Empowering People with Disabilities to Live in Freedom with Dignity
"I am a proud, attractive African American Gentleman. When I was born, God gave me a gift: Cerebral Palsy. This is the story of my life."--Chapter One. Meet the author of these words, and find out what they have to do with Medicaid.
"I am a published author!" was the first thing Tommeall Lee exclaimed as he came in the door to stay for a week of respite services over the Christmas holiday in 2024. Tommeall, (prounced "tuh-mell"), age 54, was born in Mississippi with cerebral palsy, and adopted as a young child by a family in Paducah to be a baby brother to six older siblings. By the time he was 26, both of his parents had passed away. He currently lives with a foster family in Calloway County, relying on a special Medicaid program called Supports for Community Living (SCL). That program serves those with intellectual or other developmental disabilities to help them live in the community as independently as possible.
Supports for Community Living is called a Medicaid waiver program because it relies on Kentucky receiving a special waiver from the federal Medicaid program to provide specific services to those with special healthcare needs-- such as those in the SCL program. Currently there is a waiting list for SCL services and supports.
Medicaid waiver programs are funded through a combination of federal and state resources, with the federal government providing a significant portion. Because residents of Kentucky have a lower per capita income, for 2025 the federal government covers 71.48% of the costs of Medicaid services in the state, including waiver services. The state contributes the remaining 28.52%. The only states with a higher rate of federal contribution than Kentucky are Alabama, Mississippi, New Mexico, and West Virginia. See Federal Register. This rate is adjusted annually by the Centers for Medicare and Medicaid (CMS).
Many readers may think of Medicaid only in terms of doctor and hospital visits, or long-term care in nursing homes. Many are unaware of the reliance on Medicaid for support for most people in nursing homes, and may even be unclear of the differences between Medicare and Medicaid, or the financial requirements for eligibility for Medicaid when they realize they need this coverage.
Waiver services such as Supports for Community Living (SCL) provide a variety of services to help individuals function in the community and reduce the need for even more expensive institutional care. They may include vehicle assistance, personal support, respite, and managing challenging behaviors. The Michelle P. Waiver is in such demand that the waiting list, while varying, is many-years-long.
As reported in a 2024 Kentucky Lantern article ". . . at the current rate, it would take 168 years to serve the more than 8,000 people waiting for the program known as 'Michelle P.,' which pays for day programs, supported employment and other activities." This article also describes how Michelle P. was initially created in response to a lawsuit due to waiting lists for the traditional Home and Community Based waiver, HCB, of which Michelle P. and SCL are a sub-category in regulations. Now young children with severe disabilities, including autism, often must wait many years and miss some interventions that are most effective in the critical early years of brain development. The legislature did approve more slots in the 2024 two-year budget plan, but wait lists remain huge . For a national perspective, see also A Look at Waiting Lists for Home and Community Based Services from The Kaiser Family Foundation (KFF) which describes itself as "The independent source for health policy research, polling, and news."
It takes very special families to be providers. They must have the ability to provide this care, typically to one or two SCL participants, and no more than three per residence. It requires a local Adult Foster Care provider agency and Medicaid state supervisory and regulatory structure to ensure that individuals receive not just safe and adequate care, with careful monitoring and record-keeping of things such as medication, health, and behavior--but also care that enhances each person's freedom and dignity.
The first thing Tommeall said when asked why he appreciated being in the Adult Foster Care program was "It helps you be free and stuff." He also stated, "It's nice. You meet interesting people and stuff. You go different places. They're like my family." Tommeall also loves his foster family's three dogs. In some homes, an individual may own and help care for their own pet.
Tommeall attended day programs at Easter Seals West Kentucky for many years, again with Medicaid providing substantial funding support. During that time, he worked at Goodwill in Paducah part-time for more than 20 years, being selected as "Employee of the Year" three times. The SCL Waiver's Supported Employment component helped provide job coaching and support to help him be successful at his job at Goodwill.
As Tommeall reached his 50s, however, his physical limitations due to cerebral palsy worsened, and he had several falls. After neck surgery, and a short stay in a long-term care facility for rehabilitation--also covered by a combination of Medicare and Medicaid--Tommeall could no longer work safely at Goodwill because of his fall risk. Also, he needed a new Foster Care provider, and moved to Calloway County.
Tommeall's pride in being a "published author" resulted from this move. Tommeall transferred to the Murray W.A.T.C.H. program for individuals with intellectual/developmental disabilities. It also relies on Medicaid funding and Tommeall's services there are billed through the SCL program as Adult Day Training. Medicaid also pays for the Fulton Co. Transit bus that transports Medicaid recipients to W.A.T.C.H., as it can for any Medicaid recipient needing transportation to medical appointments.
Tommeall stated that he loves the big physical space at W.A.T.C.H. because "you can walk around without people asking you where you're going." He also stated, "It feels good to me. It makes me happy to meet more people."
One person he met there is Jen Jeffrey Billington. Jen is an author who volunteers at W.A.T.C.H., teaching a writing and creativity class.
