PART TWO: The case for the Community Integration Act

The Community Integration Act

PART TWO: The case for the Community Integration Act

When Medicaid created long-term services and supports in the mid-1960s, the program inadvertently generated a bias to serve Americans in facilities and institutions. Now fifty years later and twenty-four years after the Americans with Disabilities Act, the community is much less accepting of segregating people with disabilities in expensive institutions.  

The bias is very evident to many Americans: “why not spend the money so the individuals can stay in their home?” The most rational claim is that serving people in their home, with their families, spending money in the local community, with access to employment is actually less expensive. Home and Community-Based Services (HCBS), do not represent a minuscule saving of state and federal Medicaid funds, diverting people from expensive institutional care can cut Medicaid costs in half. Harkin’s report states that Alabama’s Independent Living program cost under $11,000 per person compared to over $36,000 for people served in an Alabama nursing facility.

The Health, Education, Labor and Pensions Committee report also shows that while many states have increased the number of people that receive HCBS they have not necessarily decreased the nursing home population. Medicaid HCBS is only available to individuals at a “nursing home level of care,” but nursing homes have been effective at “back-filling” the institutions and preventing the states from saving federal and state funds. Maryland served over six thousand with HCBS between 2008 and 2012, but decreased the number of people in nursing homes by less than 400. Colorado likewise expanded HCBS to over five-thousand nursing home eligible people, but only decreased individuals in expensive facilities by 84.

Between 2000 and 2012 there was a 31% increase in the total amount of Medicaid funding for nursing homes. Nationally we paid a $12.4 billion more in Medicaid funding for nursing homes during those years despite an 18% reduction in number of nursing home residents.

At the time of the Olmstead decision, Tennessee was dead last in the country on providing alternatives to costly nursing homes. Our state spent 99.5% of federal Medicaid Long-Term funding on institutions in 2000 and has advanced that to 31.3% today. Tennessee has done well, but is still nowhere near where the state should be to comply with the Civil Rights focus of Olmstead. The Community Integration Act is what our state needs to rebalance our Medicaid funding and really give people the choice to live at home and not be forced into expensive institutions.

PART ONE: Why are people with disabilities still demanding Civil Rights?

PART ONE: Why are people with disabilities still demanding Civil Rights?

Sen Harkin speaks with Bob Kafka of ADAPT

Five years ago Sen. Tom Harkin from Iowa introduced the Community Integration Act to ensure that Americans with disabilities have the right to live at home with families and are not forced into expensive institutions by the federal Medicaid policy. A year ago the Senate HELP Committee released a report that found that despite the 1999 Olmstead decision that upheld the 1990 Americans with Disabilities Act “integration mandate,” 75% of US states still spent a majority of their long term services and support funding on costly institutional care; segregating people with disabilities in facilities. Tennessee is one of those states.

The rewards for a state are large. The state of Arizona reported to Harkin’s Senate Committee that, since 1998, its “HCBS placement percentage has increased by over 30 percent, which has resulted in $300 million in savings.” Tennessee has had the most to benefit from cost-saving Home and Community based services because in the year following Olmstead, our state reported that 99.5% of Medicaid funding was channelled into facilities. Since Olmstead, Tennessee is one of only 5 states that was able to decrease its Medicaid nursing home expenditures. 

Tennessee has begun to save state and federal funds but is still new to the cost-saving concept of alternatives to expensive institutions. The Nursing Home Industry, with a national lobby and federally supported facilities in every Tennessee county, is good at keeping the government funds flowing into their corporate pockets. 

The money-savings seems to make the case to most people, however it is important to see the civil-rights perspective that disability rights activists have suggested for years and is at the heart of The Community Integration Act. Most Americans easily see segregation as discrimination. It is inconsistent with American values to isolate people because of a disability; to provide people with services only if they leave their home, family, work and community is anathema to our national commitment to civil rights. 

The Memphis Center for Independent Living is working hard to make the choice to live in the community a reality for people with disabilities. Independent Living has been around longer than either the ADA or Olmstead, but supporting inclusion in civic life and community is even more essential now that individuals have realistic options to be part of everyday civic life.

The US Supreme Court’s 1999 Olmstead v. LC decision is the disability rights equivalent of Brown v. Board stating that unnecessary segregation of people with disabilities is a violation of the ADA. Olmstead did not outlaw or close expensive nursing homes but now, 15 years after Olmstead, over 60 percent of Medicaid Long-Term funding is spent on costly institutions and in Tennessee nearly 70 percent of our Medicaid Long-Term money goes to facilities. 

A Medicaid bias in the federal program makes nursing home care a requirement for each US state, while cost-saving Home and Community based services are optional for each state. The Community Integration Act removes this bias and allows US states to provide services that citizens want and need. 

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PART TWO: The case for the Community Integration Act

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.