Bending the Arc of Disability History Toward Rights, Freedom, Social Justice, and Belonging
Presented by Allan Bergman
Section 2. A Brief History of Disability (1980 to 2022)
Allan Bergman traces the intense pace of federal laws during this time period and outlines all changes that occurred. Mr. Bergman highlights the addition of Centers for Independent Living in 1978 and passage of the first waiver legislation in 1981. Early Intervention services were established in the federal Education Act in 1986. Supported employment was initiated through the Rehabilitation Act Amendments of 1986, multiple improvements were made in the 1992 Amendments, and customized employment was added in 2014. The Fair Housing Act included disabilities in 1988; the Technology Related Assistance Act passed in 1988; and the Americans with Disabilities Act passed in 1990. The 1999 US Supreme Court decision in Olmstead v. LC & EW, established the right to live and receive services in the most integrated setting. The Help America Vote Act was passed in 2002. A final lesson, emphasized and demonstrated throughout Section 2, is that disability policy is not partisan.
In 1980, we got the Civil Rights of Institutionalized Persons Act, better known as CRIPA. What an interesting acronym. Crippled, CRIPA no, sorry, we got to joke once in a while, giving the US Department of Justice standing in addition to the Protection and Advocacy Systems to go into state institutions and file lawsuits on behalf of individuals who are living in these places. So that happened 42 years ago.
1980, the National Association of Protection and Advocacy Systems was created, today is known as the National Disability Rights Network. And they have been around obviously for a long, long time. And their long running Executive Director, Curt Decker, recently retired after, I wanna say 35 plus years. I don't know if he was right in the beginning, but a long run, did a monumental job. What we said about Curt is he never found an item that didn't need a Protection and Advocacy System, and they managed to add all kinds of things, include of representative payee benefits checking for people, because providers who were getting people's SSI or SSDI checks weren't giving them their appropriate amount of money. Oh my goodness. Never seems to stop.
Okay, 1981, if you'll recall, Medicaid 1965 had nursing homes. 1971, we created this Intermediate Care Facilities (ICFs) for people who were mentally retarded to get federal money going into the state institutions. And some private ones also got created. But in 1981, things were beginning to change at the community level, in part because people were beginning to see a different world.
A lot of this got started in Nebraska, the work of Wolf Wolfensberger, principal of normalization, and a whole bunch of other people, Bob Persky. And we could go down the list of a lot of people who began to say community can work.
However, the Medicaid Home and Community Based Services, better known as HCBS or Section 1915c of the Social Security Act, as it's legally referenced, was led by not the developmental disabilities community, but by AARP and the Developmental Disabilities Community joined in and we have probably exploited it better than the senior community in most states in this country, although there's a lot of seniors that are benefiting as well from a non-nursing home services Home and Community Based Services.
This was a monumental effort to say that if Medicaid is going to pay for long-term services and supports, which in those days was called long-term care. Okay? But today, long-term services and supports, why does it just have to be in big places? Why can't it be in the community? Why can't people live at home in those days? Why can't they live in a small group home? Why can't they go to a day program in the community and do things and whatever? So it was a major shift from the congregate isolated institution into community.
But I think we learned over time that it didn't change a lot. And Steve Eidleman, who's now partially retired at the University of Delaware National Leadership Institute, a number of years ago, I don't know if it was before or after he was The Arc of the United States Exec said, "Looking back, we really need to respect the fact that in de-institutionalization and the creating of group homes, all we did was shrink the size and change the zip code, still places of regimentation, of control, et cetera. Size makes a difference, choice, all of that that will evolve into our future federal policy.
But Steve had it, and I think many of us began to realize that it just wasn't gonna get where we needed to be.
And it was a step, but it was really just an incremental step.
So we got that running and states began to do their waivers. And again, no two waivers are the same. Some states have 6, 8, 10 for different populations, perfectly legal. You move from one state to the next, don't assume that the services are gonna be the same or the arrangement's gonna be the same. They're different because the states are in control within a broad set of federal regulations and application guidelines. So they're interesting and different.
OBRA was the Omnibus Budget Reconciliation Act, that's where that got folded in.
1982, wonderful story of a mom named Julie Beckett, recently passed away, founded with some other folks, Family Voices and Julie's daughter, Katie, was born garden variety, neuro typical, and then had a major case of viral encephalitis and ended up in the hospital, suburban Iowa.
