Kim Thompson worries what will happen when she can no longer be there for her son, Forest Thompson-Bell. (Photo provided)

Kim Thompson is happy her adult son, who is intellectually disabled, lives with her.

“I want him at home,” the Louisville woman said of her son, Forest Thompson-Bell, 27. “I want to be very clear about that.”

But Thompson, 54, is among thousands of Kentucky parents or other caregivers who worry about what will happen when they die or become unable to care for disabled adult children because of age or infirmity.

“It’s a constant worry,” Thompson said. “As we all age, we tend to think about what’s going to happen when we are no longer capable of working or supporting them.”

Now, Thompson and other advocates are joining a fight to end long wait lists for help through Kentucky Medicaid for programs that provide activities, personal care, daily living assistance, and, when needed, residential care in a supervised setting such as a group home.

Their goal: convince the Kentucky General Assembly to fully fund such programs over the next eight years and eliminate the wait list that now numbers nearly 13,000 individuals, some who face decades waiting for aid.

For example, 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.

“These are people with disabilities who deserve to have these services and the state is not making them available to them,” said longtime human needs advocate Sheila Schuster.

The programs currently serve about 33,000 people and openings are rare, usually occurring when a client dies.

To start cutting the wait lists, the proposal’s price tag for the next two budget years alone is $211 million — $60 million in state money and the rest from the federal government which provides about 70% of the funding, according to projections worked out by advocates.

That would add 3,180 new slots over the next two years, with more slots contemplated in every biennial budget through 2032.

Schuster acknowledges it could be a “big fight” for that amount of money in the current legislative session where lawmakers will adopt the state’s next two-year budget.

But with the state sitting on a record budget surplus of $3.7 billion, Schuster said she and a group called Advocates for Reforming Medicaid Services, or ARMS, believe it’s time to start.

“We do have the money if we’re willing to spend it,” said Schuster, executive director of the group Advocacy Action Network.?

Parents afraid to die

Currently, 12,723 people are on wait lists for six state Medicaid programs, known as “waivers,” that provide special services for individuals with intellectual, physical or developmental disabilities, brain injuries or other limitations.

The longest: 8,398 are waiting for a slot in the “Michelle P. waiver,” named for a young woman who served as the lead plaintiff in a federal lawsuit that successfully led Kentucky in 2008 to expand such Medicaid services.

Mary Hass, an advocate for individuals with brain injuries, said older parents are afraid of dying without a plan to care for disabled children.

She recently spoke with one mother, 92, whose daughter, in her 50s, is on a wait list for help. Another parent’s young adult son will be in his 90s before he’s eligible for help, based on the current wait list, said Hass, chair of the Brain Injury Association of America-Kentucky chapter.

“None of us is going to live forever,” Hass said.

The ARMS group has found an ally in state Sen. Whitney Westerfield, a Christian County Republican, who adopted its proposal in his Senate Bill 34, a sweeping measure to provide more services to help families, especially with young children.

Westerfield said he included the ARMS proposal after learning about the lengthy wait lists for individuals with disabilities.

“I had no idea until about a year ago that we had waiting lists that were many, many, many years long,” he said. “That’s unconscionable that there are Kentuckians who need this help, deserve this help and who are eligible for this help that aren’t getting it for most of their lives or all of their lives.”

And Gov. Andy Beshear, a Democrat, announced last month he is including 750 new slots to reduce the wait list in his two-year budget proposal to the General Assembly — a significant increase over the 50 or so slots per year the state has added in recent budgets.

Advocates said Beshear’s plan is a start but much more is needed to make a meaningful dent in the lengthy wait lists.

And with a Republican supermajority in control of both chambers, it’s unclear how much legislative leaders are willing to commit even as they try to limit spending to allow for a third cut in the state income tax in future years to eventually eliminate Kentucky’s income tax.

Schuster said advocates are preparing to make their case to lawmakers.

“I’m going to say we have a fighting chance,” she said. “We know they have the money.”

‘What’s the plan?’

Advocates also say they are seeking better management of the wait lists spread among six different programs.

They acknowledge there likely is some duplication among the 12,723 people now waiting for slots in the various programs administered by the Cabinet for Health and Family Services.

Some families sign up for several waiting lists in hopes of getting services through one.

For example, they may sign up for the Michelle P. program which pays for services in the community, such as adult day centers or supported employment.

Meanwhile, they sign up for a separate program known as Supports for Community Living which pays for full-time residential living in a small group home or assistance in the individual’s home.

And some may already be getting help through the Michelle P. waiver while waiting for the residential program.

“There are people in that waiver whose needs are being met,” said Steve Shannon, a mental health advocate and member of the ARMS coalition. “However, they are living with aging parents who at some point can no longer provide the support. What’s the plan at that point?”

“Most folks would feel better knowing they have an option,” added Shannon, who represents Kentucky’s community mental health centers.

Advocates say lawmakers question the accuracy of the wait list numbers because of potential duplication and they agree the state needs a better system of keeping track.

“I think we have to do a better job of waiting list management,” Shannon said.

‘Why can’t Kentucky keep up?’

In Louisville, Forest Thompson-Bell leads a busy life, said his mother, Kim Thompson.

With financial help from the Michele P. waiver he attends a day program. He’s learning job and life skills.?

He’s in a choir for individuals with disabilities and participates in Special Olympics, where he excels in competitive cheerleading, his mother said.

He’s also enrolled in a performing arts program where he’s learning the basics of theater, playwriting, acting and directing.

“He’s quite busy,” Thompson said.

Thompson said she’s grateful to have a flexible schedule that allows her to get her son to all his activities and medical appointments as well as advocate for her son and others with special needs.

But Thompson said her ongoing concern is what happens when she can’t do that anymore.

An assurance Forest has a slot in the program that covers residential care would ease that concern for her and many other parents, Thompson said.

“Ideally, I would like the waiting list to end today,” she said. “As an advocate, I would say we really do need to look at how this got backlogged in the first place. Why can’t Kentucky keep up?”