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

October 2022, and let's sort of celebrate some of the major pieces, and then we're gonna do some deep diving.

So it's already the eighth anniversary of the Workforce Innovation and Opportunity Act, where customized employment was added, and a whole bunch of other things around priorities for adolescents and young adults.

It's the 23rd anniversary of the Olmstead Supreme Court decision, and we'll get into that.

It's the 30th anniversary of presumptive employability amendments to Voc Rehab.

The 32nd, we just celebrated this past July, of the Americans with Disabilities Act.

The 36th of Supported Employment in the Rehab Act Amendments.

The 41st of Medicaid Home and Community-based aivers, 47th, coming up to 50 pretty soon, of the Individuals with Disabilities Education Act, originally the Education for all Handicapped Children's Act.

52nd of the Developmental Disabilities Assistance and Bill of Rights Act, 57th of Medicare and Medicaid, and the 87th of Social Security.

And so the question is, where are we? If we were in a live audience, but you can do this when you watch this, how many triangles are in this picture? Take 30 seconds, study it carefully.

Typically, I get answers of seven, 10, eight, and occasionally, somebody gets it correct. The answer is zero because our perception, and I've given you a cue, says triangles, and there are lots of incomplete triangles, next. But the problem is there are none. But our perception is reality. What we believe to be true is the basis of our personal reality and the key to how we experience the world around us.

This is, in my opinion, the major barrier still facing people with all types of disabilities in the United States and many other countries today, is that cultural belief, that perception, that label, that stigma, that stereotype that goes with something you heard or learned growing up, sticks in your brain, and it becomes almost a permanent sense of reality.

And what we have to do, just like with the triangles, is get rid of it. It's not valid, it's not legitimate, and we need to move on.

And the other thing is, I've mentioned in a couple of the examples, is to remember, disability policy is not partisan. When the late Senator Bob Dole first took office in the Senate in 1969, he was the first person with a disability to be in the US Senate. Here is a direct quote, and I want to read it because it's beautiful, and it applies today.

"Mr. President, my remarks today concern an exceptional group, which I joined on April 14th, 24 years ago," so that would've been 1945, during World War II. "It is a minority group, whose existence affects every person in our society and the very fiber of our Nation. It is a group who no one joins by personal choice, a group whose requirements for membership are not based on age, sex, wealth, education, skin color, religious belief, political party, power, or prestige."

Cherish those words from Senator Dole. This is not a partisan policy agenda. This is a human and civil rights agenda, and disability occurs in all parts of our society, rich or poor, white, black, brown, yellow, red, LGBTQ, and go down the list of all the intersectionalities, and wealth doesn't get you out of being exempt from having a disability in your family, as the Kennedy's knew, and as other families, Domenici and Wellstone, they were not poor, and the Weickers, and many, many others. It's a characteristic, it's an important one, but it doesn't define you.

And so I always like to quote Senator Dole because he was a leader in the bipartisan world who experienced disability and played a major role, including in the ADA.

So now, let's get to the core values, outcomes, and guiding principles within all federal disability legislation today. And what we have for the first time in the last few years is consistent values across every federal agency. I can tell you when I first started doing this work, even on Capitol Hill in the '80s and '90s, I didn't know that we would get this far, but we now have the same words, almost identical, and if not, close enough, from the United States Department of Justice, the Department of Labor Office of Disability Employment Policy, the Department of Education, Special Education, Rehabilitative Services, Social Security Administration, the Department of Health and Human Services, the Center for Medicare & Medicaid Services, the Administration on Disability, and the Substance Abuse Mental Health Services Administration. That is remarkable, and, as you will see, we need to be very grateful to the amendments to the Developmental Disabilities Assistance and Bill of Rights Act for leading this major shift that started, as I showed you earlier, with independence, productivity, and integration as outcomes in 1984.

And speaking of developmental disabilities and the Councils, the purpose of the Councils are in statute. "To engage in advocacy, capacity building, and systemic change activities that are consistent with the purpose," and let's talk about who this population is. Remember when I told you earlier that developmental disabilities was a term coined in a bar? It's not a medical term, it's not a psychology term. There were many studies done. And finally, the functional definition is what was agreed to, and it is before age 22. And if we look at this, we aren't talking about people with mild disabilities. Three or more major areas of lifelong impact: self-care, communication, learning, mobility, self-choice, independent living, and economic self-sufficiency.

There are many people today who you know and I know who have mild intellectual disability, mild developmental disability, who don't meet this criteria. And the reason I want to zero in on this is the target of the DD Act is people with some of the most significant challenges in the disability world. And if these goals apply to them, they apply to everybody. And we need to remember that as we go forward. And you'll see how the language now is embodied in all the other federal laws.

