25 Years of Demanding "REAL CHOICE NOW!"

25 Years of Demanding "REAL CHOICE NOW!" Remembering ADAPT's Historic 2000 Rally

By Tim Wheat

Twenty-five years ago today, on June 18, 2000, a powerful roar echoed through Washington D.C., as 800 disability rights activists converged near the U.S. Capitol. Led by the determined and unwavering voice of Justin Dart, this ADAPT rally ignited a quarter-century of relentless advocacy, demanding nothing less than "REAL CHOICE NOW!" and an end to the forced institutionalization of people with disabilities.

Dart, often called the "Father of the ADA," didn't mince words, bravely labeling the incarceration of people with disabilities in state hospitals, ICF/MRs, and nursing homes as "the hidden holocaust of 2000." His message to the President and Vice President was clear: "America demands REAL CHOICE now, MiCASSA now." And to the impassioned crowd, he fired up their resolve with a resounding, "Today we say no more bullshit." This wasn't just a rally; it was a declaration of war against systemic injustice.

The day began with a series of workshops, setting the stage for the collective action to come. Discussions ranged from ADAPT's rich history and procedures to critical topics like MiCASSA (Medicaid Community-Based Attendant Services and Supports Act parts of which are still evident in the LaTonya Reeves Freedom Act), defending the Americans with Disabilities Act (ADA) from attacks, implementing the landmark Olmstead decision, and effective negotiation strategies. Around noon, the energized contingent made their way to a plaza with the Capitol dome looming in the background.

As the crowd swelled, Mike Auberger warmed up the atmosphere with legendary ADAPT chants, building anticipation for the main event. At 2:00 PM, Linda Anthony officially welcomed ADAPT and other MiCASSA supporters to the "Voices and Faces of Institutionalization" Rally for MiCASSA.

The rally featured a diverse array of voices, all united by a common purpose. When Tim Westmorland from HCFA spoke, a symbolic white-bearded figure appeared, carrying an hourglass and scythe – a stark reminder that time was running out for those trapped in institutions. Andy Imperato, then president of the American Association of People with Disabilities, acknowledged ADAPT's crucial role, stating that "we would not get anything done in this town if it wasn't for ADAPT."

Perhaps the most poignant moment came from Kyle Glozier, who, wearing Justin Dart's hat, asked the gut-wrenching question, "What crime did I commit to be put into the crippled children's home?" He powerfully articulated how forced institutionalization shattered constitutional principles. Yet, his story also highlighted the transformative power of family, as he gratefully acknowledged his father's determination in rescuing him. "By the way, happy father's day dad," Kyle said, looking toward his father, "I love you." His words resonated deeply, reminding everyone of the personal toll of institutional bias and the hope found in community-based living.

Advocates from Georgia, Kansas, and the Washington D.C. area shared their personal experiences in nursing homes, further emphasizing the urgent national need for MiCASSA. Their testimonies painted a vivid picture of the lives impacted by the lack of choice and the critical importance of home and community-based services.

As the rally concluded, Mike Auberger underscored ADAPT's presence: "Washington must know that ADAPT is here." He passionately reminded advocates of their responsibility to "advocate for those brothers and sisters in nursing homes that cannot."

The rally then transformed into a powerful march down Pennsylvania Avenue to the White House. Passing iconic marble buildings like the Old Post Office, the Ronald Reagan Building, and the J. Edgar Hoover FBI Building, ADAPT carried its message directly to President Clinton and Vice President Gore: Americans nationwide were demanding an end to institutional bias.

Back at the hotel, ADAPT members gathered to plan their next moves. Mike recounted the very first ADAPT action in Washington D.C. back in 1984, inspiring newer members with the movement's long and impactful history. Stephanie Thomas perfectly encapsulated ADAPT's persistent progress with an analogy Bob Kafka often used: "It's like turning the Queen Mary," she said, "because it is such a huge project, it is hard to see the progress."

Twenty-five years on, the echoes of "REAL CHOICE NOW!" still reverberate. While significant progress has been made, the fight for full community integration and an end to institutional bias continues. Today, we honor the courage, tenacity, and vision of Justin Dart and all the ADAPT activists who, on that pivotal day in 2000, declared loudly and clearly that disability rights are human rights, and the time for change was, and still is, now.

