For many disabled Americans, Medicaid’s home and community-based services, known as HCBS, are vital. They aren’t just another government program; these services often determine whether someone can live on their own or if they’ll need to live in a long-term care facility. That’s why it is disappointing that new federal rules, intended to strengthen these services and anticipated for quite some time, are now delayed.
These new regulations were intended to address some long-standing issues. For instance, millions of people who need services have often found themselves stuck on lengthy waiting lists. The quality of care varies drastically from one state to another, and there is an ongoing shortage of direct care workers.
The government’s “Access Rule” aimed to establish clearer guidelines and foster greater accountability across the board. It sought to ensure states were verifying that individuals actually received the services they were promised, that grievances were handled more effectively, and that a larger portion of the funding reached the direct care providers. However, some crucial elements of that rule are now on hold.
This postponement comes at a particularly interesting time, as the broader discussion around Medicaid is intensifying and becoming quite heated. Robert F. Kennedy Jr., for example, recently discussed how family members now being paid for tasks they once performed for free. He voiced concerns that this system might be susceptible to fraud, suggesting the government lacks the means to confirm the work was actually done.
These kinds of remarks highlight a growing skepticism in some policy discussions regarding how funds are being used. In particular, when it comes to paying family caregivers.
He also implied that families could manage these needs without assistance. But that idea doesn’t quite stand up to scrutiny once you look closely. Families are already the foundation of long-term care in the United States, frequently providing complex support with little to no support. The AARP estimates that family caregivers contribute care valued at over a trillion dollars annually—a staggering amount of help that largely goes unrecognized but keeps the entire system afloat.
And we’re not talking about occasional help. Family caregivers routinely handle complex tasks. This includes things like assisting with bathing, dressing wounds, administering medications, and even managing tube feedings. These tasks require specific skills, and caregivers often perform them without adequate training, pay, or sufficient support.
It’s fairly common for new rules to encounter delays, especially when they are as intricate as those within Medicaid. States often need time to establish new systems, adjust their budgets, and train their staff. Even so, the real-world consequences of these delays cannot be overlooked. When vital protections are postponed, so too are the solutions to the everyday challenges faced by people with disabilities.
For those who depend on HCBS, this simply translates into more uncertainty. Some will continue to wait for services they’ve already been approved for. Others might struggle even more to resolve problems related to insufficient care. And families and caregivers, who already navigate an incredibly complicated system, will not receive the stronger safeguards they were assured.
There’s also a larger, more fundamental issue at play. Lawmakers have increasingly acknowledged the vital importance of supporting home and community-based services—a shift that emerged after many years of advocacy from disability rights champions. Yet, recognizing a problem and actually solving it are two entirely different things. Making these policies truly effective is often a slow process, loaded with technical details, and easily entangled by politics, which is where progress frequently stalls. This delay raises an uncomfortable question for many: just how long should people truly have to wait for these systems to function as they’re intended?
None of this diminishes the importance of the safeguards themselves. They still represent a significant step toward a system that is both fair and more effective. But how well they ultimately work depends entirely on when and how they are put into practice. For now, the promise of stronger protections remains exactly that: a promise.
Sources:
Diament, Michelle. “Long-Awaited Safeguards for Medicaid Home and Community-Based Services Put on Hold.” Disability Scoop, Disability Scoop, 17 Apr. 2026, http://www.disabilityscoop.com/2026/04/17/long-awaited-safeguards-for-medicaid-home-and-community-based-services-put-on-hold/31952/?.
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/.