And family had health insurance like most middle income people. But at some point they hit the stop gap. I don't remember whether it was $500,000 or a million, but whatever it was.
And the hospital wrote 'em and said, "Okay, she's still here and your insurance has run out. So sign up here, we'll give you Medicaid."
Medicaid did allow parents who had children under the age of 18 who were in a hospital, nursing home or institution for 90 days or more to what we call waive the deeming of parental income. So you could be a millionaire technically, but if your insurance ran out, Medicaid could start paying the bill.
So Medicaid started to pay the bill for Katie to stay in the hospital, but as things improved, as she improved, as the ventilator system improved, there was a discharge meeting at the hospital and the staff said, "She can go home now, but she will need visiting nurses and blah, blah, blah, blah, blah."
And Julie, who claims she used to be shy and retiring, I doubt it, said, "Well, who's gonna pay for this?"
"Oh, your insurance will, Mrs. Beckett."
"No, you guys took all of our insurance. We don't have anymore for Katie. Her lifetime limit is gone."
Oh, then Julie says, "Well, how about this Medicaid stuff that's paying here?"
"Oh no, that won't work. As soon as she leaves the hospital, then you're no longer in that category. Then we have to look at your income and deem you and your husband's income and your assets and you'll have to spend down and blah, blah, blah, blah, blah."
So Julie began her legislative advocacy, first with her US Representative and explained this to him and he said, "That can't be. Why would we have an anti-family policy?"
Said, "I don't know, but that's what I've got."
So as the Katie Beckett story got moved around in Washington, it then got to the Vice President's office, George Herbert Walker Bush, and he was astounded. And he did his research and he then brought it to the Oval Office to President Ronald Reagan. Put a picture on the table, told the story.
And then President Reagan on that infamous Friday afternoon, made his call to the Secretary of Health Education and Welfare and said, "Are you familiar with this?"
"No, I'm not."
He told him a little bit about the story and he gave him an order and this was 4:30 on a Friday afternoon, "Fix it so this little girl goes home to her family where she belongs," slams the phone down.
The bureaucrats worked all weekend to try to figure this one out 'cause you don't wanna tell the President you're not gonna do it. You won't last very long (chuckles).
And Monday morning came over and said, "In the rules it says, any of these rules can be exempted. But Mr. President, I don't think I should be doing this. I think you should be doing it."
Ronald Reagan signed the amendment that allowed Katie to go home with her family where she belonged. And that then led to an amendment to the Medicaid law that says, "For families who have children under the age of 18 who would otherwise be eligible for placement in hospital, nursing home, or ICF, we will waive the deeming of parental income," that is known as the Katie Beckett Amendment.
States then can use it. Not all states do, many do. They can cap how many people they will put under it. But that opened up a whole new avenue.
And here's the really important thing, advocacy of one mom, one story, the power of it getting to the Oval Office. And again, this is a country that says we value families.
And as it turns out it was cheaper, but we were gonna spend more money to keep her in a Neonatal Intensive Care Unit (NICU) than to let her grow up. And Katie unfortunately passed away several years ago, but she went to school, she went to college, had some part of a career and she would've probably died in the NICU, I would think or some nursing home at some point.
So thank you, Julie.
TEFRA again is Tax Equity Fiscal Responsibility Act, Section 134. That's where it got dropped in.
Okay, we are at 1984, and this is a significant piece of change legislation in my opinion. The Developmental Disabilities Act was amended, and for the first time in disability policy at the federal level, three terms entered: independence, productivity, and integration. Thank you Senator Lowell Weicker, Connecticut.
And a parent again, you'll hear that we've had parent allies and sibling allies in Congress on both sides of the aisle. And Senator Weicker understood well the issues facing children and adults with intellectual or developmental disabilities. And the people who were the advocates at that time, I wasn't there yet, I got to DC in 86, said to him, "Would you please, Senator, allow us to put the definitions of these three words in the law," implying they weren't sure how they might get translated in regulations put out by the Executive branch. They didn't know, and they figured if he was willing and he understood it, let's put it right in the statute so people can't argue, what did you mean?
And it's so important that they did that because the word independence gets us in so much difficulty because of the figurative understanding of the word, independent, footloose, fancy-free. I would challenge anybody in the audience who is independent in that sense. None of us are, nobody is independent. We are all interdependent. And you will see that got added later. Independence means in this law, exerting choice and control critical to as we flow through the next almost 40 years to today, and you'll see how this goes, but independence was a pivotal turning point in federal policy.
