04/21/2026
This seems to reflect an unfortunate and widespread misunderstanding about Medicaid waivers, rooted in a lack of awareness of their long history.
These waivers predate COVID-19 and the Biden administration by decades, originating as far back as the era of Ronald Reagan. Their purpose is straightforward but essential: to “waive” the requirement that care must be delivered in an institutional setting and instead allow individuals to receive care in their communities when it is medically appropriate. This approach is not only more cost-effective, but also more humane.
A key component of these waivers in many states is the ability for parents of minors or family members to serve as paid caregivers. This policy exists to address a very real workforce crisis. Direct care roles are chronically understaffed due to low wages, limited benefits, and the demanding nature of the work. Supporting individuals with profound disabilities often involves highly skilled, intimate, and physically and emotionally taxing care. It can also include managing complex medical needs and responding to behavioral challenges that require hands-on support, sometimes at personal risk.
Family caregivers step into this gap not because it is easy, but because they are uniquely qualified. They know their loved ones’ medical histories, medications, therapies, and communication styles in ways that no outside provider can replicate. They bring not only skill, but deep commitment and compassion. While many would provide this care regardless of compensation, doing so comes at significant personal cost. In most cases, caregiving responsibilities make it impossible to maintain outside employment. Without waiver support, the alternative would often require multiple paid staff, increasing costs to the system substantially.
Since their inception, Medicaid waivers have enabled individuals with disabilities to remain integrated within their families and communities rather than being confined to institutions. Paid family caregiving is not only a practical solution to the workforce shortage, it is also a fiscally responsible one. Family caregivers are typically compensated at a fraction of the cost of institutional providers, without benefits or retirement contributions, without SSI work credit, and at the expense of their own long-term financial security.
Efforts to restrict or eliminate these waivers risk causing serious harm. Such actions would disproportionately affect individuals with disabilities and their families, potentially forcing more people into institutional care and exacerbating both human and financial costs.
It is also extremely important to distinguish between legitimate caregiving and fraud. Evidence consistently shows that large-scale fraud occurs primarily at the provider level, not among everyday families. Fraudulent activity often involves organizations or individuals creating sham providers, falsifying diagnoses, billing for nonexistent services, or exploiting system loopholes through coordinated schemes. These operations involve identity theft, fabricated patients, or improper billing practices carried out with little oversight.
By contrast, accessing waiver services as a family is a rigorous and highly regulated process. It requires extensive medical and psychological evaluations, long waitlists, and ongoing assessments, approvals, and monitoring. It is not an easy or quick way to make money. In fact, it is one of the most demanding and scrutinized paths within the system.
Addressing fraud is critical, but solutions should be targeted where the problem actually exists. Strengthening oversight of providers and billing and closing systemic loopholes will be far more effective than restricting access for families who are providing essential, high-quality care.
Medicaid waivers have worked for decades to support vulnerable individuals and promote community-based care. The spike in fraud isn’t the program- it’s that it’s been targeted through lack of oversight. The focus now should be on preserving and improving this system- to protect those it was designed to serve.
https://www.facebook.com/share/r/1F4k4STdJk/?mibextid=wwXIfr
