When politicians talk about disability services, it’s not just some political rhetoric. It really affects people’s lives every day. That’s why what the American Network of Community Options and Resources (ANCOR) said about Robert F. Kennedy Jr.’s recent comments is so important. This isn’t just about money. It’s about whether we value disabled people and how we support them in living independently.
Services that let people live at home and in their communities aren’t a luxury. They’re what keep people living on their own instead of being forced into institutions. These services allow people with intellectual and developmental disabilities to stay in their own homes, hold jobs, attend school, and be part of their communities.
On Tuesday, I received a letter from MassHealth saying they’re cutting my PCA hours. I count on my PCA for help with daily things, like showering, getting dressed, and using the bathroom. I was immediately anxious. I need help every day, and my cerebral palsy hasn’t changed.
But somehow, the help I depend on is being cut back. It’s really frustrating when people who don’t even know me are making choices that directly impact my health and well-being. This shows what policy looks like in real life—it’s immediate, it’s personal, and you can’t ignore it.
Robert F. Kennedy Jr argued that families can just step in and cover these needs, but that’s a myth. Families already provide so much care. According to AARP, family caregivers provide over a trillion dollars’ worth of unpaid care a year. Family caregivers do so much. They assist with things like showering, wound care medication administration, and tube feedings.
They also spend hours on the phone with doctors, specialists, and insurance companies. Family caregiving can be rewarding, but it doesn’t mean families can just take on everything else. Many caregivers are already juggling jobs, their own health issues, and other things they need to do.
But instead of building policy around that reality, some proposals frame family involvement primarily as a fraud risk. Robert F. Kennedy Jr. recently said, “These are family members who are getting paid to do things that they used to do as family members for free. And this is rife with fraud, because we have no way at CMS to determine if they actually performed that duty or not.”
That argument overlooks how these programs are actually structured and regulated. Services funded through Centers for Medicare & Medicaid Services—including self-directed care options—operate with care plans, timesheets, fiscal intermediaries, and audit mechanisms. The policy question isn’t whether oversight exists; it’s how to strengthen it without restricting access to essential care.
Equating family-provided care with fraud risk also ignores the workforce reality. The direct care workforce is already facing shortages, high turnover, and low wages. Allowing family members to be paid in certain cases isn’t a loophole—it’s a response to gaps in the workforce and a way to prevent unnecessary institutionalization.
From a policy standpoint, cutting services or limiting who can provide care doesn’t reduce need—it redistributes it. Without adequate Home- and Community-Based Services, costs often shift elsewhere: to emergency rooms, hospitals, or more expensive institutional settings. At the same time, families absorb the financial and physical strain, often at the cost of their own employment and health.
The question isn’t whether families should be involved—they already are. The question is whether policy will recognize that reality and support it responsibly, or continue to underfund services and rely on unpaid labor to hold the system together.
Not every family has the ability to provide full-time care. Just shrinking that responsibility doesn’t fix anything; it just passes the problem on, often leading to financial problems and burnout. And when there are no services, it’s people like me who end up losing our independence.
Plus, the people who work in direct care are already stretched really thin. Direct support professionals do important jobs that make it possible for people to stay in their homes and communities. When you make their job seem less important, it weakens a system that many of us depend on not just to live our lives, but to simply survive.
This isn’t just about someone’s comments. It’s about a broader mindset that sees caring for people as a personal responsibility, not something we all share. That kind of thinking means cuts, less access, and fewer options for people. It forces people away from their homes and into places where they have less freedom, essentially undoing decades of progress.
ANCOR’s response challenges that way of thinking, but they shouldn’t be the only ones doing it. The people making decisions about these services really need to grasp what’s at stake. They should listen to the people these changes directly affect, because the results of these choices aren’t just ideas. It shows up in simple things, like whether someone can get out of bed, get to their job, or just live with some dignity and respect.
Right now, the path we decide to take is really important. We can either back the systems that help people live independently, or we can slowly chip away at them and expect families to handle things they were never supposed to handle by themselves. For those of us who are actually living this, it’s not some abstract idea. It’s happening as we speak.
Sources:
Gonzales, Morgan. “ANCOR Rebuts RFK Jr.’s Remarks on CDPAP, Home- and Community-Based Services.” Home Health Care News, WTWH Media, 15 Apr. 2026, https://homehealthcarenews.com/2026/04/ancor-rebuts-rfk-jr-s-remarks-on-cdpap-home-and-community-based-services/.
Heasley, Shaun. “Family Caregivers Provide over $1 Trillion in Care Annually.” Disability Scoop, Disability Scoop, 13 Apr. 2026, http://www.disabilityscoop.com/2026/04/13/family-caregivers-provide-over-1-trillion-in-care-annually/31942/.