So that's who we're talking about, all right? So there's the independence, productivity, and integration in the community, and achieve their best through living and working in the community. Thank you, Senator Weicker, 1984, 38 years ago. Yeah, so we need to move forward and see where do we go from there?

Okay, so in 1990, we added a couple of things, self-determination and inclusion, and we added cultural competency, a recognition that different cultures do look at some things differently, and we need to be sensitive to the cultural environment in which somebody with a developmental disability grew up or is being raised, and still make the translation. We're not gonna compromise, but we have to understand some of that culture as well, and that's what we're talking about.

And again, needed community services, individualized supports, and here we go, beautiful language. And even within DD, those with the most severe, so maybe five out of seven, or six out of seven, are capable of self-determination, independence, productivity, integration, and inclusion in all facets of life, but require community services and individualized supports. Key word here, individualized. Not a program, not a group. Individualized, one at a time, okay?

And then, here's the other kicker that we added that you will see is now in other laws. Families and individuals have competencies, capabilities, and personal goals, should be recognized, supported and encouraged. And we have to be sure in the individual plan, we recognize the unique strengths, not the deficits, the strengths, the resources, the priorities, the concerns, the abilities and capabilities of such individuals.

Ladies and gentlemen, that is superb language. And I would say to you, for any of you who are not a person with a disability, think about when you go to apply for a job. What do you do when you sit down and they ask you to talk about yourself? Do you tell them all the things you don't know how to do? I don't. You brag about what your strengths are, what your gifts are, what your competencies are. Every human being has them if we're willing to take the time to discover them and exploit them in a good way, as opposed to saying, "Well, the person uses a wheelchair," or, "They have Cerebral Palsy," or, "They have Down Syndrome." So what?

I know two people with Cerebral Palsy, they're totally different people. I know lots of people with every label you want to come up with. They're not the same, they're not carbon copies, they're all different. No different than any of us. Our height doesn't define us, our weight doesn't define us, our eye color doesn't, our hair color, it's a characteristic. So is a disability, I'm not demeaning it, but it doesn't define who you are and what you have to offer. So we need to get out of that deficit mentality and the things that somebody might not be able to do, versus what are their gifts, what are their interests, what would they like to do, let's give it a shot.

And then inclusion, we had to define it in the law. Look at this, all right? Acceptance and encouragement of the presence and participation of individuals with DD by individuals without in all the activities in the community. And have friendships and relationships, really? With some regular people, some typical people? Oh my goodness, yeah. My daughter is a skilled bowler. She has intellectual disability, but she bowls well, she has an average of 142. She bowls in a league. They could care less about her disability. Her strength is she's a great team member, okay? And she loves it. And so those are the things we're talking about. And in homes close to community resources, regular contact, people with and without disability in the community. So inclusion is defined, and it's further inclined, look at that. Oh, and employment is mentioned, oh my goodness. Same community activities, types of employment as individuals without, full advantage of integration in the same community resources, living, working, and enjoying life. This is in the DD Act, 1990, 32 years ago.

So I like Mr. Einstein. Look at this one. And he was a pretty smart fella. "Everybody's a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing it is stupid." I love that quote, and I'm gonna give you an example of a gentleman I met several years ago in a state that will remain nameless, who was in a sub-minimum wage work situation, doing a contract that I didn't know was still around, assembling ballpoint pens, where you have an assembly line, and there's this wood jig with lots of holes in it, and the first person puts the bottom part of a pen in it, the next person puts a spring, the next person puts the ink cartridge, and the last person puts the top on. A gentleman who had the last workstation, can't make this stuff up, was a gentleman who had spastic diplegia Cerebral Palsy.

He was Einstein's fish. There was no technology. He would sit there and work like crazy to screw the top on this pen. And I watched, and I watched, and I said to the supervisor after, "Why is he doing that job?" Ready for the answer? "He likes it." I said, "He likes it? What else have you tried?" "Well, no, that was the first job we gave him, and so he's been doing it for 10 years." Okay, that's real. Fortunately, thanks to customized employment, he's working in a law office, and with technology, he's filing records and making better than minimum wage. He was destined to be the ballpoint pen man for the rest of his life because nobody saw any possibility for this man. Nobody was willing to take away the physical disability and say, "What else is going on here? What could he do? What might he be interested in? What choice does he have?" He was not given any choice. "Here's the bench, stay with it," yeah.

So let's look again as our systems have moved. We used to be system-centered, deficit-based, as I said, segregation, isolation, professional/provider control. "I have a Master's degree, I know what's good for you." "I have a PhD, I know what's good for everybody." Sorry, no offense to my clinical friends. Rejecting community, loneliness, you don't belong here, separate. Paper compliance. "Oh, let's come in and do an audit. Oh yeah, they got the forms filled out. Check, you're in good shape. We'll come back next year." No accountability for outcomes.

