Current Advocacy Initiatives

Chase's Story: A Mother’s Voice

Shannon Crawford, Mother to Chase

My son, Chase, was diagnosed with autism at five years old. He has Level 3, profound autism, is nonspeaking, and will require 24/7 support for the rest of his life. Throughout his childhood, he has received ABA, speech, occupational, and physical therapy. He uses a speech device to communicate his wants and needs, but still requires one-to-one assistance with even simple daily activities.

In Kentucky, Chase waited seven years on the Michelle P. Waiver waiting list before finally receiving services. As he entered puberty, everything changed. He began struggling with self-injury, aggression, and difficult transitions. Our home became a place where we could never fully relax. I constantly had to stay one step ahead, worrying about his safety and ours. I spent countless nights talking with other mothers and searching for a better solution.

By 2025, I knew we could not continue living this way. After learning about another Kentucky mother's experience, I began looking outside our state. With no appropriate residential option in Kentucky that could meet Chase's needs, I made the heartbreaking decision to send him to Heartspring in Wichita, Kansas. He was accepted in January 2026 and now receives the 24/7 care, structure, therapies, and support he needs.

Since moving to Heartspring, Chase has learned skills we had never seen before and is truly thriving. He is happier, more engaged, and living a life that once felt impossible. I continue to fight for him and for families like ours. Kentucky families should not have to send their children hundreds of miles away to receive appropriate care. I want Chase's story to help create meaningful change and better long-term residential options in our state.

If Kentucky had Medicaid eligibility for all children with disabilities—regardless of parental income—Chase’s path would have been very different. Instead of waiting seven years for waiver services and facing months of appeals just to secure out‑of‑state treatment, he could have received medically necessary supports much earlier and much closer to home. Medicaid for all children with disabilities would give families stable, continuous access to therapies, crisis services, and residential treatment, and it would ensure that disability—not income, not custody, and not crisis—determines access to care.

I am his voice, his biggest advocate, and his mother. A mother's love has no boundaries

Frankie’s Story: A Mother’s Voice

Rachel Moldoveanu, RN, Parent & Advocate

As a Kentucky mother raising a child with profound autism, I have learned firsthand that the services families desperately need simply do not exist in our state. My son Frankie was diagnosed at 26 months old, and from that moment forward we did everything we were supposed to do—early intervention, therapy, and securing a Michelle P. Waiver spot without a waitlist. But even with all of that, Kentucky’s system could not meet his needs.

Private insurance limited the therapy hours he was allowed, far below what medical experts recommend. Autism services were treated differently than other medical conditions, leaving us to pay hundreds of thousands of dollars out‑of‑pocket. I left my nursing career because Frankie required constant supervision. Our home had alarms, locks on every door and window, and many nights we slept on the floor outside his room to keep him safe. This is the reality many families live with, even if most are too afraid to say it out loud.

As Frankie grew older, his needs intensified. Despite letters from physicians, schools, and pediatric psychiatry confirming he required residential care, Kentucky had no appropriate programs for children with profound autism. We were told repeatedly that the only way to access residential treatment was to give up custody and place Frankie into foster care. No parent should ever be told that surrendering their child is the only path to medically necessary treatment.

Private insurance does not cover residential autism treatment, and entering residential care would mean losing his waiver and Medicaid eligibility. The cost—up to half a million dollars per year—was impossible for any family to sustain. After months of appeals and hiring an attorney, Frankie was finally approved for a single‑case Medicaid agreement that allowed him to receive care out of state.

Today, he lives 700 miles away in Kansas, where he is finally thriving. He has not had an aggressive episode in six months. He communicates with his AAC device, works in his school, delivers Meals on Wheels, and participates in his community. He is happy, healthy, and safe—because he is receiving specialized supports for profound autism that do not exist in Kentucky.

Frankie’s experience shows how the absence of disability‑based Medicaid eligibility in Kentucky created barriers that should never exist for medically fragile children. Medicaid for all children with disabilities would give families stable, continuous access to therapies and residential treatment, and it would ensure that disability—not income or crisis—determines access to care.

Frankie is not the only child in this situation. Ten Kentucky children are receiving care at the same Kansas program. More than fifty‑six Kentucky children are placed out of state because the services they need are unavailable here. Many of these children are in DCBS custody solely to access Medicaid eligibility. No child should have to enter foster care to receive medically necessary treatment. No family should be forced to choose between custody and care.

We are not asking for special treatment. We are asking for the services our children need to communicate, learn, participate in their communities, and live with dignity. Kentucky needs more providers, shorter waitlists, rural access, stronger coordination between schools and community programs, and real investment in autism services across the Commonwealth. Families need a system that responds with urgency and compassion—not one that leaves us waiting, searching, and fighting for every service.

