One of my greatest fears as a person with Cerebral Palsy is the possibility of being placed in a nursing home when it is not actually necessary. I don’t want to have to live in a facility in my 20s. Many nondisabled adults probably don’t even realize that many people in long-term care facilities are not elderly. According to federal nursing home data, over 6,000 young people under the age of 21 live in nursing homes in the United States. In 2010, Young people ages 31 to 64 made up 14 percent of the nursing home population, an analysis of federal data from the Department of Health and Human Services by NPR’s Investigative Unit found.
Philippe “Flip” Rivera who lives with CP, bought a house last May. Due to a lack of home healthcare workers, he has been unable to move into his own home. Rivera has been forced to continue living at Monroe County Hospital in Rochester, NY, where he’s lived for the past fifteen years. Rivera has limited autonomy residing in a facility. He was even forced to wear a monitor similar to a parolee’s to track his movements. Rivera isn’t a criminal and shouldn’t be treated as such just because of his disability.
Similarly, Patrick Durkin of Maryland, who is a quadriplegic, says that Medicaid forces him to live in a nursing home before he qualifies for a waiver for in-home nursing care. This is because Durkin is on Medicare and is 65 years old. Because of Durkin’s home care nurse, he can go to hockey games and join his family for dinners. If he is forced into a nursing home, Durkin won’t have the same access to his community.
Home health care workers are hard to find. This is partly due to low pay. PCAs and other home healthcare professionals in the United States earn just $13.02 per hour, according to the Bureau of Labor Statistics. According to the New York Times, the average hourly wage in six states is only $11, and one out of every five home care professionals lives in poverty. According to Altarum, a nonprofit research and consulting firm focused on health care, the overall number of workers in home health care professions nationwide declined by roughly 2% in 2020.
People with disabilities have the right to live at home. Living at home gives most disabled people greater freedom than living in a long-term care facility. Wages must rise across the board to make it simpler to find home health aides. Home care workers play an essential role in keeping the elderly and disabled alive, and they should be paid fairly.
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
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.
Evans, Noelle E.C, and Racquel Stephen. “New York’s Home Aide Shortage Keeps Man from Living in His Own House.” WXXI News, WXXI News, 23 Feb. 2022, https://www.wxxinews.org/local-news/2022-02-23/new-yorks-home-aide-shortage-keeps-man-from-living-in-his-own-house.
“Home Health and Personal Care Aides : Occupational Outlook Handbook.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 8 Sept. 2021, https://www.bls.gov/ooh/healthcare/home-health-aides-and-personal-care-aides.htm.
Leshan, Bruce. “A Paralyzed Maryland Man Says Medicaid Is Forcing Him out of His Home and into an Institution.” WUSA9.com WUSA9, 21 Feb. 2022, https://www.wusa9.com/article/features/producers-picks/paralyzed-maryland-man-patrick-durkin-says-medicaid-forcing-him-out-of-his-home-and-into-an-institution/65-31d1cd29-f645-4615-a0ee-27c3ffbf2c22.
Shapiro, Joseph. “A New Nursing Home Population: The Young.” NPR, NPR, 9 Dec. 2010, http://www.npr.org/2010/12/09/131912529/a-new-nursing-home-population-the-young.
Shapiro, Joseph. “Youth In Nursing Homes Seek Alternative Care.” NPR, NPR, 9 Dec. 2010, http://www.npr.org/2010/12/09/131916238/youth-in-nursing-homes-seek-alternative-care.