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What are your thoughts on the progress made in disability rights and community integration over the past 25 years?

Rep. Cohen Asks for a Vote on Disability Freedom

 

LRFA Discharge Petition is being filed! A Discharge Petition signed by 218 members of the House moves a bill directly to the House floor for a vote!  Tomorrow morning (11/13), Representative Steve Cohen (D-TN-9) plans to file a Discharge Petition for the Latonya Reeves Freedom Act (HR2708) to send the bill directly to the floor of the House of Representatives for a vote. Even though a majority of the House signed on as cosponsors of the Latonya Reeves Freedom Act and the Chairwoman of the House Energy and Commerce Committee was open to holding a hearing, Republican Leadership in the House did not allow the bill to move forward.  That means, even with broad-based bipartisan support, the bill has been “stuck” in Committee. A Discharge Petition is a mechanism the House of Representatives uses when a bill is not able to move through the committee process even though a majority of the members of the House support it.  When 218 members of the House sign the Discharge Petition, the bill bypasses the committees and goes directly to the floor of the House for a vote.Congressman Cohen began the process to initiate the Discharge Petition in October. He intended to file the petition before Congress left for its break, but the House went out of session two days early.  Now that Congress is back in session, Congressman Cohen plans to file the Discharge Petition tomorrow morning. When we get 218 members of the House on the Discharge Petition, the legislation will bypass the committee and markup, going to the House floor for an up-down vote.   If every House Democrat supports the Discharge Petition, we only need to secure the support of a handful of the 15 Republican cosponsors who are still in Congress to move the bill to the floor for a vote. It is almost certain that the legislation would pass the House if we secure enough signatures to move the bill to the floor.  This demonstrates that even when a party doesn’t control the House, it can still advance bipartisan legislation! Although the bill will not pass the Senate during this Congress, moving the Freedom Act to the House floor and getting passed by the House of Representatives in a bipartisan vote would be a major milestone for the bill, our decades-long fight to FREE OUR PEOPLE, and our movement.  It would also demonstrate to Republican Leadership that we are ready to fight for Disability Freedom. How to get involved and help! Ask your Representative in the House to sign the Discharge Petition and vote for the bill when it gets to the floor. Publicly urge Members of Congress to sign the Discharge Petition and publicly express appreciation for the Members who do.  Consider publishing a letter to the editor or a blog post supporting the legislation and Disability Freedom, urging its swift passage in the House.  Explain the importance of this legislation.  We all know people whose lives would be impacted by this legislation.  Eliminating the fundamental alteration defense is a huge step forward for those who cannot currently access services to remain in the community. Pushing back against the ableist idea that some of us are “too Disabled” for freedom promotes the framework that all Disabled people have value and deserve freedom.  Disability Freedom can propel us and our entire movement forward.  We need to communicate that and mobilize our community. Join us in DC to advance the Discharge Petition and support Disability Freedom. ADAPTers are hosting a Legislative Reception with the House sponsor and have begun planning for people to be in DC when the bill would move to the House floor. The legislative reception will be in the Transportation Committee Room, 2167 Rayburn, on November 19th and begin at 5:00 PM. If you want more information email us at: LRFA@adapt.org

 

Why We Need the Latonya Reeves Freedom Act

EDITOR'S NOTE: The Latonya Reeves Freedom Act was introduced by Memphis Congressman Steve Cohen. This Blog answers many questions people have about the bipartisan legislation and why, in 2024, this is an important time to support this bill.

I. Why We Need the Latonya Reeves Freedom Act

The Supreme Court’s Olmstead decision doesn’t protect everyone from unwanted institutionalization. Olmstead is an interpretation of Title II of the Americans with Disabilities Act which covers state and local government. Although most people receive Long Term Services and Supports (LTSS) through Medicaid which is covered under Title II, not everyone does. For example, some people may receive LTSS through insurance companies funded by private equity. Because those entities are not covered by Title II of the ADA, Olmstead doesn’t apply to those individuals.

Under Olmstead, treating professionals are the gatekeepers of Disability Freedom. Twenty-five years ago, the Supreme Court ruled in Olmstead that a Disabled individual had a right to receive services in the most integrated setting when treatment professionals determine that community placement is appropriate. That means under Olmstead treating professionals can deny a Disabled individual of their right to live in freedom.

