Recent statements from administration officials regarding family caregivers and community-based services, taken together with the proposed deep cuts to the HHS budget and elimination of key disability programs, have left family caregivers and the people they support gravely concerned about the future of home- and community-based services.
The National Alliance for Caregiving sent a letter to House and Senate leadership urging them to protect access to home- and community-based services (HCBS) for family caregivers and people with disabilities while ensuring program integrity (Read the full letter here). In response to the recent remarks from administration officials, the National Alliance for Caregiving issued the following statement:
Recent statements from federal leaders suggesting that family members should simply step in where Medicaid home and community-based services (HCBS) leave off reflect a profound misunderstanding of what caregiving in America looks like today.
Caregiving in the US 2025, our research with AARP, makes the reality unmistakable. There are now 63+ million family caregivers in this country — 1 in 4 adults – about 20 million more than a decade ago. Nearly 1 in 4 provide 40 or more hours of care every week, the equivalent of a full-time job on top of the one they’re already working. More than half are performing complex medical and nursing tasks — wound care, injections, managing medications, operating medical equipment — most without any training. Sixty-four percent report high emotional stress. Forty-five percent report high physical strain. Nearly half are taking on debt, draining savings, or otherwise absorbing serious financial hits because of the care they provide.
This is not a gap that families can or should quietly absorb. It is already the largest unpaid workforce in the country. According to AARP, family caregivers contribute $1 trillion to the US economy every year — more than total Medicaid spending and more than what private employers spend on health care. Policies that push even more of this work onto families don’t save money; they shift costs onto caregivers’ wages, retirement security, physical health, and mental health, and ultimately back onto the public programs those family caregivers themselves will one day need.
HCBS allows persons with disabilities and older adults who need assistance with activities of daily living to live in their own homes and communities. Direct support professionals and HCBS providers deliver specialized care that keeps people out of far more expensive institutional settings and allows family caregivers to stay employed, stay healthy, and stay in the role of spouse, parent, or child — not unpaid nurse, case manager, and aide around the clock. Family caregivers cannot, and should not, do this work alone without support.
Family caregivers deserve a partner in the federal government. That means investing in HCBS, not dismantling it. The data and the economic benefits are clear: millions of families are already struggling, and we cannot afford to get this wrong.
