The term waiver can be confusing, especially in contexts like Medicaid waivers, where it doesn’t mean what many people assume. Let’s take a closer look at what it really means—and why this understanding matters deeply for families of disabled individuals.
In Medicaid, the most common type of waiver is the Home and Community-Based Services (HCBS) waiver. This term originates from the federal government waiving the rules that would otherwise require Medicaid to cover long-term care only in institutional settings. By granting an HCBS waiver, the Centers for Medicare and Medicaid Services (CMS) allows states to use Medicaid funds to provide care in home and community settings instead of institutions.
When an individual accepts a waiver, they are essentially agreeing to this arrangement: I am giving up my right to institutional care and will instead receive care in my home and community. This trade-off should be a win-win for both the individual and the government. The individual gets to stay in familiar environments while receiving the support they need. The government gets to save money because home and community care is typically far less costly than institutional care. However, this agreement depends on the availability of real, functional home and community care.
The Problem for Family Caregivers
Understanding that a waiver “waives” the requirement for institutional care is crucial for family caregivers. When we push for paid family caregiver policies, we’re not asking for a costly “new program.” We are advocating for policies that make it possible for states to fulfill their side of the bargain—providing the home and community-based services they promised to individuals with waivers.
Our loved ones go through a stringent evaluation process and are judged by the state to need an institutional level of care. By accepting a waiver, we waived our right to institutional care and the state agrees to provide care at home and in the community instead.
The Loophole
Here’s the problem: many states have created a loophole that undermines the promise of Medicaid waivers. By banning family caregivers or making the care provider job so unattractive that few workers remain in the field, states effectively issue waivers to eligible individuals without ever having to pay for care—whether in an institution, at home, or in the community. If providers are unavailable due to bans or poor working conditions, states avoid their financial obligations entirely.
This leaves families scrambling to fill the gap, providing care themselves without compensation while the state sidesteps its responsibilities. The waiver, which was meant to be a lifeline, becomes little more than an empty promise.
For example, anti-family caregiver lobbyists in Ohio once claimed they could save county boards of developmental disabilities $74.4 million by banning family caregivers from providing authorized care to their disabled children. Their reasoning appears to be simple: when authorized care hours go unfilled, the state looks like it is fulfilling its obligations under the waiver, but it doesn’t actually pay for any care. This loophole allows states to claim they are helping people with disabilities while leaving families unsupported and overwhelmed.
Why Legislators Must Pay Attention
Legislators need to understand that removing bas on paid family caregiver policies isn’t a “new program.” It’s a necessary fix to ensure the existing waiver system works as intended. Without such policies, the state fails to deliver on its commitment to provide home and community-based care as an alternative to institutionalization.
Family caregivers are the backbone of the system. When policies support them, states can meet their waiver obligations, individuals can thrive in their communities, and Medicaid funds are used as intended. When family caregivers are banned, everyone loses—the families, the individuals, and the integrity of the Medicaid program itself.
So, what does a waiver waive? It waives the institutional care rules, making community-based services possible. But for this promise to mean anything, there needs to be a system of home and community care—and family caregivers must be recognized and compensated as a vital part of that system.
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