Olmstead was a historic decision, but we have made limited progress and, in fact, have lost some ground. Our community celebrated 25 years of the Olmstead decision this year, and although funding for community-based services has increased and people have moved into the community because of the decision, we cannot deny that a quarter of a century later Disabled individuals continue to be locked away in institutions. 

Let’s look at the numbers. According to the US Census, in 2000, a year after Olmstead was decided, there were 1.72 million people in nursing facilities according to the US Census. Twenty years later, in the 2020 census, that number only dropped to 1.68 million people. That’s a small reduction (4.8%) over two decades post Olmstead, but – even worse – over those two decades the number of people under age 65 in nursing facilities increased by 53.0%!

States are not required to create new programs under Olmstead. Although Title II requires that states reasonably accommodate Disabled individuals, states are not required to fundamentally alter their programs or create new services. That means states do not need to change eligibility requirements, establish new waivers, or create new services if they aren’t already in place – even if that means Disabled individuals are forced into institutions. As an example, a Deafblind individual may require the assistance of a Support Service Provider to avoid going into an institution, but the state is not required to establish a program to provide such services under Olmstead.

The Olmstead decision and other federal legislation don’t address the problem that Disabled people in the community who use Long Term Services and Supports (LTSS) can still be forced to go to congregate settings. LTSS provided in the community can be restrictive, and Disabled people can be legally forced to go to congregate settings to get assistance with using the bathroom or eating a mid-day meal. Others find themselves institutionalized in their own home by policies and systems – including Electronic Visit Verification – that restrict their freedom.  This prevents Disabled people from pursuing education or employment and generally participating as full members of society. 

The Olmstead decision and other federal legislation don’t address the problem that Disabled people in the community who use Long Term Services and Supports (LTSS) can be denied assistance they need to lead a full life.  Medicaid-funded LTSS provides medically necessary assistance – getting folks in and out of bed, bathed and dressed – but life is more that meeting one’s basic needs.  Life includes caring for their children and pets, but Medicaid rules often prevent people from utilizing their services for these functions.  People should not be denied these joys because they are disabled!

Olmstead doesn’t address emergent needs.  During the pandemic, advocates were not successful in utilizing the Olmstead decision to support people leaving institutions to protect themselves.  Research from Connecticut demonstrated that the vast majority of the hundreds of thousands of Disabled people who died in nursing facilities would have lived if they had an opportunity to get services and supports in the community.

Finally, the Supreme Court is poised to overturn Olmstead and reverse all of the progress we have made in securing Disability Freedom. Although Olmstead may not have been the strongest decision we could have hoped for in 1999, we have made advances using it. Even so, the Supreme Court is poised to overturn the decision and wipe out the gains we have made. 

Justice Clarence Thomas – in his Olmstead dissent – described exactly how he would reverse Olmstead. The Supreme Court has been very clear that it is willing to roll back decades of precedent and Justice Thomas now would have enough votes to turn his Olmstead dissent into the law of the land.  The Biden Administration tried to address this by writing and finalizing the Health and Human Services 504 rules to bolster the Olmstead decision, but less than a month later – in the Loper decision – the Supreme Court reversed the Chevron doctrine cleared the way for the courts to ignore those rules and reverse Olmstead. That makes the Latonya Reeves Freedom Act (LRFA) even more important.

The Latonya Reeves Freedom Act addresses all of these issues and protects people with ALL types of disabilities by establishing our right to live in freedom in federal statute.  It prohibits states and LTSS insurance providers from using waiting lists, cost or service caps, and inadequate rates to restrict access to home and community-based services… and more.

II. Current Status on the Bill

A majority of the House has signed on as cosponsors of the Latonya Reeves Freedom Act. 

Even though 16 House Republicans cosponsored the legislation, and the Energy and Commerce Chair was willing to hold a hearing, Republican Leadership in the House has refused to allow the bill to get a hearing which will allow it to advance to the floor for a vote. This means that, even with broad-based bipartisan support, the bill is “stuck” in Committee.

