnesota 55155 
Phone: 651.296.4018   Toll-free number: 877.348.0505   MN Relay Service: 800.627.3529 OR 711  Email:   View Privacy Policy   An Equal Opportunity Employer 

The GCDD is funded under the provisions of P.L. 106-402. The federal law also provides funding to the Minnesota Disability Law Center, the state Protection and Advocacy System, and to the Institute on Community Integration, the state University Center for Excellence. The Minnesota network of programs works to increase the IPSII of people with developmental disabilities and families into community life.

This project was supported, in part by grant number 2001MNSCDD-03, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

This website is supported by the Administration for Community Living (ACL),  U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $1,120,136.00 with 83 percent funded by ACL/HHS and $222,000.00 and 17 percent funded by non-federal-government source(s). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.