I will continue to advocate for my son because this battle is far from over. There are no adult residential programs in Kentucky that can meet Frankie’s needs when he grows older. My son deserves a full life of opportunity beyond the walls of a psychiatric ward. And every child with autism and intellectual or developmental disabilities in Kentucky deserves better.

I am my son’s voice. He—and all individuals with Autism and IDD in Kentucky—deserve better.

Reese’s Story: A Mother’s Voice

Mariam Applegate, Mother to Reese

Reese is our 17‑year‑old daughter with profound, Level 3 autism. She requires highly specialized care, constant supervision, and intensive behavioral support. When she reached adolescence, her needs became far more severe. By age 13, she developed significant aggressive and self‑injurious behaviors, and our family began searching for help. What we found instead was a system that had no place for her.

We were repeatedly told that the only way to access residential treatment was to give up our parental rights and place Reese into state custody. We are loving, capable parents seeking medical care—not a foster home—for our daughter. Yet Kentucky’s system offered us no path to appropriate treatment without relinquishing custody. This is not a misunderstanding; it is a structural failure.

Kentucky has very few providers who can safely care for individuals with profound autism and severe behavioral needs. Medicaid coverage means little when no qualified provider exists to deliver the service. When Reese could no longer be safely cared for at home, we discovered there were no appropriate residential treatment options in Kentucky. We had to look out of state.

Reese is now receiving specialized care at Heartspring in Kansas—one of the few programs in the country equipped to treat children like her. She is finally safe, supported, and making progress. But accessing and maintaining Kentucky Medicaid coverage for out‑of‑state care has been extremely difficult. Families should not face barriers when Kentucky lacks an in‑state provider capable of meeting a child’s medical needs.

Reese’s experience shows how different her journey could have been if Medicaid eligibility for children with disabilities were guaranteed, stable, and not tied to parental income. Instead of facing custody threats, limited in‑state options, and a maze of waivers and appeals, she could have accessed medically necessary care much earlier and much closer to home. Medicaid for all children with disabilities would give families stable, continuous access to therapies, crisis supports, and residential treatment, and ensure that disability—not income or crisis—determines access to care.

Even when Medicaid technically covers a service, inadequate reimbursement rates mean providers cannot afford to offer it. This creates a gap between eligibility and actual access. On paper, Reese qualifies for services. In reality, those services do not exist in Kentucky.

During crisis, families like ours are forced to navigate waivers, exceptions, appeals, and out‑of‑state options while trying to keep our children safe. No family should have to become an expert in Medicaid policy just to obtain medically necessary care.

Kentucky needs a continuum of care—from intensive behavioral supports and crisis stabilization to residential treatment and long‑term options. Without it, families reach a breaking point with nowhere appropriate to turn.

For Reese, the central issue has never been eligibility. It has been access. Medicaid only matters if an appropriate provider is available and willing to accept it. When Kentucky cannot provide that care, Medicaid must offer a clear, workable pathway to out‑of‑state treatment.

Our goal is simple: we want Reese to have safe, specialized care—and we want Kentucky to build a system where children with profound autism can receive that care close to home, surrounded by their families and communities.

What Lee Specialty Clinic Is

Lee Specialty Clinic is Kentucky’s only comprehensive medical, dental, behavioral, and therapeutic clinic for adults with intellectual and developmental disabilities (IDD). It provides specialized care that typical healthcare settings are not equipped to deliver.

Families rely on the clinic for:

• Primary medical care

• Dental care with specialized equipment

• Psychiatry and behavioral health

• Occupational, physical, and speech therapy

• Vision, hearing, and nutrition services

• Trauma‑informed, disability‑competent care

For many adults with IDD, Lee Specialty Clinic is the only place where they can safely receive bloodwork, dental cleanings, or routine exams without trauma or sedation. Families travel from across the state because no alternative exists.

What the Council Is Advocating For

The Council on Developmental Disabilities is urging state leadership to:

• Establish permeant funding for the clinic in the budget

• Protect continuity of care for adults with IDD

• Listen to families whose loved ones depend on this care

Lee Specialty Clinic is irreplaceable. Securing permeant funding is the only way to ensure that Kentucky adults with IDD continue receiving the safe, specialized care they deserve.

Press Statement (Board Chair)

“As Board Chair — and as a parent of a child with an intellectual and developmental disability — I cannot overstate the gravity of what the loss of Lee Specialty Clinic means for families across Kentucky. This is not just a service reduction; it is an injustice to a community that already faces some of the greatest barriers to care. Lee Clinic provides specialized, lifesaving support that simply does not exist anywhere else in our state. We stand with the families who are being displaced, and we will continue working to ensure their voices are heard and that Kentucky protects the care this community urgently needs.”

Bill Kenealy