CW: Death
Alison is eighty-nine years old and lives in Northern Ireland. She spends nineteen hours a day in bed. Like elsewhere, the home healthcare system in Ireland is stretched thin. Caregivers arrive around three o’clock, give her dinner, and help her into bed. They administer nighttime medication, including sleeping pills. She stays in bed until the next morning.
Alison says she isn’t forced into bed, but she doesn’t feel like she has much of a choice. She has epilepsy and a history of falling. She’s afraid to stand up on her own with no one around.
Since her routine changed, she has fallen several times. Once, she was on the floor for two hours waiting for help. She believes taking her medication so early contributes to the problem. But she doesn’t have another option. Her husband died fourteen years ago. She relies entirely on her caregivers. When the timing of that care shifts, her entire day collapses.
Around the world, millions of people face the same pressures. There aren’t enough caregivers, and the need is only increasing. Disabled people and older adults experience delayed services, inconsistent support, and long waits for essential care. The details differ by country, but the outcome is the same. Governments fail to invest in sustainable care, and the responsibility is put on families. They often have no choice but to fill the gaps themselves.
In Massachusetts, I recently endured a two-month-long battle to restore all of my PCA hours. I created a nineteen-page packet of evidence to send to MassHealth. For two days, I documented every moment when I needed help with activities of daily living. Letters from my doctors and physical therapist were included. This process was slow and draining. But ultimately, I was successful. The hours were reinstated.
My fight reflects the same global pattern: disabled people and older adults are forced to justify the support they require to live safely and independently. In North Carolina, families are fighting against cuts to Medicaid services. These services, provided by Medicaid’s Community Alternatives Program for Children, allow disabled children to live at home instead of in institutions. Disabled children like 11-year-old Finley Thomas rely on round-the-clock nursing care.
Disabled adults face similar challenges. Over twenty thousand people wait for a Medicaid Innovations Waiver. This waiver funds direct support workers and other services that make independent living possible.
One of the biggest contributing factors to the shortage is low wages. In North Carolina, home health aides earn about $15.30 an hour. However, working at an Amazon warehouse, people earn about $23 an hour.
Because of the ongoing shortage of home healthcare providers, families are often forced to care for their loved ones with little or no help. Millions of Americans provide unpaid care to disabled people and older adults every day. They lose income, stability, and their own health often suffers. Experts warn that relying on unpaid caregivers is not sustainable.
These stories show that Alison’s experience is part of a global crisis. Whether in Northern Ireland, Massachusetts, or North Carolina, the pattern is the same. Staffing shortages and funding gaps dictate the timing and availability of care. People lose their independence and freedom. This is not a national issue. It’s an international one, and it’s urgent.
Bonner, Lynn. “People with Disabilities Ask NC Legislators for Funding to Support Community Living.” NC Newsline, 29 Apr. 2026, https://ncnewsline.com/2026/04/29/people-with-disabilities-ask-nc-legislators-for-funding-to-support-community-living/.
Connor, Toni, and Eve Rosato. “‘I Spend 19 Hours in Bed’: Home Care Pressures Leave 89-Year-Old ‘Missing Freedom.’” BBC News, 30 June 2026, https://www.bbc.com/news/articles/cm2r7jm4446.
Hoban, Rose. “NC Families with Disabled Children Press Lawmakers to Maintain Funding as Federal Medicaid Cuts Loom.” North Carolina Health News, 18 May 2026, https://www.northcarolinahealthnews.org/2026/05/18/nc-families-disabled-children-lawmakers-funding-medicaid-cuts/.
Stedman, Nancy. “America’s Caregiver Crisis Is Burning Out Millions of Families.” Penn Leonard Davis Institute of Health Economics, 28 May 2026, https://ldi.upenn.edu/our-work/research-updates/americas-caregiver-crisis-is-burning-out-millions-of-families/.