Productivity, having a meaningful role in the community, volunteering or paid work, not a day program, not sub-minimum wage, productivity, valued role and integration.
Well, coming off the Civil Rights Act, integration, having access to and participating in the same resources in the community as anybody without a developmental disability. Folks, that's monumental change in paradigm values, expectations that you will see, thank you to the DD Act has now begun to make its way across all other federal laws, as have other things that have happened in the DD Act. So great acknowledgement to what will be 40 years in a couple of years to that major shift in our thinking.
And for the first time talking about valued outcomes, not compliance with paper documents, but outcomes, measurable, quantifiable in everyday terms.
1984, again, another amendment to the Rehabilitation Act added the Client Assistance Program. Why? Because some people were going to Voc Rehab, weren't feeling they were being treated well, and they had no recourse. So the Client Assistance Program is an advocacy plan that allows you to say, "I want to appeal, I need help." Some states, it's still with the Voc Rehab Agency, in most states it has been transferred to the state disability rights or Protection and Advocacy System. So you have some recourse if you think you have not been fairly treated by the Vocational Rehabilitation System. Not bad.
As we were beginning to see group homes show up in communities, there were lots of oppositions. The old NIMBY, "not in my backyard" kind of thing. I don't want those and you can fill in the word, whatever not nice words they were using for people with disabilities in my street, on my neighborhood, blah, blah, blah, blah, blah.
So this was a Supreme Court case, the city of Cleburne in Texas versus the Cleburne Living Center. There's a citation for you on the slide. And basically the Court ruled that was discriminatory and they could not do that and that group home could open up.
Then in 1986, we had some very exciting times because a woman named Madeleine Will, hope some of you know that name, a mom, wife of the commentator, George Will, former wife, former husband, became the appointee for the Department of Education, Office of Special Education and Rehabilitative Services (OSERS) Assistant Secretary.
Madeleine had watched and was concerned that a number of states, I think the earliest had been Michigan, were slowly putting on state level that they would have early intervention or birth to three services for children with disabilities. Again, sort of giving them a boost, a headstart before kindergarten, all of that.
Madeleine, in the Reagan administration, because as you'll hear all our work is bipartisan, was able to help lead the charge in Congress to get Part H, which is now part C of the Individuals with Disabilities Education Act, which is the new name we'll get to shortly for what was the Education of All Handicapped Children's Act back in 1975.
So Madeleine brought her force of will, no pun intended, to that Office with an agenda. We don't often see that, in my opinion, with people appointed to federal positions, but she did. And so fortunately, Early Intervention became the law of the land.
In the same year, heaven forbid, she should be satisfied with just one thing, she also had learned about something called supported employment from the people at Virginia Commonwealth University, the people at the University of Oregon, Paul Wehman, David Mank, Tom Bellamy, all leaders in our field.
And she got the Rehabilitation Act amendment to include supported employment for people who were going to need a little more assistance and support beyond the usual just job training development, case closed, good luck. And Supported Employment got added in 1986.
I had just come to Washington at that time and I learned an important lesson. I was very excited. I was all in favor of this. And a gentleman named Bob Gettings, who then was the Executive Director of the National Association of State, then it was still MR, but I think moving toward DD directors and a great leader in our field, and I were having coffee one day and he said, "I can tell you're really excited about this supported employment stuff."
And I said, "Yeah, I am Bob, I think over the next 10 to 20 years that will take care of the sheltered workshop problem."
And he gave me a good education in culture chain. He said, "Allan, here's what I'm gonna tell you. It will make a difference. It may not be significant because most providers will add it to their menu as part of the continuum of care. We'll talk more about that later." But that was a telltale lesson. And boy was he correct, unfortunately. But thank you for that insight, Bob, because it helped me as I continued my work in legislative advocacy and training.
The other thing that we got done in the '86 Amendment, though we got qualified professionals raising the standard in the VR system and rehab engineering as a service was added for a lot of people with disabilities. That's very significant.
Also, 1986, the Protection and Advocacy System added a new population, people with mental illness, better known as PAMI. So now we had developmental disabilities, individuals in rehabilitation, and people with mental illness under the Protection and Advocacy umbrella, big milestone, 1986, big names here. Lex Frieden, Bob Bergdorf, Marca Bristo, because the National Council on the Handicapped, today known as the National Council on Disability, issued a blistering report called "Toward Independence," documenting massive discrimination against people with disabilities of all types, of all ages in the United States of America. That led to eventually the Americans with Disabilities Act, but "Toward Independence" was the title of that seminal report in 1986 that was put together at the request of the members of that Council because they knew it, but they needed to have it documented. And actually, Bob Bergdorf, who did the major work on it, would tell you he had started writing the paper three or four years earlier while he was still in law school. So it has a lot of resonance to it.
