Rachel de Leon/Mother Jones
In late April, podcasters Audrey Presby and Jeremy Fraser decided to venture out of their studio in California to head to Washington, DC. It was not the most joyous occasion: Presby and Fraser, both of whom have Down syndrome, were there to plead with House representatives not to vote to pass the sweeping health care funding cuts in President Donald Trump’s so-called One Big Beautiful Bill (OBBB).
“A lot of people are going to feel terrified, petrified, scared of what’s going to happen next,” Presby said in a viral clip of the podcast. Much to the fear of the disabled and low-income people who rely on it, Congress voted to pass the OBBB in early July, which will lead to around $1 trillion in Medicaid cuts over the course of the next decade.
Presby and Fraser, who are in a relationship, both receive support through home and community-based services waivers (HCBS), an amendment to the Social Security Act enacted under the Reagan administration to give qualifying disabled people on Medicaid resources to live outside institutional settings like nursing homes. States have separate programs, and the overall system is not perfect—some people have to remain on waitlists for more than a decade to get a waiver, which can feel like a golden ticket.
States making brutal decisions about how to implement overall Medicaid funding cuts—which services to reduce or eliminate—will likely look to optional programs like HCBS. But that would mean long-term costs, rather than savings: A recent report from the California Health Care Foundation found that a 10 percent cut to HCBS programs would lead to $1 billion more in Medicaid spending in the state that Fraser and Presby call home due to the greater overall costs of institutionalization.
People like Presby and Fraser, said Kristianna Moralls of the Self-Determination Institute, “are able to use these Medicaid funds for helpers who teach cooking and cleaning, money management, so they can live more independently and be part of their community.”
Reveal’s Rachel de Leon, a new mom to a baby boy with Down syndrome, relies on federal funding to pay for the critical therapy services her son receives to meet milestones like sitting up independently and crawling. She spent the day with Presby and Fraser to see how they apply their Medicaid waivers to activities that teach critical skills that extend beyond the traditional models of physical or occupational therapy.
Fraser goes surfing to help with his core strength—people with Down syndrome can have low muscle tone—which also helps his mental health. He hires a surfing coach as a very part-time member of his support staff—subsidized by Medicaid and much less expensive than a physical therapy session.
“We see better outcomes, not only for the individuals, but for the people that work with them,” Moralls said. “It brings jobs to lots of people, and it also just builds a structure that we really want. This is the America we want to live in.”
