Current Advocacy Initiatives
Below are the current advocacy issues the Council is presently engaged in. To learn more or how to help, please use the contact button below.
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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.
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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 -
Medicaid should be available to every child with a significant disability, regardless of their parents’ income, and without requiring a waiver slot. This model already exists in 36 states through TEFRA/Katie Beckett and disability‑based eligibility categories.
Under this approach:
A child qualifies for Medicaid because of their disability, not their parents’ income.
Families do not have to quit jobs or reduce income to access medically necessary care.
Children do not wait years on waiver lists to receive basic supports.
Schools, hospitals, and providers can finally deliver the services children are entitled to under federal law.
This is the simplest, most direct way to ensure disabled children in Kentucky receive the care they need.
Why This Matters for Families
Kentucky’s current system leaves thousands of disabled children without care because:
Waiver waitlists are extremely long (10,000+ MPW, 3,000+ SCL).
Medicaid eligibility is tied to parental income, not disability.
EPSDT is inconsistently applied, meaning medically necessary services are often denied.
Families are forced into crisis, ER boarding, or institutional placements because supports are unavailable.
Many parents leave the workforce to qualify for Medicaid, creating financial instability.
Disability‑based Medicaid eligibility fixes these problems by giving children access to:
Crisis stabilization
Intensive behavioral supports
In‑home services
Communication and safety supports
Specialized medical care
Preventive care that avoids long‑term crises
This is the care children need to remain safe, stable, and at home.
Why The Council on Developmental Disabilities Is Advocating for This
The Council is advocating for disability‑based Medicaid eligibility because Kentucky families are in crisis, and the current system is not working.
We hear the same stories over and over:
Parents forced to quit jobs to qualify for Medicaid
Children stuck in ERs for days because no services exist
Families going into debt to pay for medically necessary care
Schools unable to support medically complex students
Children denied services they are legally entitled to receive
Families waiting years for waiver slots that may never come
These are not isolated cases. This is a statewide pattern.
The Council believes:
Children should receive care based on their disability—not their parents’ income.
No child should wait years for medically necessary services.
Families should not have to choose between employment and their child’s health.
Kentucky should align with national best practices already used in most states.
Preventive care is more humane and more cost‑effective than crisis care.
This is a matter of equity, safety, and basic fairness.