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.

Punishment by Overpricing and Poor Service

Being disabled is tough enough without experiencing added cost when individuals in wheelchairs decide to travel within their metropolitan area. 

By Stephen Tennial

Hi, I am Stephen Tennial, and I am a wheelchair user who decided to start using cab companies for my transportation needs after many bad experiences with MATAplus. After the onset of COVID service with MATAplus got even worse.

Prior to the beginning of the pandemic I had begun to slow my usage of MATAplus. Instead of scheduling several trips at once, which some included recreation, I only scheduled trips related to work. Then the Pandemic happened, and I stopped using MATA services altogether because MATAplus is a shared ride and I was afraid of coming in contact with someone who had COVID.

I still had transportation needs, so I decided to start using a privately owned cab. At first, the prices were reasonable. I mean I would pay what I thought was 20 dollars more than an abled-bodied individual. An example of this would be a trip from Raleigh to Whitehaven would cost me 60 dollars. 

However, as time went on I began using different drivers due to various reasons i.e. (mechanical

issues, and scheduling conflicts). It was about this time that I saw a price increase across the board. The trip that I would pay 60 to go from Raleigh to Whitehaven increased to 100 dollars. The payment of 100 dollars would be the norm for any trip that I would schedule, unless I went to the Wolf Chase Mall, and that was 120.

My worst encounter with using cabs for transportation was actually my first experience with the Yellow Cab Company. This incident occurred in 2016 at the University of Memphis. Around 7:00 P.M. I had just gotten out of class on February 14. It was cold and raining, and I had a dinner reservation (which I made one month in advance) to go from the U of M to a nearby restaurant. When I contacted the company to ask where was my ride, they told me they had 3 drivers in wheelchair accessible vans, and none would be available. I explained to the cab company that I was in a wheelchair, and that I had made my reservation one month earlier. 

All I received was an apology, and I had to wait until 11:PM before I was picked up. Having a disability does not mean that one should be penalized by experiencing overpriced, and poor service.

Underground Railroad 2001

EDITOR'S NOTE: Twenty-three years ago today Willie Robinson, a consumer of Disability Connection Midsouth, left a Tennessee nursing home for a home in the community in Colorado. Back then, Deborah Cunningham, the Executive Director of MCIL, called this our Underground Railroad. Please note the progress that this Center for Independent Living has made.

People with disabilities leave the state of Tennessee to avoid nursing home incarceration. 

Willie Robinson has lived in Tennessee all his life. Today he is leaving because the unfair Medicaid policy will only provide him with services in the least desirable and most expensive place – an institution. 

Willie Robinson is moving from a Tennessee nursing home to his own apartment in Denver Colorado. Mr. Robinson is not only capable of living independently; he will be starting over in Denver Colorado where he already has his own place with attendant services. Willie is optimistic about job opportunities in Denver that are non-existent for Tennessee nursing-home residents. 

"Because Tennessee has no attendant services, I have lost my job, my home, and my car," said Willie Robinson to Tennessee Senator Bill Frist at the Memphis Center for Independent Living. "I live in a nursing home now and I have no choice about what time I get up in the morning, what I have for meals and what time I go to bed at night." 

The small programs that Tennessee has adopted to expand home and community-based services in our state may be effective in preventing or delaying some individual’s entry into a nursing home, however; Tennessee remains 50th in the nation at providing options to institutions. Every other U.S. state offers more cost-saving home and community-based services to provide citizens choices other than an institution. 

Missouri, for example, with a larger total population than Tennessee, spends nearly $100 million less of state money on nursing facilities and over $200 million less in federal funds [Medicaid Financial Management Report FY 2000]. Tennessee is the most chronic example of the need for national Medicaid reform. Ninety five percent of the public funding for long-term care is funneled into the nursing home industry. 

The for-profit nursing home industry gets more than half of its revenues from Medicaid, yet they are the fourth-largest lobby generously giving money to state lawmakers [Tennessee Registry of Election Finance]. The nursing home lobby has been involved in the guidance of the new programs for home and community based living and made sure that they did not cut into the nursing home industry's profits. 

Willie has been working to change the system in Tennessee that concentrates almost all the Medicaid long-term care funding to the nursing home industry. Senators Harkin (D-Iowa) and Specter (R- Pennsylvania) will introduce bipartisan legislation this session to reform Medicaid and give people with disabilities choices in long-term care. Willie will see the MEDICAID COMMUNITY ATTENDANT SERVICES and SUPPORTS ACT (MiCASSA) become law from his own home - his new home in Colorado.