1987, in the Code of Federal Regulations for Special Education, in addition to occupational, speech, language therapy, psychology, school health services were added. Social work schools, services in school, and parent counseling and training were all added as things that could be part of a student's Individualized Education Program. Not too bad, not too bad.
1987, big event. Willowbrook closed after that horrid exposé on September 17, 1987 and is still the class under Court monitoring today in 2022 to make sure that all those people who are still alive, that their rights are protected in the community.
And then a little sleeper got snuck in in 1987 to Medicaid called Pre-admission Screening and Annual Resident Review, better known as PASARR. A gentleman named Bob Williams, now retired from the federal government, and I were concerned about people being sent into institutions and not getting out. So with the help of Congressman Henry Waxman and his staff, this just got slipped in. There's no legislative history, there's no hearings to it, unfortunately, it has no teeth to it. So it's a nice thing. And you're supposed to give people choice once a year. And I'm sorry to tell you that in most places, it has been sabotaged. So we would sit down and say somebody to Allan, "Well, Allan, you've been here for 10 years and all your friends are here, but some do-gooders think you might wanna be out in the community. What would you like to do?" That's not Pre-admission Screening and Annual Resident Review. That's sabotage. And there were no penalties really associated with it. Some states are doing it better now with other tools.
1988, the protests continue.
Gallaudet University, the only college in the country for people who are deaf in the Washington DC area, had been given a new president. And again, somebody who was not deaf. The students protested vehemently on the campus, at the Capitol. And lo and behold, for the first time, a President of Gallaudet University was appointed, who was a person who was a member of the deaf community. Remember we talked earlier about peer to peer, somebody who was President, who understood the life circumstances of his students.
The Association for Professionals Supporting Employment. First came two years after the law was amended, and that organization is still pretty strong now. Then it was the Association of Professionals for Supported Employment. Now they've changed, the acronym is the same, changed their name.
1988, big year. Disability was added as a protected class in the Fair Housing Act with an amendment. Unfortunately, discrimination still occurs by landlords, by mortgage brokers and others. And the law is very clear. For those who don't know it, you can't apply any additional criteria than you would to anybody else. But we know that implicit bias around racism is still a problem in home buying, in home renting, in mortgaging, etc.
It is still an issue for people with disabilities based on the last report on the number of complaints. But the law is clear. Discrimination is discrimination. SSI is countable as income. SSDI is countable as income if you need it to justify your credit to pay rent or a mortgage payment. Lots of people still don't know that. But that's only 34 years ago.
1988, the Technology Related Assistance Act. We'll come back and talk more about that later, but this was a major attempt to put assistive technology and devices in the toolbox in all states to make people aware these tools can make a phenomenal difference. Going back to the DD Act in enhancing people's independence, productivity, and integration into society.
Mentioned earlier that we added Early Periodic Screening Diagnosis and Treatment (EPSDT) to Medicaid way back, but there were lawsuits around it because states weren't fulfilling it and they would make examples such as, well, this is experimental treatment for this kid's bone marrow transplant for their cancer. So we're not gonna pay for it. Oh, so we'll let the kid die instead. Thank you very much for Early Periodic Screening, Diagnosis and Treatment. The T is for treatment.
And so there were several of these lawsuits. And then the law was amended to make it very clear what the E, the P, the S, the D, and particularly the T stand for. And that as a protected right, and whether it's available in the state or not, if you have to go someplace else to get it, because that's the research center, your state will pay for the transportation, you will pay for the procedure. And if need be for a child, you will pay for a parent or somebody to go with them. Case closed, done. So that's now the rule of law.
But it was a shame that states tried to figure out how they wouldn't have to fulfill it. So Congress stepped in and then the final result of that "Toward Independence" from 1986, the Americans with Disabilities Act, landmark civil rights legislation for people with disabilities, was enacted.
