Around the country, everyday families are piecing together caregiving because they have no other choice. Some states have found ways to support family caregivers in ways that make it work for people with disabilities, their loved ones, and the care system.

In a structured program, monitored by the state Medicaid agency, some family caregivers are paid a modest amount to support their loved one. It gives the person with a disability a reliable and familiar caregiver, and it takes some pressure of families juggling all aspects of their lives – work, family, caregiving, and more.

But when Ohio lawmakers prepared to vote on legislation that would prohibit family members from being paid through Medicaid programs, disability advocates and families mobilized immediately.

Family Caregivers Are the Backbone of America’s Care System

Family caregivers are already doing the work that keeps America’s long term care system functioning.

According to a recent AARP report, family caregivers now provide more than $1 trillion worth of care each year in the United States. Nearly 59 million Americans care for aging parents, spouses, children with disabilities, neighbors, and other loved ones, contributing an estimated 49.5 billion hours of care annually. If that care were compensated at market rates, it would be valued at approximately $1.01 trillion every year.

Most of this work is unpaid.

Family caregivers help loved ones bathe, dress, prepare meals, manage medications, attend medical appointments, and increasingly perform complex medical and nursing tasks that were once provided in institutional settings.

More than half of family caregivers now provide high intensity care, averaging 27 hours of caregiving each week. The 49.5 billion hours of care they provide annually is equivalent to nearly 24 million full-time workers, roughly 17 percent of the entire U.S. workforce.

This caregiving work is not optional.

Ohio, like many states, faces a severe direct care workforce shortage.

Providers frequently struggle to fill authorized care hours, leaving families to step in and provide support that Medicaid cannot otherwise deliver. Without family caregivers, many people would go without critical assistance with daily activities, medication management, transportation, and personal care.

Without these caregivers, millions more Americans would rely on expensive institutional care, dramatically increasing costs for taxpayers. In fact, the economic value of family caregiving now exceeds total federal, state, and local Medicaid spending nationwide.

Ohio’s Disability Community Mobilized Quickly

The proposal moved quickly, but so did Ohio’s disability community.

The Arc of Ohio, self-advocates, family caregivers, providers, and aging advocates mobilized rapidly to educate lawmakers about the devastating consequences the proposal would have for people with disabilities and older adults. Committee hearings were packed with people with disabilities, family caregivers, and advocates who shared deeply personal stories about what Medicaid-funded family caregiving makes possible and what would happen if that support disappeared. Wheelchairs lined the hearing room as lawmakers listened to testimony from families who described the realities of navigating a strained care system and the essential role they play in keeping their loved ones safe at home.

The testimony shifted the conversation to the real experiences of Ohio families. Several legislators were visibly moved during the hearings.

Within hours, the proposal to prohibit family caregiver payments had been removed from the bill, demonstrating the power of coordinated advocacy and authentic lived experience.

The Bigger Problem: When Allegations of Fraud Becomes an Excuse to Cut Care

The Ohio debate reflects a troubling national trend.

Across the country, allegations of fraud are increasingly being used to justify greater scrutiny of Medicaid, home and community-based services (HCBS), and family caregiving programs. Program integrity matters and fraud should be rooted out. But in the process, what’s happening around the country now is making it harder for people to access the care they need.

Medicaid and other safety net programs are already subject to extensive federal and state oversight, and the overwhelming majority of beneficiaries, family caregivers, and providers follow the rules. Yet fraud narratives increasingly cast suspicion on family caregivers and community-based providers who fill critical gaps in an already strained care system.

These attacks go beyond program integrity. They devalue caregiving, undermine the rights of people with disabilities to receive services at home, and threaten a care infrastructure that depends on family caregivers, whose unpaid contributions exceed $1 trillion annually.

What’s Next and How You Can Help

Advocates in Ohio prevailed. Following overwhelming opposition from people with disabilities, families, and advocates, the proposal to eliminate Medicaid waiver payments for family caregivers was removed from the legislation moving forward.

This victory was built on decades of advocacy by self-advocates, family members, disability rights organizations, and The Arc’s network.

Right now, The Arc of the United States and our chapters are pushing back against threats to Medicaid, HCBS, and other programs that make community living possible. And those threats are coming from many avenues.

You can help by:

• Taking action with us. We are mobilizing people to protect our hard-won rights.
• Connecting with the chapters of The Arc in your state. Many of these fights are happening in state houses, and you can be a part of the effort.
• Follow us on social media and spread the word. You can find us on Facebook, Instagram, and LinkedIn.