The most historic legal decision affecting the civil rights of people with disabilities celebrates its 16th anniversary today, June 22nd. In 1999, the U.S. Supreme Court rendered its landmark decision in Olmstead v. L.C., cementing the Americans with Disabilities Act’s integration mandate. The groundbreaking decision has helped thousands of people with disabilities leave institutions to live in the community, but its legacy continues to unfold—in terms of enforcement and application beyond community living.
In this myDFI interview with Kelly Buckland, executive director of the National Council on Independent Living (NCIL), we mark this year’s anniversary by diving into the challenges – old and new – to full community integration, and the not-so-surprising importance of telling your story.
An interview with Kelly Buckland; June 22, 2015
This interview also appears on The Advocacy Monitor, a project of the National Council on Independent Living.
myDFI: Let’s talk about the National Council on Independent Living, which you lead, and the Independent Living (IL) Movement. The history of NCIL – in many ways – is intertwined with the history of IL. Is that the case?
Kelly Buckland: It is. The Independent Living Movement is a social movement and NCIL is sort of a structured expression of it. IL rejects the traditional rehabilitation model of disability, which suggests “we” need to be fixed. We don’t need to be fixed; it’s the environment, processes, structure, etc.
This radical change really was led by Ed Roberts – the father of IL. Ed was attending the University of California at Berkeley and wanted to live on campus, but the university wouldn’t let him. Instead of the dorm, he lived in the infirmary at Cowell Hospital. (I can tell you from personal experience, this doesn’t make any sense. While attending college in the 70s, I had to live in a nursing home for close to a year. Was absolutely the worst experience of my life!)
Building on his experience and that of others at Cowell Hall, Ed took notice that students with disabilities graduating from Berkeley and elsewhere, with skills ready for the workforce, were unable to find work. So he and others opened a storefront off-campus and started practicing what they were trained to do. They called this community-based storefront the Berkeley Center for Independent Living (CIL). They were able to secure state funding and later federal funding to replicate the idea. The federal funding was authorized in 1978 and the initial grants went out in 1979—for just 10 regions at first, expanding later.
The presence and impact of CILs grew nationally. Along the way, it became apparent in their dealings with federal agencies (the various CIL directors came to D.C.), observing how paternalistic lawmakers’ and agency staff ideas were, that the CILs needed a national organization to represent them. So NCIL was incorporated in 1982. At that time there were 10 centers; now, CILs are in more than 700 locations throughout the country.
NCIL is really an expression of IL, formed to advance the kind of public policy changes that require a national process. NCIL has been critical to bringing together, what otherwise could have been disparate voices, to achieve broader change.
myDFI: How has NCIL contributed to the Independent Living Movement?
Buckland: From Ed to the Berkeley CIL, the Americans with Disability Act (ADA) to the Olmstead v. L.C. decision, NCIL has been a driving force in IL. For example, when NCIL started working on the ADA—my first NCIL conference was 1989, and it was right before the ADA was passed—we marched in D.C. to get support for the ADA. This experience was very empowering for people who came to the NCIL conference. The national conference has been critical to helping grow the IL movement. People that come are very empowered by it. It’s a time for IL advocates to get reenergized. Another point that was really critical for the growth and advancement of IL was in 1992, when the Rehabilitation Act Amendments passed. The CILs previously had been funded through a state agency, but – in 1992 – the funding was made directly to the CILs. This gave centers a lot more autonomy to advocate, both at the individual- and system level to change how disability policy looks and works.
myDFI: What about the Olmstead (Olmstead v. L.C.) decision – how did NCIL contribute to its ultimate decision?
Buckland: After the ADA was passed, NCIL joined with DREDF [the Disability Rights Education & Defense Fund] to do some training on the ADA—we were involved not only with passing the ADA but also with implementing it. Of course included in that was the integration mandate (under Title II of the ADA, i.e., to provide people with disabilities opportunities to live their lives like individuals without disabilities). Title II was being challenged – of course – by states and local governments, including Georgia where Lois [Curtis] and Elaine [Wilson] were living in an institution for people with what were then called mental disabilities.