And the hero on this, and there are many people, was the late Justin Dart, who we called the Gandhi of the Disability Civil Rights Movement. And basically for those who aren't up on all the details, there were meetings of all the disability advocates once a week and I think it was the Methodist Church in DC. And I was there at the time to bring us all together. And Justin had one line, "We are all brothers and sisters. We will sell out none of our brothers and sisters with a particular type of disability," because he and some of the rest of us colleagues on Capitol Hill, and we'd get this information.
Well, so-and-so in this office was sitting with somebody from the X, Y, Z organization saying, "Well, yeah, we'll take care of your population. But those really," pardon me, "retarded people, they shouldn't have those civil rights, so we're gonna exclude them." Well, okay, if I can go back to my board and say we've taken care of my population, I don't have to worry about them, those people got shortchanged.
Same happened for people with serious mental illness. There were attempts to play divide and conquer in the disability world. And unfortunately some of that still continues, but much less than we had going into that event. And Justin was adamant, no exceptions, no exclusions. Because once we do that, we have begun to open the door for when things get bad or well now we'll exclude this population, then we'll exclude that population. And pretty soon we'll cover 1%. But 99% of the people with disabilities that we're concerned about who are our brothers and sisters, the hell with them, they can still not get their civil rights.
And I am pleased to tell you, at the end of the day, every person with a disability is included. And we'll come back and talk a little more about that. But that was a pivotal moment of bringing the cross disability community together and ending what has been perceived and in some places still is a hierarchy of disability status. That if you're gonna have a disability, well you're better off to have a sensory disability. Next best to have a physical disability, next an intellectual disability and at the bottom of the heap, a mental health disability. There are still people who believe that that is part of the culture. This law at least said on paper, sorry, it's a level playing field. Your diagnosis is irrelevant if you have one.
Okay, 1990. On the heels of that, because I think language was becoming really important, the Education for All Handicapped Children's Act, that was the law in 1975.
And I wanna spend a few minutes on this, got changed. And this isn't just word games to the Individuals with Disabilities Education Act.
Okay, so let's go back. Education for All Handicapped Children's Act, a big umbrella, even though there was supposed to be an Individualized Educational Program. Now the law gets front and center, Individual with Disabilities Education Act. It is about you, it's about you, it's about you, it's about you. And each one of you is an individual and each one of you is different. It's not a cookie cutter. There is no recipe book except yours. That's what the law intended to start to put forward.
And a new category was added for students with Traumatic Brain Injury and transition services were to begin at age 16, transition from school into post adult life and the beginning of outcome orientation in special education, riding on independence, productivity, and integration from the DD Act, as we talked about earlier.
So IDEA starts moving us along. And then here's another big one. This one again, we'll come back and we'll do a deep dive on some of these in a little bit.
In 1990, there had been attempts to pass legislation to cap the amount of federal funding going into institutions. The ICF/MR program, be it public or private, that was not successful. That was our hero, Senator Chafee from Rhode Island, could not get it across the finish line.
But then Senator Benson from Texas agreed to work with Senator Chafee. And this lead came from the National Association, again of State Directors of DD Services. I know sometimes people think, oh, they're part of the bureaucracy, as I've pointed out previously, and here again, they have been the leaders in shifting the system.
The Community Supported Living Amendments were the first attempt to say we can separate housing from supports. You don't have to be in a licensed group home to get Medicaid Home and Community-Based Services funding. I'll come back a little more on this in a little bit, but in this piece of legislation, eight states were given pilot projects for five years. All eight were phenomenally successful.
And in 1995, every state had the opportunity since then to amend their Home and Community Based Service Waiver and add what we would call supported living. Even in 2022 not every state has done this, unfortunately, in my opinion. That's only 32 years ago and we'll come into the research a little bit later.
So that was a big shift in thinking about Medicaid tied to a facility as opposed to your own home. And so that's been moving along at a mediocre rate.
1992 Rehabilitation Act again, remember we expanded eligibility, we've expanded the state match, we added extended evaluation, but there were still people being denied like Ed Roberts was as you're not feasible for employment or competitive employment. And the act was up for reauthorization.
And my colleague at that time, Dr. Christopher Button, who's now at the Office of Disability Employment Policy at Labor and I were both at United Cerebral Palsy along with Bob Williams, but Dr. Button and I decided we're gonna canvas the country. How many people can we find who have been denied services from the state rehab agency that is supposed to help them gain employment who in spite of it have become employed?
And this was pre-computer days, folks. This was fax machine days, not listservs on the computer. So we sent stuff out to a lot of people and networks across the country by fax. In two weeks, we had 600 people with a variety of disabilities from around the country saying, I'm one, I'm one, I'm one.
