Why Should My Daughter Lose Home Care Just for Crossing a State Line? The Case for Portable Medicaid Supports

I am the father of a 24-year-old woman with Down syndrome — a daughter whose courage, joy and determination shape my work every day. What troubles me most is a simple injustice: in the United States, someone with a disability can lose federally funded, essential home care simply by relocating to another state.

A Lifeline That Stops at the Border

For my daughter and millions like her, Medicaid Home and Community-Based Services (HCBS) are not optional — they are lifelines that allow people to live at home, participate in their communities and work more independently. Unlike Social Security, Medicare or even a driver’s license, these services rarely transfer across state lines: there is no guaranteed reciprocity and no continuity when families move.

The HCBS program is optional for states and each state runs its own waiver systems, eligibility assessments, provider networks and rules. That means families who relocate — to be closer to relatives after a parent dies, for a job, or for a safer climate — often lose supports they already had and must start the process over.

When a family moves from State A to State B, their place in line usually does not move with them. They fall off a cliff and often wait years to regain previously secured services.

Real Consequences For Families And The Economy

Waitlists for HCBS in many states are not measured in months but in years; some families wait a decade or more. That uncertainty traps families in place, forces them to decline job opportunities and limits workforce mobility. Small businesses lose employees, large employers lose leadership candidates, and families lose financial stability.

This is not only a policy gap — it is a moral failure that undermines upward mobility and harms the broader economy.

Military Families Deserve Better — And So Do All Families

No group faces a greater unfairness than military families, who do not choose where they live. When military families relocate under orders, their child with a disability is frequently placed at the back of the new state's waitlist. The bipartisan Care for Military Kids Act would allow military children with disabilities to retain their waitlist time when their families move — a targeted, practical proof of concept that shows portability is achievable.

A Path Forward

My organization advocates for a system in which Medicaid benefits, HCBS waiver supports, vocational rehabilitation services, functional assessments and provider qualifications can travel with the person who needs them. That would ensure the same freedom of movement and opportunity enjoyed by other Americans.

Families move for jobs, affordability, safety, caregiving and love. People with disabilities deserve that same freedom — without fear of losing the supports that make independent life possible. My daughter should be free to choose where she lives, work where she wants and be cared for by the people she loves. No state line should stand in the way.

With bipartisan steps such as the Care for Military Kids Act demonstrating feasibility, Congress has an opportunity — and an obligation — to make Medicaid and HCBS truly portable. A person with a disability should never lose essential supports simply because they moved to a new state.

Rob Taishoff
Chairman, Campaign to Fix the Disability System

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