When that case worked its way up to the Supreme Court, NCIL was involved in helping with the amicus brief, organizing rallies on the courthouse steps, turning people with disabilities out in public—really trying to set the stage around how important this was. We knew it was important at the time, but I don’t think we knew how important it would end up being. It ended up being our Brown v. Board of Education.
That’s sort of the link into Olmstead, really: it is NCIL’s work in getting the ADA passed, being successful in getting that done, and then our work doing training on it around the country – and training on the integration mandate was part of that. Olmstead was, too.
myDFI: You and others in the disability community invoke Brown v. Board of Education in reference to Olmstead. Could you explain that?
Buckland: The Olmstead decision affirmed that we [people with disabilities] are able to live in the community, that we have a right to do so under the ADA. The ADA and Olmstead are linked in that way; the Supreme Court’s decision is, really, an extension of the ADA. Olmstead prohibited states, as Brown did, from segregating communities of people—in this case, on the basis of disability. Still early in the days of the ADA, the decision affirmed that unnecessary institutionalization of people with disabilities constitutes discrimination under the law.
myDFI: Can the Olmstead decision be viewed as an end-point for IL, or as an achievement along the way?
Buckland: It’s definitely not an end-point, but it also is more than an achievement for the Independent Living Movement. In the 16 years since Olmstead, it has helped open the door and laid a strong foundation for further advocacy of IL. But the promise of Olmstead hasn’t been fully realized and the decision is far from fully enforced across states.
myDFI: It has been 16 years since the Supreme Court issued the decision and reaffirmed states’ requirements under Title II of the ADA. Are we any closer to realizing the “promise” of Olmstead?
Buckland: There are tens, if not hundreds, of thousands of people living in nursing homes and other institutions on waiting lists, waiting to be moved out of an institution and to get “Home and Community Based Services.” This many years after Olmstead, we shouldn’t have hundreds of thousands of people waiting. Olmstead required these people be moved off in a reasonable amount of time. 16 years isn’t reasonable.
President Clinton followed the Olmstead decision with a directive to all state Medicaid programs to draw up plans to comply with the ruling and the integration mandate of the ADA but progress, and enforcement, has been slow. Having said that, it has received more enforcement in the past six years than the past 16. Following the 10th anniversary of the decision in 2009, President Obamacommitted his administration to Olmstead by making access to housing, community supports and independent living a priority, and the Civil Rights Division launched an aggressive enforcement effort. It is great to see it enforced but it continues to have a long ways to go.
myDFI: What is the biggest challenge to enforcement today?
Buckland: Accessible housing. For every new Congress and after every election, NCIL conducts a survey of our membership to determine priorities for our advocacy efforts. We just completed this survey and announced the results in February; housing came out as the top priority and it makes sense. Accessible, affordable housing is necessary for delivering on the promise of Olmstead: you can only transition to an integrated setting (or from school into adult life for youth with disabilities), if there is affordable, accessible housing out there. Simply put, if we don’t have accessible housing, you can’t do the rest of it.
The other thing that is becoming more apparent is availability. Most housing in D.C. and other major metropolitan areas is colonial, post-war, split-level or a ranch with a basement. Or you are looking at apartments or condos, and the affordability is really difficult. People are being priced right out of housing. If you’re getting a Social Security check, trying to make a house work in San Diego is pretty much impossible.
But we know it’s a challenge that can be overcome and we know NCIL – through the annual conference and its organizational efforts – can be a gathering force.
Between 2012 and 2014, CILs provided the four Core Services to nearly 5 million individuals with disabilities. In that same period, CILs moved 13,030 people out of nursing homes and institutions, and provided services such as housing assistance, transportation, personal care attendants, and employment services to hundreds of thousands of people with disabilities. And it saved the federal government approximately $500 million. These are incredible numbers especially when you consider only half of CILs receive federal funding and that funding totals $300 million—spread across three years.
