I am the father of a 24-year-old woman with Down syndrome — a daughter whose courage, joy, and determination guide my work every single day.
I hear stories from families across the country who are desperate for stability and fairness. And I am still struck by the fundamental injustice we face: In America, a person with disabilities can lose essential services, financed by the federal government, just by moving to a new state.
For my daughter and millions like her, Medicaid Home and Community Based Services, or care supports at home, are not optional. They are lifelines. Yet unlike Social Security or Medicare — or a driver’s license, for that matter — these supports do not follow you across state lines. There is no reciprocity, no guaranteed continuity, no safety.
Medicaid Home and Community Based Services allow a person like my daughter to live at home, be in the community or work more independently by providing care supports in a home setting. The alternative would be a facility for long-term care or a nursing home. This program is optional for states, and each state runs its home care programs differently, with its own rules, assessments, provider networks, and waiver systems. That means if people with disabilities or their families need to move — whether to be near family after a parent passes, for a job, or simply for a better climate — they lose the supports they depend on every day and are forced to start again at square one.
Imagine telling any other group that their basic services disappear the moment they step across a border. That’s the reality everyday for the disability community.
Not only do families need to navigate different rules for every state, but they also get put back on a waitlist for services if they move to a new state. In many states, the waitlists for Home and Community Based Services are not months long — they are years long. Some families wait a decade or more.
So when families move from State A to State B, they cannot simply transfer their places in line. They effectively fall off a cliff. Everything they have built up to that point disappears, and they must wait again — often for years — just to regain services they had previously.
This isn’t a policy gap; it is a moral failure that keeps families trapped and often blocks upward mobility.
Across the country, caregivers are aging. Parents like myself are thinking deeply about what happens after we’re gone. My daughter’s siblings love her fiercely and want to support her, but they live in other states.
Under today’s system, relocating my daughter to live near them would mean losing her services, losing her daily routine and support staff and waiting to qualify again, possibly for years.
Families should not have to choose between staying in place until they physically cannot provide care, or uprooting their loved one and throwing them into bureaucratic uncertainty.
This problem doesn’t affect only people with disabilities — it affects the entire family. Parents and siblings routinely turn down promotions, out-of-state job opportunities, or career advancements because moving would jeopardize their loved one’s services.
This drains talent from the workforce. Small businesses lose employees. Large employers lose leadership candidates. Families lose financial stability.
At a time when the nation is discussing workforce participation and economic resilience, portability is not just a disability issue — it’s an economic one.
No group faces greater injustice than military families raising children and adults with disabilities. These families do not choose where they live — our nation chooses for them. Yet when they relocate due to military orders, their child with disabilities is placed at the back of the waitlist in the new state. Over and over again.
It is unacceptable that the very families who serve our country face the steepest penalties in our disability system.
That is why bipartisan members of Congress introduced the Care for Military Kids Act — a critical step to allow military children with disabilities to retain their waitlist time when their families are relocated. It is a smart, targeted demonstration that proves what we’ve been saying for decades: Portability is possible. If we can solve it for military kids, we can solve it for everyone else.
My organization seeks a future where Medicaid benefits, Home and Community Based Services waiver supports, vocational rehabilitation services, functional assessments and certifications and provider qualifications can travel with the person who needs them.
We are talking about ensuring that Americans with disabilities have the same freedom of movement and opportunity as everyone else.
Families move for jobs, for affordability, for safety, for caregiving and for love. People with disabilities deserve that same freedom — without fear of losing the supports that make independent life possible.
My daughter should have the right 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 proposals like the Care for Military Kids Act as a proof of concept, we now have an opportunity — and an obligation — to build a system worthy of the people it serves.
It is time to make Medicaid and Home and Community Based Services benefits truly portable. Because a person with disabilities should never lose essential supports just for moving to a new state.
Rob Taishoff is chairman of the Campaign to Fix the Disability System.
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