The word wasn't even mentioned until the last 10 or 20 years. The person and the family were devalued, they were less than. And so we focused on the labels. Again, we emphasized the deficit. What's all the things that are broken? How many kids have you met where, starting an early intervention, "Oh, you need to get them PT, OT, and speech five times a week, mom." What? Yeah, go to the early childhood center, Monday, Tuesday, Wednesday, Thursday, from 10 to 11:30, and you'll get 20 minutes of this, 20 minutes of that. I'm here to tell you, read the research, not there, except a little bit now for some kids on the autism spectrum, but it was nice, cha-ching, cha-ching, cha-ching for the therapist. And it was also strenuous. Can you think about that as a mom? You gotta get your kid there every day, and if you don't, you're a bad mom, right? No, we don't need that anymore. Standardized testing and assessments, most of which were never done on this population. So you're gonna flunk all the time.

My stepdaughter, Mindy, experiences Rett syndrome. She has a 25-second auditory processing delay and has lots of difficulty with hand coordination. She has flunked every IQ test she's ever taken and was labeled profoundly, pardon me, mentally retarded. However, thanks to assistive technology and customized employment, things have changed. But she still received the worst label possible. Professional judgments and written reports became compliance requirements. I learned this during my time in grad school, where my beautifully crafted reports ended up being filed away without any presentation or discussion. This emphasizes the importance of seeing people in the context of the system and focusing on their capacities and gifts rather than their differences.

Moving towards a person-centered approach, we should prioritize people first and search for their capacities and gifts. It's crucial to spend time getting to know the person beyond stereotypes, labels, and disabilities. We should depend on the perspectives of individuals, families, and direct support workers to build accurate descriptions and gather insights from those who know them well. By seeing individuals within the context of their community and discovering common experiences, we can bring people together.

Now, let's delve deeper into some of the laws we discussed earlier. IDEA, the US code, ensures that all children with disabilities receive a free and appropriate public education that emphasizes special education and related services to meet their unique needs. The focus is on preparing them for further education, employment, and independent living. The 2004 amendments to IDEA highlighted the importance of having high expectations for children with disabilities and ensuring their access to general education as much as possible. Congress emphasizes the goal of enabling children with disabilities to lead productive and independent adult lives.

Furthermore, I came across a quote by Stephen Covey that resonates with us: "Reducing children to a test score is the worst form of identity theft we can commit in school." It reminds us of the harm in labeling children solely based on their test scores or other characteristics. Embracing differences and recognizing that strength lies in these differences is crucial. Each student with a disability is unique, and it is essential to appreciate and understand their individuality.

And then as we get to the transition planning, we need to recognize, again, it's not a place, it's not a program. Oh yeah, the transition kids are gonna go over there for their next couple of years. No, it's not a program. It's individualized, and it's a roadmap to life after high school.

So what should that look like? Okay, here's what the law says in 2004. Coordinated activities, results-oriented. Look at this, in the law now, outcomes, not just compliance, results. Improving academic and functional achievement of the child, movement from school to post-school activities, including post-secondary education? They can go to college? Voc ed, integrated employment, including supported employment, independent living, community participation, and then here, watch this, picked up from the DD Act, all right? Strengths, preferences, and interests. So it has now made it from the DD Act to the foundation of IDEA. Outcomes and strengths, preferences and interests, all right? Community experience, employment, post-school adult living objectives, daily living, okay? And OSEP, rather, was beginning to move toward monitoring for outcomes rather than paper compliance. It's a slow process.

And here's a key point. I met many, many people where parents have been told, "You don't need to bring your kid to the IEP. We know what he needs, or she needs, or they need, or whatever. Use this diagram." It's the student's IEP. It's his, or her, or their life that is being planned. And I give you an example from a mom who went through Partners in Illinois who heard this and hadn't taken her son because the school said, "Don't bother."

So when he was 10, they took him to his IEP, young man's name is Seth. And they had spent some time at home prepping for this a little bit. So they walk in, the mom, the dad, and the son, and there's the seven or eight teachers, therapists, and all of that. I really wish I could have been there watching with a video camera. And the staff were stunned that Seth was at the meeting, but they didn't say anything, but you could see their faces according to mom. So they all sat down and they did introductions. And when it was Seth's turn, he has some kind of voice output device. Direct quote, ladies and gentlemen. "Hi, I'm Seth. I'm here because I'm the expert on Seth." Total silence in that room. It was a wake-up call to the staff. He's at the center of this stuff. Doesn't mean they have to agree with all of it, but it's his life that's being planned. Not the district's, not mom's, not dad's, his.