Representative Steve Cohen – House sponsor of the Latonya Reeves Freedom Act – filed paperwork that authorizes him to initiate a Discharge Petition which would send the Latonya Reeves Freedom Act to the floor of the House for a vote.  A Discharge Petition is a mechanism the House of Representatives uses when a bill is not able to move through the committee process even though a majority of the members of the House support it.  When 218 members of the House sign the Discharge Petition, the bill will bypass the committees and go to the floor of the House for a vote. 

The Discharge Petition was supposed to become active before Congress left for break, but the House went out of session two days early.  The Discharge Petition will open for signatures when Congress returns into session in November. 

This is an incredible opportunity.  The legislation would bypass the committee and markup, going to the House floor for an up-down vote.  If every House Democrat support the Discharge Petition, we would only need to secure the support of 3 of the 15 Republican cosponsors who are still in Congress. It is almost certain that the legislation would pass if we secure enough signatures to move the bill to the floor for a vote.  

This would solidify Congressional support for the bill’s language and set us up for success in the next Congress.  There are implications beyond folks who can be institutionalized.  Solidifying Democratic support through a Discharge Petition would address the issue – explained by Minority Leader Jeffries – that Disability Freedom is not considered a Democratic Caucus issue.  He instructed us to get this issue to “bubble up” if we want Disability Rights – including our right to live in freedom to become part of “Democratic canon.”

III. Why the National Disability Leadership Alliance (NDLA) organizations should support LRFA

LRFA is the only federal legislation that addresses the civil right of Disabled people living in freedom.  There is no other legislation in Congress that addresses the risk to Olmstead or establishes in statute that a Disabled individual has a right to live in freedom.

LRFA is the only federal legislation addressing the LTSS issue that is moving in the House of Representatives.  The Latonya Reeves Freedom Act has 222 cosponsors in the House.  Of those, 16 are Republican.  We have a reserve of additional Democrats who have been previous cosponsors but not cosponsoring because they are in leadership positions.      

In comparison, the HCBS Access Act (H.R. 1493) establishes permanent, mandatory funding for HCBS, expanding access and ensuring availability across states.  The legislation has 12 Democratic cosponsors in the House.  No Republicans support the legislation.  

The HCBS Relief Act (H.R. 6296) temporarily increases the applicable Federal Medical Assistance Percentage under Medicaid for certain approved home- and community-based services that are provided during FY2024-FY2025. It has 5 Democratic cosponsors.  No Republicans support the legislation. 

The Better Care Better Jobs Act (H.R. 547) establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services, increasing the Federal Medical Assistance Percentage for HCBS in states that develop plans and meet specified benchmarks for improvements.  It has 100 Democratic cosponsors in the House.  No Republicans support the legislation.  

Individuals and organizations may prefer a different legislative approach, but we cannot let our preference or interpersonal issues impact the progress of our community.

LRFA is sponsored by a Disabled member of Congress – Representative Steve Cohen – who has close ties to the Disability Community.  We have very few Disabled members of Congress.  When a member of Congress with a disability advances disability rights legislation, our community should rally around it. 

LRFA has been advanced by Disabled people who are directly impacted by this issue.  This legislation has been moved by Disabled individuals who utilize LTSS from across the country who have been working the Hill to FREE OUR PEOPLE.  NDLA member organizations are likely unaware of this because ADAPT was removed from NDLA in 2019.  That said, the group secured significant support during the last two Congresses.  After 10 years, the legislation appears ready to pass.  The NDLA organizations should uplift those in our community fighting for our rights.

IV. What you can do

Publicly urge Members of Congress to sign the Discharge Petition and publicly express appreciation for the members who do.  The legislation has moved under the radar, so we understand that groups haven’t communicated much about it, but we need to come together now.  NDLA can publish a letter supporting the legislation and urging its swift passage in the House.  If we don’t work together on this, we will undermine our ability to move other Disability Rights legislation forward.

Explain the importance of this legislation to your constituencies.  Every organization has members whose lives would be impacted by this legislation.  Eliminating the fundamental alteration defense is a huge step forward for those who cannot access services to remain in the community. Pushing back against the ableism idea that some of us are “too Disabled” for freedom promotes the framework that all Disabled people have value and deserve freedom.  Disability Freedom can propel us and our entire movement forward.  We need to communicate that and mobilize our community.

Join us in celebrating the legislation and advancing the Discharge Petition.  We are coordinating a Legislative Reception with the House sponsor in November and have begun planning for people to be in DC when the Discharge Petition moves the bill to the House floor.

