The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.
Health and Human Services Secretary Robert F. Kennedy Jr. sparked outrage among disability rights advocates with recent comments alleging widespread fraud in Medicaid programs that pay people to care for elderly or disabled family members — a system millions of Americans rely on to survive.
During testimony before the U.S. House Ways and Means Committee last week, Kennedy criticized Medicaid-funded programs that pay relatives to serve as caregivers, alleging they compensate people for tasks they “used to do as family members for free.” That includes paying them “for balancing the checkbook, for picking up the groceries, for driving somebody to a doctor’s appointment,” he said.
“And this is rife with fraud,” Kennedy said, because the federal government has no way “to determine if they actually performed that duty or not.”
Video of the remarks quickly spread across social media, drawing a wave of angry responses from caregivers and disability rights advocates who said Kennedy trivialized the reality of caring for medically complex loved ones while conflating legitimate caregiving with illegal activity.
“That’s insulting,” said Kim Musheno, senior director of Medicaid policy at The Arc of the United States, a national disability rights organization. “It’s insulting to the families, and it’s insulting to the work that direct support professionals do for people.”
That work, advocates say, is far more complex than shuttling loved ones to doctor appointments.
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More than 11 million Americans are paid through government programs to care for elderly or disabled family members, according to a recent study. Many are reimbursed through a suite of state-administered Medicaid programs known as home- and community-based services, which compensate both family members and professional caregivers to help people live safely at home.
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[C]aregivers say Kennedy’s comments paint with too broad a brush and risk undermining services that millions depend on. Advocates also dispute the claim that there are no checks to ensure family caregivers are legitimate, noting that states typically require training, documentation of care and other oversight.
Medicaid home-care programs are already under strain. More than 600,000 disabled or elderly people are estimated to be on waitlists for services nationwide, and advocates say low pay and difficult working conditions have led to a chronic shortage of home-care workers.
In response to these pressures, which were amplified during the Covid pandemic, many states have expanded programs allowing family members to be paid caregivers — a shift backed by both Republicans and Democrats. In many parts of the country, especially rural areas, families say they cannot find workers with the skills to care for people with complex medical needs.