That moved his situation where he is now fully included in high school. And in addition, the word got out in that school district, every parent brings their kid to the IEP now. One mom who went through Partners training and got the message and realized, "Yeah, he ought to be there." So okay, the kid needs to be invited and be accepted at his meeting, or her meeting.

Then we have this Supreme Court case, not that long ago, five years. Eight to nothing, unanimous decision. And this was a case out of Colorado. Parents pulled their kid with autism who was in fifth grade, put him in private school, 'cause they weren't pleased with what was going on in the public school. They wanted the public schools to pay for it. They lost the case in Federal District Court. They then took it to the Supreme Court. And I would be less than candid if I didn't tell you that many of the strong advocates were really worried by 2017, what was the Supreme Court gonna do with a case like this?

So what we found out is that Justice Roberts wrote the majority opinion. That doesn't happen very often. We are still trying to determine what is his link to special ed, or autism, or something. We're not complaining, we're happy. But these are direct quotes, and this is now the law of the land. A Supreme Court decision is the law of the land.

"When all is said and done, a student offered an education program providing merely more than de minimis." So that would mean, like some of you have never seen, I'm sure, in an IEP, "We're gonna take Susie's reading level from 3.2 to 3.4 next year on the wide range achievement test, and we'll be able to say, we had a measurable goal." No, he's saying that doesn't cut it, all right? It demands more. "A program reasonably calculated to enable a child to make progress in light of their circumstances," and I love the last line. "The IEP is more than a form." This is the Court saying it's not a compliance document. It is a roadmap, it is a plan, all right?

And then the feds put out this manual in 2017, "Transition Guide." Look at that. Appropriate measurable post-secondary goals, age-appropriate transition relating to training, education, employment where appropriate, independent living, all right? Assist the student to reach these goals. That's the law, that's the manual.

And then we have research to back it up. Dr. Luecking recently retired from the University of Maryland, used to be at an agency called Transcend. 20 years of work paid for by our federal tax dollars on transition. Work experience during school is the best predictor of post-school career success. How many students do you know, 14 to 21 with disabilities, who haven't even been given an opportunity for volunteering, let alone a paid job during school time, or during the summer, an apprenticeship, whatever it might be. "Oh no, they can't. We'll get to that later," or, "That's Voc Rehab's job," or, "That's the DD system, or the mental health system, or the phys dis system," or whatever it is. No, it's the school district's job, and the earlier, the better. So these are all the things that Dr. Luecking documented case, after case, after case in all of his research, all right?

And then, better yet, from a new colleague at Vanderbilt, the best predictor of post-school outcomes are the following. Parental expectations, teachers' expectations.

You remember Congress wrote, we've gotta raise the expectations. They put that in the 2004 amendments. They changed the path of what's made available and what is taught. And Dr. Carter continues, "Changing introductions from deficits and what cannot do, to strengths, preferences, interests, gifts, and contributions." Relationships matter. Location matters. Those are code words for inclusion.

Dr. Carter is at Vanderbilt. I don't believe you could find any student that he would tell you couldn't be included with appropriately trained staff and supports. And one of the things his recent research is showing, very exciting, is that peer classmate tutors, I spoke about peer-to-peer earlier, may do a better job than paid paraprofessionals in the classroom. It's new research, he's working on it, continues to do it. This is a gentleman worth following. His real areas are inclusion and transition. But it's in his DNA. There is nobody he has seen yet that he hasn't figured out an IEP that will work. So it's there.

So ladies and gentlemen, where are we? 1975, 1984, 1990, 2004. This is the latest data from the federal government on placements, so-called educational environments, all right? By IEP diagnosis, 6.3 million students in 2018, ages five to 21, 9.5% of all the kids in school. In some districts, it's higher than that, some lower. All right, Severe Learning Disabilities, SLDs, Speech-Language, Orthopedic Impairment, Autism and Intellectual Disability, Emotional Disturbance, and other is sort of the catchall. 80% means 80% or more of the time, they are in a typical classroom with their age peers.

You will notice that the group that is not there most of the time are students with intellectual disabilities. 40 to 79% is the next category, the way the feds group it. And you can see, that cuts across everybody. And then we get to the less than 40% in the typical classroom. And lo and behold, look at those numbers. Intellectual disability, half the kids, basically have less than 40%, and that could be 20, or 10, okay, with their age peers. Same for Multiple Disability, and about a third of the kids with Autism. And then other means self-contained class, or a special school, and look at that. 23.3% of kids with multiple disabilities, and 16.1 of kids with severe emotional disturbance. That's 2018. Special ed has been around since '75, amended several times. The most recent, '94. So we're talking 24 years ago. Who's got the problem, the kid? I don't think so. We have got to do a better job of implementing the law, and giving these kids their rights.