The Caravan for Disability Freedom and Justice 2024

Memphis Tennessee

Wednesday, July 3, 2024 

I got a call about an hour before the Caravan was scheduled to arrive in Memphis. The Driver, CW, already had the schedule and just wanted to know if we had something before the Pizza lunch that was on his schedule. I said “no,” but I had packed the schedule with places to visit before the Caravan for Disability Freedom and Justice moved on. I wanted everyone to know that the Caravan had been here in Memphis.

Much of the reason for the Caravan is because of Memphis.

Less than two weeks before the Caravan arrived in Memphis, people with disabilities all over the country were celebrating the twenty-fifth anniversary of the US Supreme Court’s Olmstead decision (June 22, 1999). Generally, the decision reinforced the Civil Rights protections of the 1990 Americans with Disabilities Act for people with disabilities. Olmstead held that segregation of persons with disabilities is discrimination.

Olmstead is also the story of two women that sued the state of Georgia because they wanted to live in their own home. They did not wish to receive services in an institution. The inconsistency is that home and community-based services are more desirable and cost-effective than institutional services, but many states only offered services that people with disabilities needed in expensive institutions. 

That was true for Tennessee. And when Latonya Reeves was young, she and her family were facing a life in an institution. In Tennessee, the only way for Latonya to get the services she needed was to, as a young woman, move into a nursing home. 

Latonya Reeves video: https://vimeo.com/751940724

Latonya can tell her story much better than I can. But I can tell you of a time when the Memphis Center for Independent Living, now Disability Connection Midsouth, helped people with disabilities get out of institutions. The Center here in Memphis helped people leave the state of Tennessee where they could not get services and move to Colorado, like Latonya Reeves did, to live in their own home and not an institution. 

The Center launched a decades long advocacy campaign to change things in Tennessee. But while we worked to change the institutional bias here in our state, we helped people escape institutions to live in their own homes. The parallel to the Underground Railroad was so clear to us, we called it the Underground Railroad. I am sure that other people did this, but no one talked about it much. I cannot imagine a nonprofit that is so passionate about their mission that they would move a person out-of-state, sometimes against a doctor’s orders (AMA), away from their family and into the care of people that they had only talked to over the phone. 

Deborah Cunningham was the director of MCIL who came up with the idea and developed it into a workable solution for at least a dozen Memphians. It was a different time, but as I think back on the Underground Railroad, I just cannot imagine how brave Deborah was to risk her job and the Center to see people live in their own home. And how brave the individuals were who left their home, their family and friends to have independence. 

All over the country I am sure that people with disabilities remember a much different time, now twenty-five years ago, when we did not have the same choices we have today. Please celebrate our Freedom and Justice and follow the Caravan in your area. 

CW and I got photos of the staff of Disability Connection Midsouth and the Arc. We stopped at Graceland, STAX, The Lorraine Hotel, The Pyramid (Bass Pro Shop), Beal Street and other landmarks around Memphis. Congressman Cohen met us at The Arcade, to get a photo with the Caravan in his Latonya Reeves shirt. 

I am really proud of this story in Memphis history. But I also know that for Latonya and all the people with disabilities who did escape on the Underground Railroad, there were many more who never knew what life was like outside of the institutions. I know we still have people, old and young, who will die in an institution.

Support the Latonya Reeves Freedom Act (H.R. 2708 and S. 1193), introduced by Rep. Steve Cohen from Memphis. The bill secures our right to live in the community and not, because of our disability, be forced into an expensive institution. 

Photo Album from Memphis: https://flic.kr/ps/CRKuE

This is a photo of the Caravan at the institution were Latonya Reeves was in Memphis. Now defunct, the property is still kept up, but it is empty at this time. A reminder of our segregated past. 

The Supreme Court to review 'separate but equal' for people with disabilities.

EDITOR’S NOTE: This article was written Twenty-Five years ago before the Landmark Olmstead decision on June 22, 1999. It is a good description of what the case was about and we hope that you will enjoy it and relive the importance of this decision for people with disabilities. 

