I met Deborah . . .

In response to your request for stories about Deborah  

By Leslie A. Robinson, Ph.D.
I met Deborah when I was a clinical psychology doctoral student receiving training at the Baptist Rehab facility. It was about 1988, and Deborah occasionally came to our team meetings. I could sense that many of the staff were somewhat afraid of her, but it was obvious to me that she was fighting on the side of good, with a wicked sense of humor in the process! So I made a point to get to know her and to learn all I could from her. 

I later worked for Baptist as a young psychologist, and she was my compatriot there. I knew I could trust Deborah to tell me not only where the law stood, but also how to get creative in making sure patients' needs were met. 

She was kind enough to tell me how she lived with her illness, and in the process I began to really understand that it is possible to live a life beyond disability. That, essentially, is what Deborah did. 

These lessons came home in 1999, when I was diagnosed with cancer and underwent an amputation. I knew it was possible to deal with this, because I knew Deborah dealt with more. Further, she offered real empathy to me, even though my amputation was small in comparison to her challenges. 

I will always be grateful for her support during that time. 

For the past 15 years I've been an Associate Professor at the U of M. As head of our track in health psychology, I have offered a range of graduate classes designed to help doctoral students learn how to treat individuals with disabilities. Toward this end, Deborah would often lecture at my request. 

The students, needless to say, found her to be incredible. Deborah was particularly effective because she didn't mind talking about her own challenges, as well as educating students about the rights of people with disabilities. 

Her stories were always entertaining, and I felt very fortunate to have her in our classroom! In short, Deborah has played an integral role in my career development by giving me both personal support and insight into the strength of people with disabilities. 

I will miss her deeply.

The Tennessee Katie Beckett Legislation

By Allison Donald

Governor Bill Lee signed the Katie Beckett waiver allowing Tennessee to offer Medicaid to children who have disabilities on July 11, 2019. The waiver, regardless of the parent’s income, will keep youth with disabilities from being placed in an institution. 

This is a momentous victory for not only parents of children living with disabilities, but the children will be afforded the opportunity to live in an integrated community.  Before the passage of the Katie Beckett law in Tennessee, children with disabilities who require an institutional level of care, and who could be safely taken care of at home by their family with assistance, did not qualify for Medicaid if their parent’s income is over the limit set by the state. 

·       Katie Beckett Program Part A
Part A would establish a pathway to Medicaid services and essential wraparound home-and community-based services for children (under age 18) at home who qualify as disabled individuals under section 1614(a) of the Social Security Act, provided certain conditions are met, regardless of parent income and resources.

·       Part A authorizes the TennCare Bureau to require that parents of enrolled children purchase and maintain available private or employer-sponsored insurance if it does not exceed 5% of gross income. The bill amendment also authorizes TennCare to establish buy-in or premiums using a sliding fee scale based on parent or guardian income.

Part A authorizes the TennCare Bureau to require that parents of enrolled children purchase and maintain available private or employer-sponsored insurance if it does not exceed 5% of gross income. The bill amendment also authorizes TennCare to establish buy-in or premiums using a sliding fee scale based on parent or guardian income. The bill amendment establishes a priority enrollment for Part A for children with the most significant disabilities or complex medical needs whose families are most likely to be financially burdened by medical expenses.

·       Katie Beckett Program Part B
Part B is designed as a Medicaid diversion plan. The bill amendment authorizes the Tennessee Department of Intellectual and Developmental Disabilities to administer Part B. It would offer a capped package of essential wraparound services and supports as well as premium assistance on a sliding fee scale for children. Children enrolled in Part B would not be enrolled in full TennCare and Medicaid.

Eligibility for Part B is extended to children who are also “at risk of institutionalization” in these settings.

This victory was made possible by the hard work of the Tennessee Disability Coalition and the many parent advocates who took time out of their busy lives to advocate fiercely for their children. So many families traveled across the state, met with their legislators, and took action to make this possible. 

The Coalition and TJC have advocated for TN to adopt a Katie Beckett program for literally decades, and persistence pays off.   Tennessee we still have a long way to go, but this is a good start in our fight for access to affordable healthcare for all Tennesseans.

If your family may qualify for help under the Katie Beckett program, feel free to call TJC if you have questions or want to learn more (615-846-4711). Also, you can call your regional DIDD office West Tennessee Regional Office: (866) 372-5709.

Memphis has no shelter for women with disabilities

By Allison Donald
Working as an Independent Living Specialist and advocate has come with its own set of challenges and none more frustrating than trying to find an accessible women’s shelter.  In Memphis there are about 1,800 people experiencing homelessness, some are women and some have disabilities.

A few months ago a call came into our office from a woman with a disability looking for emergency shelter.  She began to tell her story and she said she had nowhere to go. Her story is an all too familiar when I am talking to woman living with a disability in Memphis.

As we usually do, we put our heads together as a team and tried to come up with a viable solution that would keep this woman off the streets.  MCIL is not an emergency shelter and our federal grant prevents us from owing local housing. We have to depend on our partners and the community to include women with disabilities in homeless shelters.