Tommeall showed Jen his laptop with his personal stories he had been writing since around 1999, planning a book about how he has overcome obstacles in his life--and about his love of basketball. Jen immediately knew, as she states in the book, ". ..he needed to be published." She set to work to help him. Last fall, Faith Words Publishing made that a reality, under the title "No Ordinary Guy," by Andre W. Graham (Tommeall's birth name). The 85-page paperback, which was lightly edited by Billington, is available for purchase on Amazon.
This is "No Ordinary Guy," a book that whoever reads this will not put down. The Bible says that without faith, it is impossible to please God. I am, without a shadow of a doubt, a man of great faith. God helped me through life, that is all I know. . . .Life is one big obstacle course, it is very challenging."
Now with a new Congress and budget plans, Medicaid is on the chopping block. The Kaiser Family Foundation (KFF) performs non-partisan healthcare policy analysis. They have studied the various cost-cutting proposals and analyzed proposed reforms. It is critical for the public to understand this point from their report (Oct. 29, 2024):
"Notably, over half of Medicaid spending is for enrollees who qualify on the basis of age or disability. These enrollees typically use long-term services and supports that are not covered by Medicare or private insurance, and extremely expensive to obtain paying out of pocket."
The Georgetown University McCourt School of Public Policy reports (Jan 20th, 2025): "On Friday, January 17, Politico and other news outlets reported that the House Budget Committee distributed to the House Republican Caucus a new 50-page list of mandatory spending and tax proposals that may be included in budget reconciliation legislation. The new list includes not only the draconian Medicaid cuts of up to $2.3 trillion over ten years that were proposed in a one-page document circulated one week earlier by Representative Jodey Arrington (R-TX), the chair of the House Budget Commitee, but also includes a number of additional damaging Medicaid cuts." Link:
The "per capita caps" being proposed are a form of block grant that do not decrease costs but rather shift costs to the states as noted by the Kaiser Family Foundation (see link above). As they state:
"These approaches for restricting federal Medicaid spending would not result in lower overall costs, but instead would shift costs to states. States would have to make tough choices about whether to reduce coverage, services, and provider rates in Medicaid, or whether to raise revenues or cut other state spending."
Residential care services and disability services in general are extremely expensive. How are we going to ensure that those who need these services can remain healthy, free, and living with dignity? The large costs in Adult Foster Care are almost all going to the direct service provider families and to pay staff of the agencies that supervise them--to make sure Tommeall has appropriate care, and yes, is able to attend church services when he wants to. "Government fat" is an imaginary but politically useful target for politicians to use as a platform for their campaigns and to keep their jobs. This article, The Truth About Medicaid Fraud, also from the Georgetown University McCourt School of Public Policy, addresses those political talking points and is included in this edition of the West Ky Journal.
Another KFF policy paper states: "Like the Terminator, the idea of a Medicaid block grant keeps coming back. But the program and its politics have gradually changed. Medicaid is now a much larger and more popular program, touching a wide cross-section of American society." However, unless the Congress hears from that "wide cross-section of American society" loudly and clearly that we cannot sacrifice our disabled and elderly citizens' well-being and freedom, they could easily move quickly to impose drastic cuts. Those cuts will hurt millions of people--when in reality we need to find ways to improve funding to reduce or eliminate harmful waiting lists.
The West Ky Journal has a new article with information on contacting your legislators about both state and federal legislation. You can access information here to help you contact federal legislators in both the House and Senate who are now debating these drastic cuts. As a Kentuckian, you might also contact Rep. Brett Guthrie mentioned above, chair of the committee that has jurisdiction over Medicaid. Link: Your Voice Matters: Contacting Your Elected Officials. You may also visit The ARC: Action Center where you can find easy links for actions: share a story of what Medicaid means to you, tell Congress that Medicaid is a lifeline for people with disabilities, or tell Congress to raise the SSI asset limit, which affects who can qualify for Medicaid.
Our society must ensure that he and all our vulnerable members of society keep that freedom and dignity.
"The love of liberty is a common blood that flows in our American veins"--President Jimmy Carter, Farewell Speech, 1981
(Disclosure: author's spouse is George Kennedy, owner of Kennedy Individualized Community Services, an Adult Foster Care agency which contracts with Kentucky Medicaid).
Author is retired after a 40+ year career as a speech-language therapist in a variety of educational and healthcare settings. During 30 years in home health, long term care, and hospital outpatient settings, the vast majority of her patients relied on Medicaid. She retired in 2019 after 11 years at Jackson Purchase Medical Center, Rehabilitation Services Dept. She and her spouse have provided Adult Foster Care in their home to an individual since 2009. Leslie enjoys raised bed organic gardening, walking her Border Collie, Molly, teaching herself hammered dulcimer, and enjoying rural life in their passive and active solar home built by the late Sonny Ridgeway of Paducah in Graves Co. You can find Leslie on BlueSky as LeslieinKY, @lesinky.bsky.social