By: Tim Wheat

On April 21, the United States Supreme Court heard oral arguments in Olmstead v. L.C. No. 98-536. The case involves two cognitively disabled residents of a state hospital who petitioned Georgia to allow them to receive services in the community instead of being confined to an institution. The 11th U.S. Circuit Court of Appeals ruled in their favor last year and today they live in their own homes, in the community. Georgia's Commissioner of the Department of Human Resources Tommy Olmstead appealed the Circuit Court's decision and Tennessee Attorney General Paul Summers has signed on to an amicus brief with six other U.S. states supporting Olmstead's appeal to the U.S. Supreme Court.

Two Georgia citizens, Lois Curtis and Elaine Wilson, sued under Title II of the 1990 Americans with Disabilities Act (ADA) which requires that services offered by a public entity be delivered in "the most integrated setting." Georgia argues that forcing citizens to live in institutions does not constitute discrimination because non-disabled people do not receive such services, no "discrimination" in service delivery can take place. The ADA gives no protection to individuals with disabilities, Georgia contends, who receive services designed only for people with disabilities.

The Congressional findings in the ADA itself counter the rhetoric of the Olmstead petitioners. The federal civil rights law explicitly states: "Segregation of disabled people continues to be a serious and pervasive problem." Congress further made it clear in enacting the ADA that discrimination against individuals with disabilities persists in a wide variety of areas of social life, including "institutionalization." Since non-disabled people are not institutionalized, obviously the ADA is intended to end the isolation and separation from society of people with disabilities.

Those supporting Olmstead have adopted the erroneous reasoning of the Supreme Court in Plessy v. Ferguson. Justice Brown wrote in the majority opinion of Plessy, over a hundred years ago, that legislation cannot eradicate "physical differences," and therefore separate railroad cars were justified for different races. Similarly, petitioners hold that the ADA cannot eliminate physical differences that warrant people with disabilities being separated from typical social and community activities. Georgia asserts that separating people with disabilities is a state's prerogative, consistent with the ADA, and not discrimination.

Separate is not equal. Sen. Lowell Weicker, an original sponsor of the ADA in 1989, explained the aim of the civil rights legislation to Congress: "We have created monoliths of isolated care in institutions. It is that isolation and segregation that has become the basis of discrimination faced by many disabled people today. Separate is not equal. It was not for blacks; it is not for the disabled."

Resistance to non-institutional alternatives comes from the entrenchment of the nursing home industry and lobby. Before the summer of 1965, when the Social Security Act was amended to authorize Medicaid, there was no nursing home industry. Now, nationally the nursing homes special interest lobby is one of the 50 most exorbitant spenders for political favors. In Tennessee only three other interest groups spend more to influence our governor and legislature than the nursing home lobby.

More home and community based services are not any more expensive to Tennessee, but they can represent a huge loss to the subsidized nursing home industry. Currently nursing homes face almost no competition for the $750 million, mostly Medicaid, that flow into this state intended for the long-term care of Tennesseans. Ninety-five percent of the public funds for the long-term care of Tennesseans are paid to facilities.

Tennessee is dead last among U.S. states in provision of alternatives to institutional care. The 1997 Tennessee comptroller's report mentioned the success of Wisconsin, Oregon and Washington. Between 1979 and 1995, Oregon cut long-term care costs by $400 million. Between 1982 and 1992, the report declared, the total number of nursing home beds in those three states dwindled and home and community services increased. Yet Tennessee still prefers to offer, almost exclusively, the most expensive and least desired form of long-term care.

 

Six Tennesseans with physical disabilities have sued the state Department of Health for failing to provide services in the "most integrated setting appropriate" to their needs. The six plaintiffs in Newberry v. Menke, filed this past December, all face relocation to a nursing home. Altogether Tennessee pays less than 30 thousand dollars a year to provide the services in their homes, but nursing home placement will cost Tennesseans $219,000.00 per year.

Georgia also contends that home and community placement would be a financial burden. In the

January 1999 State Legislative Report, however, the National Conference of State Legislatures said "the annual cost of institutional care for people with disabilities is more than double the  average annual cost of providing home and community-based services." The report continues, "States across the country have realized significant savings by offering services that allow people with disabilities to live in the community rather than in nursing homes and other institutions."

Provision of institutional services alone are both unnecessary and more costly. Governor Sundquist has resisted expanding home and community based services to lower Tennessee's long-term care bill because he says he fears creating a "new entitlement," that would bankrupt the state.