So again, when you do work in Washington, you look at what are the states represented by members of the committee that are gonna hear the issue and you wanna pick a constituent from that state. So we did.
And then we went cross disability. And we had the funds to bring them in, cover their travel. They had to have five minutes of oral testimony. They could have as much as they wanted to submit in writing, they had to bring the letter from the state rehab agency saying they were denied because they weren't feasible. And then they had to bring a current paycheck. So we had 600 of those from around the country. Okay? And that was pre-internet. If we did with internet, we probably would've had 6,000 or more.
But bottom line is the people came in, we met with them. Hearing started, first witness was called, I believe this was a person who was legally blind. And she told her story. They had a copy of the letter, they had a copy of her paycheck and how through networking and other contacts, she had found her job and Congress asked her some questions, thanked her.
Next person rolls up in a wheelchair and does his testimony. And same kind of story, different state, same kind of letter, paycheck, different kind of work. At that point, I thought several members of the Congress were gonna scream. By the end of the hearing they were so angry and it's in the public record.
What is wrong here? These people were supposed to be served by the funds from this law that we have passed. And they have been told they can't work. And in spite of our system, they are working.
The law then was amended. 'Cause prior to that, the rehab counselor got to play God. There were three criteria. One, you had to have a disability, physical, psychological, intellectual. Okay, otherwise, why would you go to Voc Rehab? Two, it had to constitute a barrier to employment. Again, why would you go there? Three I, the counselor, could look at you and your papers and determine is there a reasonable likelihood that you will be successful in gainful employment? And I had the authority to say, "Eh, sorry, I don't think you will, denied," Really, you're God? You've got a magic crystal ball? You know all these things about me just from looking at some files maybe and talking to me for 30 minutes?
The law was changed. And we'll come back to the exact language to presumptive eligibility. Everybody is eligible when they come in, walk in, roll in, call in, whatever it is. And we added meaningful and informed choice. We added integrated employment as an outcome. And we began to start putting in the language about careers, not just a job. So that how many of us are in the same job we were when we came out of high school or out of college? Not most of us, I don't think. Okay. But at least we've had choices.
So all of that was added 30 years ago. And the disability employment statistics as we'll see later are still pretty terrible. So we got lots more work to do because the law is nice, but if it's not implemented, it still doesn't help.
1996, Traumatic Brain Injury Act was introduced and all kinds of branches and the Health Resource Services Administration Center for Disease Control, NIH, all these places got components about looking at this epidemic of traumatic brain injury, which hadn't really been on too many people's radar screen prior to that.
Then a big one, 1999, we were beginning to be very concerned as we were moving employment that there were problems around benefits. And oh, I'm gonna lose my Medicaid, I'm gonna not get Medicare. What am I gonna do in all of that? And I can proudly say, 'cause the record is clear, I was the only person in Washington invited to testify, both before the Senate Finance Committee and the House Energy and Commerce Committee on the need for some way to mitigate this issue around health insurance or long-term services and supports, or both for people with disabilities who wanted to go to work but were worried that they would not have coverage.
And so the Ticket to Work opened up a whole new avenue of where you could choose your employment provider. The Medicaid Buy-in gave states permission to expand Medicaid, both the income and the assets that people could have. And most states have done that, but it's not well publicized unfortunately. And Medicare can be continued if you're on SSDI and go to work for 93 months. And all of these have automatic reinstatement if you lose the work.
And then funding was created for the Work Incentive and Planning Assistance offices, which are now funded by the Social Security Administration in every state to assist people before they go to work. And some counseling about benefits planning, doing an Excel spreadsheet. Here's what you get here, here's how much you can earn. Here's a bunch of incentives, all these other things. And this is how to plot the journey before you start and then how do you report and all of that to make sure that you don't go off the deep end by making a mistake. So that was put into place then. And people still don't know about that.
1999, we were back in the Supreme Court in difficult days and Lois and Elaine and the Olmstead case, and I'm gonna come back and talk about that a little bit more later. But basically this was a right to community integrated services, which is the hallmark of the Americans with Disabilities Act. Okay? Most integrated setting, very different from our special ed law, about least restrictive environment. Least restrictive said you could be segregated and you have to earn your way back. If you remember when I talked about that, most integrated setting starts here with a presumption, with appropriate supports and services, everybody can thrive in the community and you have to show why not in order to be removed from the place of liberty. So these two women got bounced around a lot and we'll talk about that case. But that was a landmark case.
