For families like mine, Medicaid isn’t just health insurance. It’s what keeps our daughter home with us.
My 11-year-old daughter, Angelina, has profound autism, intellectual disability, severe speech delay, asthma, incontinence, and other health issues. She needs round-the-clock care, which we lovingly provide at home — we dress her, feed her, change her diaper, and watch her constantly to keep her safe.
While I work outside the home, her father and stepbrother receive pay from Medicaid’s Home and Community Based Services (HCBS) program (called In-Home Supportive Services, or IHSS, in California, where we live).
Family caregivers provide essential, often highly skilled care, but that work is frequently overlooked or treated as something families should provide without compensation. Programs like HCBS recognize that caregiving is real work and provide families with some financial stability while they meet their loved one’s complex needs. This also saves taxpayer money by keeping care at home and out of costly institutions.
Decades of research show that children do much better with appropriate care at home than with institutionalization. But if we lose Angelina’s Medicaid coverage, she’ll have to be institutionalized.
That’s our worry as Medicaid cuts from last year’s so-called “Big Beautiful Bill” go into effect after this year’s midterms. HCBS will also be at risk for cuts or elimination itself as state budgets are squeezed by the cuts.
The law cuts nearly $1 trillion from Medicaid over the next decade, with the Congressional Budget Office estimating that at least 10 million people will lose their health coverage as a result. It also restructured lower reimbursement payments to Medicaid providers and added strict work requirements and bureaucratic barriers to eligibility.
These cuts were made in order to slash taxes for the wealthy and ramp up spending on mass deportations and wars like the one in Iran. I’ve built our lives around providing care to our child, but the federal government is now dismantling the already under-funded supports that make this possible.
That’s not all that parents of kids with disabilities need to worry about.
This summer, the Department of Justice published a memo challenging the decades-long interpretation of the United States Supreme Court decision in Olmstead v L.C. as well as Section II of the Americans with Disabilities Act, which both protect people with profound disabilities from institutionalization.
At the same time, the Department of Health and Human Services has announced the Office of Special Education will be absorbed into their department. This office provides critical services to families like mine. But it will now answer to Health Secretary Robert F. Kennedy, Jr., who’s promoted false information about children with autism.
The Office of Civil Rights in the Department of Education ensures children with disabilities receive equal opportunities in public education. But the administration has said this office will be subsumed under the Department of Justice — the very federal department that issued the legal memo opposing the rights for certain people with disabilities to be cared for at home.
It seems we are moving to a system that will attack rather than support children and other people with disabilities. At a moment when the federal government is deciding who deserves public resources, it is telling families like mine to accept less while pouring extraordinary resources into ICE, wars, and tax cuts for the wealthy.
I’m not asking for special treatment for my child. I’m asking that she be allowed the same rights and opportunities that children without disabilities enjoy. That is the promise of America. That is the hard-fought victory that the Americans with Disabilities Act and the Olmstead v L.C. decision brought us decades ago.
This means protecting Medicaid, Home and Community Based Services, the offices of Special Education and Civil Rights, and a strong federal commitment to the policies that protect children with disabilities. This is about protecting everyone’s opportunity to live with dignity, whatever the challenges life throws our way.