The "new entitlement" that Sundquist fears are eligible individuals that are spending their own resources to stay out of a nursing home and might request home and community based services if they were available. Many people that are eligible in Tennessee do not seek any services at all because those services are only obtainable in a nursing home. Throughout the nation, most community-based long-term care is provided by family members and friends (Enid Kassner and Robert W. Bectel, MIDLIFE AND OLDER AMERICANS WITH DISABILITIES: Who Gets Help? 1998). Therefore, Tennessee controls its long-term care costs, in part, by providing citizens with only the worst choice possible.

The tiny new long-term care plan that advocates have struggled for - against the nursing home lobby - will save Tennessee relatively little. By setting aside new funding, the new home and community based programs will not "compete" for the huge resources of the nursing facilities. The money does not "follow the individual," as the original Tennessee Senate Bill 2411 read. As a result, the state's nursing homes are guaranteed their huge government subsidy without interference or competition with the more desired and cost effective community services.

This month a Harris poll showed that nearly nine out of ten Americans supported and approved of the ADA. While most people see the impact of the ADA in accessible parking, buses and buildings, the essential goal of integrating society is less visible. The occupants of institutions are often the most disenfranchised members of our community. The effect of institutionalization is disempowering along with the loss of contact with family, friends and traditional community roles. President George Bush stated the 1990 Americans with Disabilities Act would break down the "shameful wall of exclusion," separating people with disabilities from other Americans.

The Latonya Reeves Freedom Act

Latonya Reeves worked with MCIL to leave an institution here in Memphis Tennessee and live independently in Denver Colorado

The Latonya Reeves Freedom Act (LFRA) is named in honor of this disability activist who unfortunately passed away on January 9, 2023. But the work continues and we will push forward with this important work to pass this imperative bill. If you do not know Latonya and her story, please go here to review her video: 

https://latonyareevesfreedomact.org/ 

 

The LRFA of 2023 will be introduced in the 118^th Congress by Rep. Steve Cohen (D-TN) and Sen. Michael Bennet (D-CO) on Wednesday, April 19^th which is Latonya’s birthday. *Link to Sen. Bennet’s one pager on the 117^th bill: https://www.bennet.senate.gov/public/_cache/files/5/7/572d7afd-46a6-4d44-946b-80890e4332f5/807B492A6970479D44399E41594B5C6E.laytona-reeves-freedom-act-one-pager-final.pdf 

 

The legislation will enable individuals with disabilities to live independent lives in their community and would: 

● Establish a comprehensive State planning requirement with enforceable and measurable objectives to transition individuals with disabilities out of institutions and into the most integrated setting, if they choose that transition; 

● Prevent State governments and insurers from engaging in discriminatory practices, policies, or rules that would prevent an eligible individual ● from receiving community-based LTSS; 

● Identify and address disparities in the provision of community-based LTSS; and 

● Accelerate State compliance with the integration mandate of the ADA. 

Many are fighting the multi-faceted outcomes of the SCOTUS case of Dobbs v. Jackson Women’s Health Organization. The shift in the Supreme Court raises concerns about the future of Olmstead v. Lois Curtis case as well. Disability is also not in the US Constitution and therefore the civil and human rights of the disabled are at jeopardy among numerous other multi-marginalized communities. Multiple groups are fighting for bodily autonomy issues and the right to live in the community and not be institutionalized are very much a part of this fight for bodily autonomy.  

 

CDR has written a blog post about this concern – a concern that has actually moved many in Congress to engage in the passage of the LRFA:  

https://cdrnys.org/blog/advocacy/scotus-dobbs-decision-raises-serious-concerns-for-future-of-olmstead/ 

 

For many years there have been multiple activists who have said that solutions focused only on a mandatory Medicaid benefit or enhanced funding leave behind BIPOC with disabilities who face a multitude of barriers to community integration, including the lack of affordable, accessible, integrated housing, including housing that is independent of service delivery. The LTSS fight continues to be centered and led by white privileged disabled people with a message of being able “to stay at home”. But what about the millions of disabled people who are stuck inside institutions with no housing? Many of whom are Black and Brown disabled and left out of the conversation and fight for freedom.  

