We Cannot Go Back

History has a strange way of looping back on itself. In 1965, Robert Kennedy Sr. visited the Willowbrook State School and called it a “snake pit.” He saw children living in filth and rags, and his outrage helped spark a revolution. It led us away from the dark halls of institutions and toward the light of the community.Fast forward to last week. His son, HHS Secretary Robert F. Kennedy Jr., stood before Congress and took issue with Medicaid paying family caregivers.

He called these programs “rife with fraud,” suggesting that family members are getting paid for things they “used to do for free,” like driving a loved one to the doctor or picking up groceries.

As an advocate who has spent my life navigating the space between policy and reality, I have one thing to say: Independence isn’t free, and it isn’t fraud.Home and Community-Based Services (HCBS) are not a luxury. They are the vital lifeline that allows 8.4 million Americans with disabilities to live in their own homes rather than the institutions the senior Kennedy once decried.

When Secretary Kennedy suggests that families should just do this work “for free,” he is ignoring the economic reality of 2026. Providing care is a full-time job. When a family member becomes a caregiver, they often have to leave the traditional workforce.Being

Being paid through a Medicaid waiver isn’t a “get rich quick” scheme; it’s what keeps that family out of poverty.We are in the middle of a massive shortage of direct care workers. Often, a family member is the only person available to do the job.If these family-led supports are cut, where do people go? Back to nursing homes and institutions.Those facilities cost taxpayers far more than HCBS and, as history has shown us, they often rob us of our dignity.

In my book, Beyond What You See, I wrote that “Life begins beyond what you see.” What the Secretary sees as “balancing a checkbook” is actually the maintenance of a human life.Disability doesn’t have a political party. It doesn’t care about your skin color. As I’ve said before, disability is America. We are an example of hope and endurance, but that endurance is tested when the people in charge of our healthcare look at our support systems as “waste, fraud, and abuse” rather than “justice, dignity, and freedom.The

The current administration and the disability community cannot be enemies. We must be allies. To Secretary Kennedy, I say this: Do not let the legacy of Willowbrook be forgotten. Do not dismantle the very systems that allow us to reach for the stars—not because it’s easy, but because it’s hard, and because it is the right thing to do.America is made great when we learn from our past. Let’s not repeat the mistake of undervaluing the lives of the disabled.

sources:

https://abc7ny.com/post/geraldo-rivera-reflects-willowbrook-investigation-54-years-later/18943658/

RFK Jr. Takes Issue With Medicaid Paying Family Caregivers

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