But mostly we were met with denial after denial for emergency shelter. Not because the shelters were full, but more than one shelter explained that having a customer with a visual disability would be too much of an insurance liability.

It was extremely frustrating to realize that most of these organizations saw her as trouble and somehow not within their mission. They did not view her as a human being who needed shelter and their services just like any other homeless woman. 

Even though MCIL was able to find her shelter it still didn’t leave me or the team with a good feeling.

“Being homeless in the city of Memphis,” said Tamara Hendrix, lead organizer for H.O.P.E. (Homeless Organizers for Power and Equality), “is a no win situation for a single woman especially, that is one of the reasons H.O.P.E. was founded to get a free accessible shelter for people who find themselves in that situation”.

People with disabilities are disproportionately represented among all people experiencing homelessness. According to the point-in-time (PIT) counts conducted in January of 2017 by communities across the country, it is estimated that on any given day nearly one-quarter (24%) of individuals experiencing homelessness are people with disabilities (86,962 of 369,081 individuals).

The federal Americans with Disabilities Act, popularly known as the ADA, which outlaws disability-based discrimination in places of public accommodation, which includes, for example, emergency overnight shelters and social service facilities – homeless service providers cannot turn away persons with disabilities simply because of their disabilities or terminate residents because of a disability or disability-related behavior.  However, individuals with disabilities whose behavior would constitute a direct threat to the health or safety of other individuals are not protected under the ADA.

Many of the homeless shelters are churches and many do not take public funds. In Memphis the emergency shelters and homeless service providers only have a slim relationship to a “place of public accommodation” that is covered by the federal law. While it seems clear that any shelter should treat people with disabilities equally, in Memphis, there is no clear federal, state or local mandate.

At any given point in time, 45 percent of homeless people report having had indicators of mental health problems during the past year. About 25 percent of the homeless population has serious mental illness, including chronic depression, bipolar disorder, and schizophrenia. While at any given time a homeless shelter may take-in a person with a disability, at the same time, emergency shelters feel that a psychiatric disability, physical disability or visual disability is also a reason why they may turn them away.

As a community in Memphis people living with disabilities are marginalized at every turn.  It is time Memphis made a direct appeal that emergency shelters must include all the members of our community, even people with disabilities.
 

Sixteen years ago today

Tennessee v. Lane
The State of Tennessee’s Appeal of the Lane Decision Should Be Withdrawn.

Sixteen years ago today, July 12, 2003, the former director of MCIL wrote this appeal to Memphis about the Supreme Court case Tennessee v. Lane. The entire nation misses the leadership of Deborah Cunningham and we remember the contribution that she made to our lives, community and country.

By Deborah Cunningham
Legal pundits call it “sovereign immunity,” but basically it is the principle that rulers are exempt. The unelected Attorney General of Tennessee is appealing his assertion that our state is exempt from protecting the Civil Liberties of Tennesseans with disabilities to the US Supreme Court. Tennessee v. Lane (No. 02-1667) will be heard in the upcoming session by the Supreme Court if Summers does not withdraw our state’s appeal.

Although citizens of Tennessee may feel most passionate about their Constitutional Rights, the state of Tennessee has opted to challenge those rights of Americans with Disabilities and assert the authority of a single state over the most important civil rights of individuals. Title II of the 1990 Americans with Disabilities Act requires that state and local government make programs and services “readily accessible and usable by individuals with disabilities.” Those governmental institutions may be the polling place, the courtroom, city hall and the state capitol building. And the Constitutional Rights that states are obligated to protect may be as essential as: voting, due process and equal protections.

1. Paul Summers continues the reputation for southern bigotry through the appeal of Lane.

The Attorney General of Tennessee asserts that Congress did not have the authority to require states to act to ensure these basic civil liberties. A similar challenge was made to the 1964 Civil Rights Act, claiming in Katzenbach v. McClung (Ollies BBQ) that a local BBQ shop was not covered by the “Interstate Commerce Clause” and thus exempt from Congressional authority to integrate.

Now as Americans look back, Congressional authority was necessary to achieve racial integration in the light of states resistance to altering the privileged system. The same is true for the civil rights of persons with disabilities. States are historically the most abusive of institutions; many states had sterilization programs directed at people with disabilities. The United States eugenics movement justified the sterilization, institutionalization, prohibition of marriage and preclusion of immigration of people with disabilities. The later passage of the discriminatory “Jim Crow” and immigration laws were based on eugenicists distorted viewpoint. In 1927, the U.S. Supreme Court legalized forced sterilization of people with disabilities in Buck vs. Bell.

The Constitutional Rights of people with disabilities are endangered by state actions. Without Congresses authority to make and enforce laws essential to the inclusion and integration of people with disabilities our nation will take a leap backward to a time when disability was hidden, isolated and locked away. The step backward is easy to see, because this nation is nearing the fiftieth anniversary of the Brown v. Board decision.
Although equality was clearly an individual’s Constitutional Right, US states could redefine separate as equal. Long before the Supreme Court reversed the ugly discrimination validated by Plessey v. Ferguson, it was clear that states did not protect equality, even separate equality and Paul Summers continues this legacy with his endangerment of the rights of Americans with disabilities. 