 

Recognizing the threat to the SCOTUS Olmstead v. Lois Curtis  case has raised the urgency of moving the LRFA forward. We understand that providers who operate institutional settings may have concerns about the bill.  To address that, the sponsors (Cohen & Bennet) are adding a construction clause that clarifies the legislation does not require an individual with a LTSS disability live or receive services in a more integrated setting if they choose a less integrated setting or institution. 

ADAPT's Consistency in Advocacy

ADAPT’s success in the case MR v Dreyfus was spectacular; but did you notice some similarities with an earlier ADAPT campaign?

Editor's Note: This is a look back Ten Years Ago Today at the issues of the disability community. Ten years ago the state of Washington ended its appeal of MR v Dreyfus; More than ten years before that, ADAPT was successful in getting the state of Washington to remove their support for Olmstead. 

By Tim Wheat

ADAPT and our allies' success in making Washington Governor Christine Gregoire end the appeal of MR v Dreyfus was a terrific grass-roots success. Some long-time ADAPT activists however may be reminded of a similar campaign in late 1998 and early 1999 to convince US states to remove their names from an amicus brief in support of the state of Georgia that was going to the US Supreme Court.

Back in 1998, Tommy Olmstead, Commissioner, Georgia Department of Human Resources, struggled to keep two women locked away in institutions even though the state’s professionals had found them more suited for the community. Georgia lost in the 11th US Circuit Court and was appealing the case to the US Supreme Court. Commissioner Olmstead argued that forcing citizens to live in institutions does not constitute discrimination because non-disabled people do not receive such services. No "discrimination" in service delivery can take place if no comparable services exist. The ADA gives no protection to individuals with disabilities, Georgia argued, who receive services designed only for people with disabilities.

Georgia was successful in getting over half the US States to support their appeal to the US Supreme Court by signing on to a friend-of-the-court brief that argued home and community services would become a “new entitlement." The amicus brief of the states also perversely contended that even though home and community services were less costly than expensive institutionalization, the ADA’s requirement for integration would be a financial burden to states and would be an “unfunded mandate” from the federal government impeding state sovereignty.

But ADAPT was clear. This was an issue of Civil Rights and ADAPT led the grassroots campaign to ensure the US Supreme Court did not overturn our right to live in the community. Twenty-six states signed onto the amicus brief supporting Georgia. ADAPT could have little direct impact on how each of the nine justices would rule, but the grass-roots group could change the minds of the states that supported Georgia.

One by one ADAPT struck in the US states that had signed on in solidarity with Georgia’s appeal. By April, when the Supreme Court heard the oral arguments in the case, the number of supporting states was down to 11.  Although judges say they make decisions based on facts and issues of law, ADAPT and our allies had reduced the support for Georgia from over half of US states, to just a handful. The ADAPT campaign was truly a tremendous grass-roots success.

On March 9, 1999 Governor Gary Locke and the Attorney General of Washington wrote a letter to explain why they had removed their state from the Georgia amicus brief:

"The Governor and I have each affirmed our strong support for better services and choices for persons with disabilities.  We do not want our signature on this amicus brief to call that commitment into doubt and create unnecessary fear and anxiety."

On June 22, 1999 the court released its decision in Olmstead. The ruling upheld the ADA “integration mandate” and called inappropriate institutionalization discrimination. ADAPT has called it our community’s “Brown v Board,” because it requires integration.

"Today's decision is a critical step in changing how and where people with disabilities receive services necessary for everyday life," said Mike Auberger, a national organizer with ADAPT, back on the day the Olmstead decision was announced.  "It tells states that segregated services will no longer be tolerated.  But our fight for REAL choice continues."

The fight for REAL choice has continued. The Attorney General who signed the letter removing the state of Washington from the Georgia amicus brief was Christine Gregoire. Now, thirteen years later: Governor Gregoire; the Governor who was the target of a grassroots campaign to protect the gains of Olmstead by not appealing MR v Dreyfus.

One very powerful aspect of ADAPT that is often hard to see is our consistency. People looking for immediate results and instant gratification may not understand the importance of the ADAPT action opposing Tommy Olmstead’s case against two women in Georgia. But the consistency of ADAPT’s fight for almost 30 years has amplified the power of our community. FREE OUR PEOPLE!