RFK Jr. Misunderstands Paid Family Caregiver Programs for Disabled Americans

During a congressional hearing this week, U.S. Department of Health and Human Services Secretary Robert F. Kennedy Jr. criticized home- and community-based services (HCBS), a Medicaid-funded program supporting over seven million disabled Americans. Kennedy specifically targeted programs that allow some family caregivers to receive payment through Medicaid, alleging they are “rife with fraud.” He advocated dismantling these programs in favor of unpaid labor, implicitly shifting caregiving responsibilities to women.

Why Paid Family Caregiver Programs Matter

Most states permit parents of adult children with disabilities, family members of children with disabilities, and relatives of the elderly to be paid for providing attendant care. Kennedy’s proposal would reclassify this support as “natural supports” and unpaid labor, reinforcing traditional gender roles in caregiving.

Calli Ross’s Story: The Human Cost of RFK Jr.’s Proposal

I spoke with Calli Ross, a parent and advocate in Oregon who fought for paid caregiving for her son, Tensy, a child with complex medical needs. Ross explained what RFK Jr. fails to grasp about these programs.

Tensy’s Medical Journey

Tensy, now 11, was born with a genetic condition that increased his susceptibility to illness. At age one, he developed chronic lung disease. At four, he suffered his first cardiac arrest, lasting 33 minutes without oxygen to his brain. Though he recovered with limited mobility, he now requires:

• 24/7 ventilator support for his lungs
• A feeding tube
• Wheelchair use
• Tracheostomy care
• Manual resuscitation during seizures
• Full support for all activities of daily living

In 2024, Tensy experienced a second cardiac arrest caused by a seizure, resulting in the loss of his smile, facial movement, and purposeful physical movement. Despite this, he communicates using an eye-gaze device and lives a full life thanks to home-based support.

Oregon’s Program: A Lifeline for Families

In Oregon, a state assessment determined Tensy requires 744 hours of nursing and attendant care each month—care far beyond typical parenting. Since 2023, Oregon’s Children’s Extraordinary Needs waiver allows parents of high-needs children to work up to 20 hours per week providing these supports. Similar programs exist for adults with disabilities and the elderly, funded jointly by states and the federal government.

Oregon’s program is limited: only 155 children can participate at a time, with a waitlist of thousands. Ross named the bill after her son: Tensy’s Law.

Why These Programs Are Essential

Without paid caregiver programs, families like Ross’s would struggle to provide the intensive support their loved ones need. The workforce to replace these hours simply does not exist. Kennedy’s proposal would force families into unsustainable caregiving roles, disproportionately burdening women.

“These are hours someone else could be paid to work—if the workforce existed. And by someone else, I mean anyone off the street.”