The Human Cost of ‘Natural Supports’: RFK Jr. Targets Medicaid Home Care Programs
WASHINGTON — In a move that has sent shockwaves through the disability rights community, HHS Secretary Robert F. Kennedy Jr. has launched a direct assault on the lifeline that keeps millions of Americans out of state institutions.
While testifying before Congress regarding the Department of Health and Human Services budget, Kennedy targeted Medicaid-backed home- and community-based services, a system currently supporting over seven million people with disabilities.
Specifically, Kennedy singled out the practice of some states paying family caregivers via Medicaid, claiming the system is “rife with fraud.”
The Secretary’s proposal suggests dismantling these paid programs in favor of “natural supports”—a euphemism for unpaid labor that historically falls on the shoulders of women.
But for families like Calli Ross and her son Tensy, this is not a matter of budgetary efficiency; it is a matter of survival.
Beyond ‘Typical Parenting’: The Reality of Extraordinary Care
Tensy is an 11-year-old boy born with a genetic condition that left him vulnerable to severe illness. His journey has been marked by unimaginable trauma, including two cardiac arrests—the first of which deprived his brain of oxygen for 33 minutes.
Today, Tensy lives a full life, communicating through an eye-gaze device. However, that life is made possible only by a grueling, 24/7 care regimen that includes ventilator support, a feeding tube, and constant monitoring.
In Oregon, a professional assessment determined that Tensy requires 744 hours of nursing and attendant care every single month to remain safely at home.
This level of care involves tracheostomy management and manual resuscitation during seizures—tasks that far exceed the boundaries of traditional parenting.
Thanks to the passage of the Children’s Extraordinary Needs waiver in 2023, Oregon now allows parents of the highest-needs children to be paid for up to 20 hours of this specialized work per week.
This legislation, which was named for my son, Tensy’s Law, provides a modest but vital financial bridge for families in crisis.
Currently, only 155 children in Oregon can benefit from the program, while thousands more languish on a waitlist.
Do we truly believe that the solution to a caregiver shortage is to simply demand that parents work for free?
Would we accept a system where the most vulnerable among us are forced into institutions simply because their families cannot afford to stop earning a paycheck?
For the Ross family, the payment allows Tensy’s father to reduce his professional hours and provide the expert care Tensy requires. It also enabled the purchase of a wheelchair-accessible vehicle, ensuring Tensy isn’t trapped within four walls.
The Care Economy: A System on the Brink
The conflict over Medicaid home care programs highlights a deeper, systemic failure in the American care economy. The “natural supports” Kennedy advocates for are often a veil for unpaid labor that disproportionately impacts women and marginalized groups.
The United States is currently facing a documented national caregiver crisis. There is a profound shortage of professional home health aides, leaving a vacuum that families are forced to fill.
When the state refuses to fund this labor, the result is a cascade of economic failures: parents leave the workforce, household poverty increases, and the state eventually pays more to house the individual in a long-term care facility.
As the baby boomer generation ages, this pressure will only intensify. The demand for home-based attendant care is skyrocketing, yet the infrastructure to support it remains fragile.
The Centers for Medicare & Medicaid Services (CMS) has long recognized that HCBS is not only more preferred by patients but is often more cost-effective than institutionalization.
Expecting families to survive on “GoFundMe and prayers” is not a sustainable fiscal policy; it is a recipe for systemic collapse.
For Tensy and the thousands on the waitlist, the fight for paid caregiving is a fight for the right to exist in their own communities.
The reality is simple: without financial support, the option to keep a child with extraordinary needs at home becomes a luxury that only the wealthy can afford.
Frequently Asked Questions About Medicaid Home Care
- What are Medicaid home care programs? These are services designed to provide the necessary support—such as nursing or personal care—to allow disabled individuals to live at home rather than in a nursing home.
- Can family members be paid through Medicaid home care programs? In many states, yes. Policies vary, but some allow family caregivers to be reimbursed for specialized care that goes beyond typical family duties.
- Why are some calling Medicaid home care programs “fraudulent”? Some critics, including RFK Jr., argue that paying family members is prone to abuse, though advocates argue these payments are essential due to the lack of professional caregivers.
- What is the “caregiver crisis” in the context of Medicaid home care programs? It refers to the severe shortage of professional home health workers, which forces families to provide high-intensity medical care themselves.
- What is the alternative to Medicaid home care programs? The primary alternative is institutionalization in skilled nursing facilities, which is generally more expensive for the government and less desirable for the patient.
Join the Conversation: Should family caregivers be compensated for medical-grade care, or should this be considered a “natural” family responsibility? Share this article and let us know your thoughts in the comments below.
Disclaimer: This article discusses government policy and healthcare funding. It is provided for informational purposes and does not constitute legal or financial advice.
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