Supporting individuals in their return to the community was being done by CILs when it wasn’t required but was the right thing to do. Transition Services are the newest of the five Core Services, added in 2015 under the Workforce Innovation and Opportunity Act. CILs now are the only federally funded program mandated to move people out of nursing homes and other institutions. So the opportunity for CILs to do more of this—it’s huge in terms of the promise of Olmstead, of the ADA’s integration mandate.
myDFI: In addition to the important work and opportunity surrounding accessible housing, what do you think accounts for the slowed progress around enforcement?
Buckland: It really has had a lot to do with people and leadership, particularly those in charge of the Department of Justice and who holds the post of Attorney General. [Former U.S. Attorney General] Dick Thornburgh had a child with a disability – so I think it really has more to do with people’s personal experience with disability rather than their political experience. People who have a disability or have a family member with a disability get this a lot more than people who do not have a direct connection.
myDFI: How does NCIL meet this “gap in understanding”?
Buckland: This is where NCIL is very effective. It is comprised of people with disabilities. The CILs’ staff and boards of directors are all made up of people with disabilities. The SILCs, too. And so that, of course, is who makes up NCIL. You have people with disabilities who are running a national organization that talks to Congress. We can really speak with authority because we have lived experience, a day-to-day understanding of what this means. We have expertise in this area and have been doing it for a very long time. We know how these programs work and how changes will affect these programs. This is not theory for us.
That’s what makes us experts. We are the best authority for what we need. And this is what helps us make our case to Congress: we speak from a place of personal experience. Like I mentioned, I lived in a nursing home. Want to know how that feels? Well, I did and I can tell you. You have an appreciation for how important it is for people to live on their own and in an integrated setting.
myDFI: Why are these personal stories so important to advancing Olmstead?
Buckland: Because Olmstead is personal. It’s about us making decisions for ourselves, including where and how we live. Sixteen years after Olmstead, these stories help us explain to Congress and others how changes impact us, and why it is so important for us to be at the table.
A good example is our recent work on the U.S. Department of Labor rules updating the Fair Labor Standards Act. NCIL has been engaged in the ongoing litigation surrounding the rules and a large part of that work has focused on sharing the stories of individuals impacted by these changes. Stories like those of Toni Marie Vincent of Lyons, Kansas.
Toni has Cerebral Palsy and, following the loss of her mother in 2004, has lived independently for more than a decade with the support of S.K.I.L. Inc. and a staff of personal care attendants and direct support workers she hired herself. In Toni’s own words, since transitioning from a nursing home in July 2004:
“My life has flourished since living independently in ways that are just amazing and unbelievable. And from the time my thumb print became my legal signature, I have taken care of all of the business one has in daily life… I would and do consider myself a contributing citizen of my city, state and nation.”
The services and supports Toni receives to remain independent include 24-hour services and Sleep Cycle Support. But as a result of changes the state of Kansas is making in response to the Labor regulation, Toni may lose access to these supports. For Toni, this loss isn’t theoretical; it’s real:
“I become scared when I hear the national government has or is going to make more regulations where the states are going have to cut the hours of care that people like me receive in our homes. Because I know if they cut any of my hours of care, especially the hours of Sleep Cycle, which is the scariest time of the day for me, I wouldn’t and don’t have any other choice but to return to a nursing home, which I really don’t want to do in 2015 at the age of 48.”
It is through these personal stories that NCIL and others are advancing not only the enforcement ofOlmstead, but fighting for improved self-directed personal assistance programs to fully recognize and achieve the integrity of the Olmstead decision.
Kelly Buckland is executive director of the National Council on Independent Living (NCIL), the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of organizations and individuals including: individuals with disabilities, CILs, SILCs and others advocating for the human and civil rights of Americans with disabilities. Learn more about NCIL at www.ncil.org.