NCD panel spotlights Florida case and families’ struggles as younger people remain in nursing homes

The National Council on Disability heard public testimony and expert panels in Orlando that framed the continued institutionalization of medically complex youth in nursing homes as the result of state policy barriers, managed‑care shortfalls and long waitlists for home‑and‑community‑based services.

Dana Rogers, a Florida mother, described how her 10‑year‑old son Mayek — diagnosed with tuberous sclerosis complex and multiple, medication‑resistant seizure disorders — lost previously authorized private‑duty nursing hours after a February 2025 recertification. “They turned around and took every single hour we had, said he qualified for no services,” Rogers said, recounting two months with no approved nursing and a later partial restoration to 84 hours per week.

The panel placed Rogers’ experience in a larger legal and administrative context. Lindsay Weinstock, who led the Department of Justice litigation team, reviewed the federal case United States v. Florida, explaining that DOJ’s investigation (begun after complaints in 2011–2013) found state‑imposed barriers to services such as private‑duty nursing, the iBudget waiver and medical foster care. After failed attempts at voluntary compliance, DOJ sued under Title II of the Americans with Disabilities Act; the court ruled for the United States in July 2023 and issued injunctive relief requiring Florida to expand access to critical services for children with medical complexity.

Panelists and counsel outlined the practical drivers that pushed families toward institutional placements: narrow or poorly enforced managed‑care provider networks, reimbursement and contracting practices that made private‑duty nursing scarce or financially unattractive to providers, and waiver waitlists. Paolo (FSU co‑counsel) said, “We have 800 children on the wait list” for Florida’s relevant waiver program; other panelists recalled earlier counts of hundreds of children in facilities when the litigation began.

Medical expert Dr. Mary Ehlenbach told the council that institutional placement was often presented to parents as the only option and that children in nursing homes in Florida routinely received less therapy and developmental support than comparable children living in the community. Matthew Dietz and other lawyers detailed how administrative rules, frequent eligibility reviews and procedural obstacles delayed care and discouraged families from pursuing community options.

Council members asked about costs; witnesses urged that expanding home‑based services need not be dramatically more expensive at the Medicaid‑budget scale and that targeted modifications and stronger enforcement of managed‑care contracts could increase provider access. Panelists recommended including a cost‑comparison analysis in NCD’s report to demonstrate savings and practical benefits of home‑based services.

The session closed with public commenters reiterating calls for full funding of home‑and‑community‑based services, stronger guardian and supported‑decision safeguards, and better coordination among agencies. NCD said the council will incorporate these firsthand accounts and the litigation record into an FY26 report aimed at documenting drivers of institutionalization and proposing reforms.

What’s next: NCD plans follow‑up sessions and will publish a detailed report drawing on the panel’s testimony, case law and data on waiver access, provider networks and programmatic remedies ordered by the court.