CW: Injury
Across the United States, getting disability services often depends more on how long you can wait than on whether you actually qualify. For many people and their families, the system that’s supposed to help is more like a long waiting game. People are stuck on waitlists for years, there’s a shortage of staff, and there are cuts nationwide.
Even though home and community-based services are often better and cheaper than living in an institution, many people can’t get the help they need. For a decade, at least half a million people nationwide have been stuck on waiting lists. Last year alone 600,000 people were still waiting.
Take JJ Holmes in Florida, for example. He has cerebral palsy and uses a wheelchair and a communication device. He was on the waiting list for Florida’s iBudget waiver for 17 years. He requires assistance with everyday tasks, and simple things like eating can take an hour. His story shows how even when someone clearly needs help and is approved for it, actually getting that help is challenging.
Another situation in Florida highlights how delays happen even when it’s an emergency. In Lee County, Stephanie Nordin’s son, Logan, who has autism, had a terrible fall, breaking his skull and five bones in his back. Even though they filed an emergency request to speed things up, he waited over a year for services. Even though the situation was called “urgent” that didn’t mean he had access to services.
In Pennsylvania, Tyler King, a 23-year-old from Erie County, has another problem. Tyler uses a wheelchair and needs daily help, but he’s been able to go to college and live at home thanks to his family and home health aides. However, this is made possible by his grandparents, who are getting older.
Even when the hours for care are approved, agencies often can’t find enough people to work them. This is because of ongoing staff shortages, often due to low pay and tough working conditions. If help isn’t available anymore, the likely outcome isn’t more home care, but him having to move into a facility.
Tom Nurse nearly lost his home while caring for his daughter, Shelby, who needs around-the-clock care. With no help from Medicaid, he had to leave his job to provide full‑time care, and the financial pressure pushed them to the edge. When services finally became available, everything changed: Nurse was able to return to work, and Shelby had the stability she needed to pursue her education — ultimately earning a master’s degree in mental health counseling.
You can see this pressure in Colorado too. Cindy Stevens has pretty much lost hope that a Medicaid program offering round-the-clock care will ever be available for her son, Evan, who has cerebral palsy. Evan is 35 now. He lived with his parents for many years before finally getting his own apartment after waiting nine years for a housing voucher. He works two part-time jobs and gets daily help, but his ability to live on his own is still uncertain. His parents are still the only ones who can help him at any time, and if there’s ever a gap in his care, it’s up to them to fill it.
These aren’t just isolated stories. They showcase a bigger problem: issues with the system itself – especially a lack of workers and slow administrative processes – that prevent services from reaching the people who need them. There aren’t enough direct care workers because the pay is low and the jobs are tough. Even when there’s money available, states often find it hard to turn that money into actual services.
How these programs are set up also creates problems. Medicaid waiver programs have limits on how many people can join and complicated rules, which can delay care even for those who desperately need it. Sometimes, money isn’t used, not because it’s not needed, but because the system just can’t get it to people efficiently.
Advocates are saying more and more that the problem isn’t just about money, but about how the whole system is designed. The real issue isn’t if help is promised, but if it is actually delivered. This difference has serious consequences. When home care is delayed or not available, people often end up in institutions, which usually cost more and don’t allow for as much independence.
The idea is simple: disabled people should be able to live in their own communities with the support they need, instead of being pushed into institutions. But actually making that happen is still challenging. Until the resources and services are finally available, disabled people and their families will just keep facing those same long waits and impossible choices. These aren’t just isolated stories — they are clearly about a system that is supposed to serve people but still struggles to actually provide what people need.
Sources:
Brown, Jennifer. “A Waitlist for 24/7 Care for Colorado Adults with Disabilities Is 7 Years Long. State Medicaid Cuts Could Double It.” The Colorado Sun, Larry Ryckman, 27 Mar. 2026, coloradosun.com/2026/03/27/medicaid-budget-cuts-developmental-disabilities-waitlist/.
Burns, Alice, et al. “A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2025.” KFF, KFF, 20 Nov. 2025, http://www.kff.org/medicaid/a-look-at-waiting-lists-for-medicaid-home-and-community-based-services-from-2016-to-2025/.
“Erie County Man Thrives Today – but Pa.’s Home Care System May Fail Him.” The Keystone Newsroom, USA Today , 14 Apr. 2026, keystonenewsroom.com/2026/04/14/erie-county-man-thrives-today-but-pa-s-home-care-system-may-fail-him.
Patrick, Craig. “Florida Sits on Millions in Unspent Funds for Disability Care While Thousands Wait.” FOX 13 Tampa Bay, Fox Corporation, 16 Apr. 2026, http://www.fox13news.com/news/florida-millions-unspent-funds-disability-care-thousands.amp.