Year 2000, government was in trouble and the federal government said, we're devolving. We're gonna pass the buck to the states. They tried to back out of a lot of stuff. We had September 11th, which shook us all up. And we still have ongoing memories of that problem in this country of the potential for attack, for assault. And then back to progressive legislation, the Help America Vote Act in 2002 put in place a lot of anti-discrimination and accommodation provisions for voting to assure that people with disabilities could vote, whether by mail or with accommodations at the voting booth or assistance or somebody could go with them or whatever. Again, we're in a very teetering situation now where some states are beginning to take back some of the voting rights. I don't know if we'll end up in court again, but it's getting messy.
2004, IDEA, The Individuals with Disabilities Act, again, was amended, transition language, very strong. We'll come back to that Public Law 108-310. And in 2004 coming on the heels of the ADA, the first Disability Pride Parade in the United States was held in Chicago Illinois, probably because Marca Bristo at Access Living had been so involved in the National Council and the ADA work.
Then we got digressed off to Iraq and Afghanistan in 2004. That sucked up a lot of energy for people. And then we made some more amendments to Medicaid. In 2005 we added Self-Direction. Oh, you don't have to go to a provider. You can get a budget and you can have certain ways that you can spend it and you can hire a provider or you can hire individuals or some of both. And that has occurred in a number of states. Again, some do it better than others, some are expanding it, some are not. But it's a state discretion. But it is there for advocates to pursue.
We also added Money Follows the Person, a major incentive to get people out of institutions. The research has been done on this by a group called Mathematica, paid for by the Feds. Every sample of people, whether seniors, people with physical disabilities or developmental intellectual disabilities who have left institutions and come into the community under Money Follows the Person with enhanced match.
The feds are getting smarter. They know that money can solve problems, use a business approach. Incentivize states to do good things, did better, cost less on every quality of life outcome that they could measure. And that was all part of deficit reduction 'cause it was gonna save money.
Also, 2005, we did further amendments to Medicaid to allow families to buy into Medicaid, similar to other Medicaid buy-ins. We got into the genetic stuff. In 2006 the first Act on autism got a terrible name. It got changed later. It was called Combating Autism. Yay, we wanna go fight. We wanna, what do we wanna do? Kill it. I don't know. But that got solved the following session by leadership from the Autistic Self Advocacy Network and the Autism Society of America and others. All right, so we got genetic discrimination issues on the table. 'Cause lots of places where you work, they can do blood tests and do genetic stuff. Oh, well, I'm not sure we wanna hire you. You're gonna get this maybe. So that's illegal.
Then we amended higher education in 2008 and began to add some stuff for people with disabilities and accommodations and Think College grew out of that and some other things. And then 2008, because we had been battled in Court on the ADA and what is a disability, we had to clarify that a mitigating measure, wearing glasses, hearing aids, crutches, using a walker, doesn't say you don't have a disability and you're not qualified for protection against discrimination in employment.
There were a number of cases that were messy in the Courts, and this was a fix in the law to qualify what does it mean to have a disability? What does it mean to make you eligible for protection under this Civil Rights law?
2008, again, Mental Health Parity and Addiction Equity Act. This is a superb piece of bipartisan legislation. Many of our pieces are, what was going on here as healthcare was expanding and getting fairly good, what we were learning is people who needed mental health services were getting little or reduced comparable benefits for mental health services and treatment, even for prescription medications. So in the wonderful world of political negotiation, former Senator Paul Wellstone from Minnesota led this initiative because he had a brother with significant mental health issues and was willing to go public about this stigma and talk about the financial drain on his family for inpatient outpatient services, medication therapies, et cetera.
And lo and behold, on the conservative right of the aisle, Senator Domenici from New Mexico, who at that time chaired the Senate Finance Committee, went public about his daughter with chronic schizophrenia. Oh my God, a liberal Democrat and a conservative Republican coming together because they both understood the blatant discrimination by insurance companies against their family member 'cause they had a mental illness or a mental health issue.
Ladies and gentlemen, when you get that kind of bipartisan support, who do you think is gonna vote no? Very few people did, passed unanimously, we're still going through iterations of it. But this was a major landmark to begin to say to insurance companies, you can't deny mental health. It's health. And some of it may even, in fact, now we know be neurological, may be biological, we're still debating where all that is. But there is a system in place and you need to buy it and you need to pay for it.
