Stipends for family care are a lifeline for many families less privileged than Robert F. Kennedy Jr.’s.Mother Jones illustration; Michael Brochstein/ZUMA; Getty
While testifying in support of the Department of Health and Human Services’ budget before Congress this week, HHS Secretary Robert F. Kennedy Jr. attacked home-and community-based services, a Medicaid-backed program that provides over seven million disabled people the support they need to remain out of institutions.
Specifically, Kennedy singled out the fact that some states allow some family caregivers to receive payment through Medicaid, a system Kennedy alleged is “rife with fraud.” Kennedy indicated that he’d like to dismantle those programs in favor of unpaid work, implicitly by women, in the home—already the predominant model for many households, and a far from sustainable one.
I spoke with Calli Ross, a parent and advocate who fought for paid caregiving for minor disabled children in her home state of Oregon, about what RFK Jr. doesn’t understand—or want to know—about these programs.
Most states allow parents of adult children with disabilities, family members of children with disabilities, and family members of the elderly to be paid for providing attendant care.
Robert F. Kennedy Jr. is now saying all of this should be considered “natural supports” and unpaid labor. And the underlying rhetoric is that this labor should be provided by women.
Tensy is my 11-year-old little boy who was born with a genetic condition that makes him more susceptible to illness. At age one, he developed chronic lung disease. At four, he had his first cardiac arrest, going 33 minutes without oxygen to his brain. He recovered fairly well but with limited mobility. He requires 24/7 ventilator support for his lungs, uses a feeding tube, and is a wheelchair user.
In 2024, he had a second cardiac arrest caused by a seizure. This led to the loss of his smile, facial movement, and any purposeful physical movement. He is still able to communicate using an eye gaze device and experiences a full life because he is supported in his home and community.
In Oregon, like other states, a state assessment determined that to live safely at home, Tensy requires 744 hours of nursing and attendant care each month. These supports go far beyond typical parenting. They include tracheostomy care, manually resuscitating him during seizures, and full support for all activities of daily living.
Because Oregon passed the Children’s Extraordinary Needs waiver in 2023, parents of the highest-needs children are allowed to work up to 20 hours per week providing these supports, care that is clearly above and beyond typical parenting. Similar policies exist for adults with disabilities and the elderly, run by states but supplemented by federal matches. The few states that allow parents of minors to be paid are funded under the same principle.
Our program is incredibly small. Only 155 children can participate [at a time], and the waitlist is thousands long. That bill is named for my son: Tensy’s Law.
These are hours someone else could be paid to work—if the workforce existed. And by someone else, I mean anyone off the street who is 18 or older without a felony. But even that low-qualification workforce doesn’t exist. There is a well-documented national caregiver crisis. Many families are being forced to leave the workforce, rely on state aid, or institutionalize their loved ones at a much higher cost to state and federal systems.
As the baby boomer generation ages, the number of family caregivers is rapidly increasing. Without the infrastructure to support this care economy, the system as a whole will fail. We cannot expect women to leave the workforce en masse and provide the care needed for our aging and ill family members. We cannot expect families with children with disabilities to survive on GoFundMe and prayers.
Tensy is one of the 155 in children in Oregon, with a waitlist in the thousands, allowed to choose his dad as his paid caregiver for 20 hours a week. That is the cap, currently, in our state. (Even then, due to administrative delays, my son wasn’t able to benefit from having his dad as his paid caregiver until January.)
It isn’t much, but because of this help, we are able to afford a wheelchair-accessible vehicle. My husband is able to take more time from his job to provide Tensy the care he needs to thrive. As his parents, we are the most knowledgeable and most able to care for our son. But without support, we cannot keep him home. And that’s the reality everywhere.
