Matt Potter is 36 years old. He has Cerebral Palsy. He uses a power wheelchair. His parents are his primary caregivers. They help him with activities of daily living, such as bathing and dressing.
Potter faces a problem millions of disabled Americans are all too familiar with. He has difficulty finding home healthcare workers to assist him every day. North Carolina, where Potter lives, is facing a severe shortage of home healthcare workers.
Potter worries about what his life will look like as his parents’ age. They could become ill at any time. For their son, this could result in institutionalization, which he opposes. Potter says an institution “is about the least appropriate place possible for me.”
There is a critical shortage of home healthcare professionals nationwide, which affects the elderly and disabled. The shortage will worsen as more individuals require care due to disabilities, illnesses, or aging.
The COVID-19 pandemic has only exacerbated the shortage. Before the COVID-19 pandemic, the turnover rate in home healthcare was 40-60%. Home healthcare workers have long been difficult to find. This is due, in part, to low wages. PCAs and other home healthcare workers earned an average of $14.05 per hour in May 2021, according to the Bureau of Labor Statistics. In the same year, 20% of home healthcare workers lived in poverty, according to The New York Times.
Like many states in the U.S., North Carolina maintains a waiting list for their home and community-based services waivers. In North Carolina, there are 16,439 people on the “Registry of Unmet Needs,” the waiting list for placement on the Innovations Waiver. There are currently 14,138 spots on the waiting list. They are filled with an average wait time of five to ten years. However, spaces become available county by county, with some areas projecting wait times of more than a decade.
Roan, the son of Desirée Moffitt and Jacob Fields, was born with autism and Fragile X Syndrome in 2012. Individuals with Fragile X syndrome have severe behavioral challenges such as hyperactivity, impulsivity, and anxiety, as well as impaired language development and seizures.
At the age of three, they placed Roan on a waiting list for North Carolina’s Innovations waiver. More than a decade has passed. More than 14,000 waivers are available in North Carolina. Unfortunately, more than 16,000 people are on the waiting list.
These waivers can provide a range of services. Examples of covered services under a Medicaid waiver include hospice care, adult day health services, home healthcare, and home-delivered meals. Millions of America’s most vulnerable residents rely on these services to remain in their communities.
I am among those who benefit from home and community-based services. My PCA helps me with daily tasks such as toileting, showering, and dressing. Medicaid allows me to live in an apartment like many other adults. I moved out nearly three years ago at the age of 20. Without my PCA, I might have to live in a long-term care facility. In other words, without Medicaid, life as I know it would vanish.
Medicaid eligibility should be expanded, and waiting lists should be eliminated. People are often forced into dangerous situations without Medicaid, which can have catastrophic consequences.
AARP and National Alliance for Caregiving. Caregiving in the United States 2020. Washington, DC: AARP. May 2020. https://doi.org/10.26419/ppi.00103.001
Donnelly-DeRoven, Clarissa. “Low Pay, No Space for Advancement: Why the Workers Who Support People with Disabilities Are Leaving.” North Carolina Health News, North Carolina Health News, 13 Feb. 2023, https://www.northcarolinahealthnews.org/2023/02/13/low-pay-no-space-for-advancement-why-the-workers-who-support-people-with-disabilities-are-leaving-the-field/.
Donovan, Liz, and Muriel Alarcón. “Long Hours, Low Pay, Loneliness and a Booming Industry.” The New York Times, The New York Times, 25 Sept. 2021, https://www.nytimes.com/2021/09/25/business/home-health-aides-industry.html.
“Home Health and Personal Care Aides: Occupational Outlook Handbook.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 8 Sept. 2022, https://www.bls.gov/ooh/healthcare/home-health-aides-and-personal-care-aides.htm.
“Home- and Community-Based Services.” Centers for Medicare & Medicaid Services, United States Department of Health and Human Services, https://www.cms.gov/outreach-and-education/american-indian-alaska-native/aian/ltss-ta-center/info/hcbs.
Jones, Mary Helen. “The Personal Impact of a Statewide Shortage.” Spectrumlocalnews.com, Charter Communications, 23 Jan. 2023, https://spectrumlocalnews.com/nc/charlotte/politics/2023/01/23/the-personal-impact-of-a-statewide-shortage.