And you can't say, we're gonna cap that, but we won't cap what we pay over here for physical health. Or we'll limit the number of outpatient visits you can have to see a psychotherapist, but we won't limit how many follow up visits you can have for your skin cancer. No, you can't play that game anymore. Parity is the name of the game. That was a biggie.
Okay, just like in Fair Housing in 2009, disability was added as a protected class in the Hate Crimes law. So we're coming down to home stretch now.
2010, this is a wonderful story. Again, different from the Katie and Julie Beckett about Rosa Marcellino in the state of Maryland, who at this time I think was 10 or 11 years old, and her mother, and Rosa and her mom were not happy that Rosa, who had an intellectual disability, but in those days still was called mentally retarded, was called a retard by people in school, other people, etc.
And they went to their senator, Barbara Mikulski from Maryland who comes from a Polish background and was certainly understanding and sensitive to slurs and negative language about people who come from Poland. And so she could understand Rosa's concern. Rosa's Law passed unanimously to eliminate the word mental retardation from every federal law and replace it with the term intellectual disability.
One young lady and her mom, don't ever forget the power of one in advocacy. There are strength in numbers, I'm not knocking that, this didn't cost any money, but it was a powerful piece of legislation, again, to redefine the culture and change the values.
Retard, idiot, imbecile, moron. Ooh, come on. Not nice mongoloid, old days. Yeah, we don't like those. So that was good.
Same year, Supportive Housing was added in the housing legislation, and that allows for what's called 811 funding and all kinds of money, but not enough. We'll talk about that later.
And then we got to the infamous Affordable Care Act, often known as Obamacare. But for us, beyond the expansion of who could get Medicaid was Medicaid Community First Choice. And there are, as you can see, six or seven states that have added this, which give it preferential treatment and a higher match for states that provide personal assistance and support as an alternative to institutional or long-term services and supports in a place.
Then we had budget reduction stuff. And finally, that Wyatt Stickney case in Alabama got closed even though they were supposed to make it better by the Governor on September 30, 2011 when he looked at the cost numbers and said, "This is ridiculous, we're closing it." The Chamber of Commerce in Tuscaloosa, where it was located, were livid. You can probably Google and find the video of his giving the speech at a Chamber of Commerce meeting because it was a mainstay of the economy. Well, they figured out what else to do.
All right, moving along, 2014, the President signed an Executive Order to eliminate that sub-minimum wage. Remember that's 1938 for federal service and concession contractors. Prior to that, they could still be paid sub-minimum wage and raise it to $10.10 an hour. So sub-minimum wage is gone from the federal government in its workforce.
And a big one, 2014, Workforce Innovation and Opportunity Act, better known as WIOA was passed.
Customized Employment, which we will talk about, was added, a comprehensive definition of Competitive Integrated Employment was added. We'll look at that in a little bit. And a priority was put in place on 18 to 24 year olds for the state Voc Rehab agency supported employment money. I wasn't in DC at the time, but I thought I had it right.
But I called a couple of people after that passed, and I said, "So am I right that the reason you're prioritizing 18 to 24 year olds is because you know you can reduce dependency and enhance quality of life?" And they said, "Yeah, Allan, that's why we did that." So Congress isn't dumb, ladies and gentlemen. They want to change the trajectory. They heard the testimony in the hearings, they've read the research, they know this can be done. And state rehab agencies have to have 50% of this money spent on 18 to 24 year olds. Again, with presumptive eligibility. They can't cream and select, they do, but they shouldn't. So this was a major put forward about we're gonna change the landscape or at least try to.
And then the other thing in 2014 is we had the Medicaid federal agency after several years of rules and comments and meetings and whatever, come out with what's called the Home and Community Based Services settings rule and Person Centered Planning Rule. And we'll do a deep dive on both of those in a little bit.
So that's kind of how we've gotten to where we are. We have a lot on the table. We've moved the ball considerably on paper, in language, in values, in outcomes. Now all we have to do is make it real in everybody's life.
It's 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 8th 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. 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 waivers.
47th, coming up to 50 pretty soon, of the Individuals with Disabilities Education Act. Originally the Education for All Handicapped Children's Act.
The 52nd of the Developmental Disabilities Assistance and Bill of Rights Act.
The 57th of Medicare and Medicaid.
And the 87th of Social Security.
And so the question is, where are we?