2. Tennessee’s Appeal to the Supreme Court endangers valid civil rights of people with disabilities.

Americans support the ADA. Nearly nine out of ten (87%), of those who are aware of the ADA, support and approve of the Americans with Disabilities Act. [A Louis Harris and Associates survey 1999].

When President George H.W. Bush signed the 1990 Americans with Disability Act he stated:

And now I sign legislation, which takes a sledgehammer to another wall, one which has for too many generations separated Americans with disabilities from the freedom they could glimpse, but not grasp. Once again, we rejoice as this barrier falls for claiming together we will not accept, we will not excuse, we will not tolerate discrimination in America.

Although most Americans support the landmark civil rights legislation, the ADA did not start out with reasonable enforcement on a federal level. Mouth magazine reported to its readers on the results of a five-month investigation into the U.S. Department of Justice and its enforcement of disability rights law. The report showed that in six years of enforcement, the Disability Rights Section of the DOJ had brought only one ADA case to trial and judgment, and between January 1, 1994, and December 31, 1997, the DOJ opened 6,339 ADA cases, filing suit in four. 5,525 cases were still open, unresolved, on January 1, 1998.

Even with a weak record of enforcement following the ADA, the situation of Americans with disabilities has significantly improved as reported by Dr. I. King Jordan, the first deaf president of Gallaudet University:
Certainly, life before the ADA was rampant with physical and social barriers that prevented disabled people from making even rudimentary decisions. Many were trained in sheltered workshops, or warehoused by families and educational systems embarrassed by their very existence, and convinced they had little potential for success. [Dr. I. King Jordan, “Colleges Can Do Even More for People With Disabilities,” The Chronicle of Higher Education, Section 2 (June 15, 2001), at http://president.gallaudet.edu/chron.html].

The Congress’ express purpose was equal access to government by all citizens. The priorities established by Title II make access to government the top priority of state and local entities. Additionally, since the ADA was signed, there are some critical facts that could be added to the record of discrimination by state governments.
Voting: In 1998 approximately 20,000 polling places were not accessible.

Integration: States have ignored the US Supreme Court’s 1999 Olmstead decision. More than two-thirds of the states have not even developed a plan for implementation of Olmstead.

Due Process: The evidence Congress had when it passed the ADA showed that 76% of state-owned buildings did not offer accessible programs and services. George Lane in 1996 could not access a courtroom in Tennessee because he uses a wheelchair and sued the state for denying him due process. Attorney General Paul Summers used this incident to allege that Tennessee does not need to protect some citizen’s Constitutional Rights.

Transportation: In 1989, one-third (36%) of the national bus fleet was accessible. … projections indicate that by 2002, the national bus fleet will be 100 percent lift/ramp-equipped. [Rosalyn M. Simon, “Status of Transportation Accessibility in the United States: Impact of the Americans with Disabilities Act,” in Proceedings of Seminar L Held at the Planning and Transportation Research and Computation European Transport Forum, Brunel University, England § 3.1 (Sept. 2-6, 1996)].

3. Tennessee does not advance “states rights” with the Lane Appeal The concept of sovereign immunity should not be resolved at the expense of citizens’ valid civil liberties. The legal issues may ignore that real people are involved and the real issues are ultimately not simply legal, but moral. The concept of sovereign immunity is even further removed from the lives of Americans today because individual US states do not exercise dominion over the lives of citizens. Federal Highway funds normally dictate a state’s transportation plans, Medicare significantly impacts states health-care procedures, Medicaid funds determine long-term care policy and National Education policy directs US states schooling.

The fact is that states work to get federal funding with one hand and push federal control away with the other. States could easily claim greater sovereignty by turning down federal funds and making their own rules or even canceling programs altogether; however, it is clear that states are not actually seeking greater sovereignty, they want more money.

Tennessee rather than working to become more “sovereign” is becoming more and more dependent on federal money coming into the state. I am familiar with this states failed long-term care policy because I have worked to help citizens live independently for the past 20 years. Our state almost exclusively funnels long-term care funding to nursing homes and other institutions, the most expensive and least desirable form of long-term care.

Seven years ago the Comptroller of the Treasury warned us that Tennessee faced a crisis in long-term care funding and as more Tennesseans are forced into institutions for long-term care, the Federal Medicaid funds that now are huge, will continue to grow. 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. [W. R. Snodgrass, Comptroller of the Treasury; Long-Term Care of Tennessee's Elderly, Oct. 1997]

For many years I have assisted with the help of Memphis ADAPT and the Memphis Center For Independent Living more than a dozen people with disabilities to leave the state of Tennessee in order to receive minimal assistance (bathing, dressing, wheelchair transfers) they need to live in other U.S. states that offer home and community services as an alternative to nursing homes. Without exception the Tennesseans with disabilities wanted to live and work in their own communities, they still do. I would like to remind Mr. Summers that forcing us to seek asylum outside of our own state in order to receive basic assistance is not only cruel and inhumane but also morally unconscionable. Unfortunately, Mr. Summers’ conscience appears to be unaware and undisturbed by citizens with disabilities in Tennessee who seek civil rights protection from discrimination.