An essay by Heidi Knudsen in the Pittsburgh Post-Gazette puts a human face on a problem too often discussed only in policy terms: the severe shortage of home healthcare workers for disabled people. Her story is not one about abstract funding debates or workforce statistics. It is about her son, Bode, who survived open-heart surgery as an infant and now needs around-the-clock care.
Because there simply are not enough trained home healthcare workers available, she cannot safely leave him alone. The result is a life limited by a system that fails to provide the support it promises.
For families like the Knudsens, home healthcare is essential. It enables parents to work and offers a level of stability rather than forcing families to live from one crisis to the next. Without home healthcare, parents often must take on the role of caregiver for their children, no matter their own health, finances, or job situation. This can lead them to give up their jobs, lose their income and benefits, and ultimately face burnout without any safety net. The stress increases with the awareness that just one crisis could put their child in danger.
I’ve experienced this shortage firsthand due to cerebral palsy. In my first three semesters of college, before the pandemic, I had three different personal care assistants (PCAs). The constant turnover was not only inconvenient but also destabilizing.
I didn’t want to spend my days worrying about getting to class on time or whether someone would be there to help me use the bathroom. These are basic needs. When there is not enough support, it makes it harder for disabled people to be a part of society. Independence becomes conditional, depending on whether the workforce is stable.
The instability families face shows up in national data. The turnover rate in home healthcare has jumped by more than 14% in recent years, reaching 79.2%, according to Activated Insights’ 2024 Benchmarking Report. When nearly four out of five workers leave within a year, people and families struggle to find reliable, trained caregivers.
The shortage of home healthcare workers didn’t appear suddenly. It stems from low wages, demanding work, and ongoing underfunding of home and community-based services. Home healthcare workers perform complex and important tasks, yet their pay often makes it hard for them to make ends meet. This situation also makes it challenging to stay in the field long-term. High turnover is common, leading people to have multiple caregivers in a short time, or wait months for services that have already been approved.
This crisis is not limited to Pennsylvania. Across the United States, states are facing similar challenges. In rural areas, recruitment and retention are especially challenging. In urban areas, demand often exceeds supply.
People and families in states with more expansive Medicaid programs might get more hours of care. However, they still struggle to find employees willing to work for such low wages. Federal data and national advocacy groups have noted ongoing workforce shortages in home and community-based services. This affects tens of thousands of disabled children and adults who need care.
State and federal funding structures, especially those tied to Medicaid, play a key role in this crisis. Medicaid is the main payer of long-term services for disabled people, but reimbursement rates often fall short of what is needed to attract and retain employees. Even when people qualify for in-home care, those hours mean little if no one is available to provide them. Support exists on paper, but in reality, it often does not.
One of the most painful effects of this gap is that people are sometimes forced into institutional care. This happens not because it is the best choice, but because it is the only choice. This goes against what most families want and what research shows: disabled people generally do better at home, surrounded by family, community, and familiar settings. Home-based care is often less expensive in the long run, yet the lack of investment in the workforce makes it seem out of reach.
Efforts in some states to expand paid family caregiving options or increase reimbursement rates for home healthcare workers have shown promise. Unfortunately, they are often limited by budgetary constraints and political disagreements over Medicaid spending. On a national level, policymakers have discussed workforce initiatives to improve recruitment and training, but implementation varies widely and is far from complete.
Knudsen’s piece reminds us that behind every policy decision are people and families working hard to keep themselves and their children safe and thriving. The shortage of home health aides is not just a workforce issue; it is a moral one.
Fixing the home healthcare shortage will require better pay, stronger funding, and policies that recognize caregiving as skilled and essential work. Until then, families like hers and disabled people like me will continue to live in a constant state of vigilance. Not because we cannot be at home, in school, or in our communities, but because the system has not made the support we need possible.
Sources:
Caldwell, Joseph. Reducing Costs for Families and States by Increasing Access to Home- and Community-Based Services. Brandeis University, Heller School for Social Policy and Management, 28 Mar. 2022.
Knudsen, Heidi. “Home Health Aid Shortage, Child Disability, State Funding.” Pittsburgh Post‑Gazette, Pittsburgh Post‑Gazette, 21 Dec. 2025,
Martin, Audrie. “Caregiver Turnover, Referral Rejections Continue to Increase in Home Care.” Home Health Care News, Aging Media Network, 15 Aug. 2024, homehealthcarenews.com/2024/08/caregiver-turnover-referral-rejections-continue-to-increase-in-home-care/.