GARY AND MARIANNE MOSLEY, with daughter Emily, on a trip to Yellowstone National Park. Emily has Angelman Syndrome, a neurodevelopmental disorder that causes severe intellectual disability, along with physical disabilities and epilepsy. Her quality of life depends on a Medicaid program the Kentucky Legislature chose not to fund, but Gov. Andy Beshear can restore— as he did by redirecting appropriated funds. (Photo provided by the Mosley family)
By Marianne Mosley
Guest columnist
Kentuckians with intellectual and developmental disabilities (I/DD) recently received very bad news from Gov. Andy Beshear: The Department of Medicaid Services will implement a 4 percent cut in Medicaid provider reimbursements effective Aug. 1.
These types of reductions in Medicaid funding threaten access to essential supports and place vulnerable Kentuckians at risk. The governor said it’s the result of underfunding by the legislature; he said he has to work with the budget he’s been given. I know that is true. And, I appreciate that the choices of what to cut are difficult. But I urge him to find a way to spare Kentuckians with intellectual and developmental disabilities who are already marginalized.
I have a 37-year-old daughter who has Angelman Syndrome, a neurodevelopmental disorder that causes a severe intellectual disability, along with physical disabilities and epilepsy. In other words, she can’t walk, talk or do any personal tasks independently.
She has a wonderful personality — she’s very social and loving and enjoys participating in Lexington Parks & Rec activities for adults with I/DD, as well as going to music therapy, the movies, the mall, parks and (especially) swimming . . . and loves pinching her Uncle Scott (White)!
And like most adults with severe I/DD, she is invisible to most people.
Out of sight, out of mind. In addition to medical services, she receives community living support and personal care services through the Medicaid Home and Community-Based Waiver program (HCBS), which was created more than 25 years ago to support people with disabilities to live in their own communities instead of nursing homes and institutions. HCBS Waivers are included in the 4 percent cut to Medicaid reimbursements.
Her annual budget for these services is $40,000, which is significantly less than the nursing home and institutional care the government would otherwise have to fund.
The reality is that her needs are not going away regardless of Medicaid funding. Nothing on our end changes. Like so many other families with disabled adult children, we worry about what will happen to our daughter — if we can’t care for her. Who is going to change her diaper, feed her or give her seizure medicine to her? She still exists, along with all her complex needs.
And without her parents, she’s the state’s/ taxpayers’ full-time responsibility.
My husband and I are middle class. We are in our 60s. In addition to worrying about whether we will have enough for our retirement, we must plan for our daughter’s care when we are gone.
Our primary goal is to keep her out of a nursing home or institution. We were counting on the Medicaid waiver to help us cover her needs for her lifetime, along with what we have saved and the equity in our home.
All of that is in danger. The governor is our last hope, as unfair as that may be. He can reallocate money. Or, he can call a special session and put the onus back on the legislature. If nothing changes, there will not be a new budget until 2028.
And we families, some in Woodford County, are already working hard, mobilizing to educate legislators about how critical these funds are to our kids, even though we are tired as hell. Some of us will schlep to Frankfort to protest in person. Some of us will be attending Zoom meetings to make our voices heard. We are already writing and calling. And all of it is exhausting . . . because we’ve been fighting for our kids’ rights their whole lives.
Does the “pursuit of happiness” apply to everyone? Even those who need considerable support to make it so?
Gov. Beshear, please find a way to save Home and Community-Based Services from cuts to Medicaid reimbursements. Fight for us so that all Kentucky citizens with disabilities have the chance to live the lives they choose, cared for by their families, who love them, and want to give them the best care and chance for happiness in life that is possible.
Marianne (White) Mosley is a Woodford County High School graduate who now lives in Jessamine County and, along with her husband Gary, is Emily’s caregiver. Marianne retired from Kentucky Education Television (KET) following a long, successful career as a writer and producer. Her brother is Scott White, the Sun’s community liaison and a staff reporter. A different version of this column ran in the Courier-Journal on June 26, 2026.