More and more young people are living in long-term care facilities. In 2013, nearly 17% of people who required Medicaid long-term services and support were between the ages of 21 and 64, and 1% were under the age of 21.
Mathew Harp was 21 when he was sent to live in a long-term care facility. After a year, Harp was able to move back in with his mother in March of 2010. It was possible because the state of Georgia paid for personal care assistants to assist Harp with activities of daily living.
Funds from another program called Money Follows the Person paid to renovate his mother’s house to make it more accessible for Harp. It even paid for the new concrete sidewalk outside so he could maneuver his wheelchair out of the house and into his mother’s van. Harp moved out a few months later to live with his PCA.
Olmstead v. L.C. was a landmark Supreme Court decision decided in June 1999 that required states to eliminate unnecessary segregation of people with disabilities. Subsequently states had to ensure that people with disabilities receive services in the most integrated setting suited for their needs.
I have lived with my PCA for two years and love it. More support is required for disabled people to live in their communities. I had a difficult time finding reliable PCAs in college. In three semesters, I had three different people. They were frequently late, did not have reliable transportation, or did not show up. As a result, my mother and a friend frequently drove me to college.
There is a nationwide shortage of support employees. This is due, in part, to low wages. People can sometimes make more money working in a fast food restaurant. According to the Bureau of Labor Statistics, the hourly wage for PCAs and other home healthcare workers in the US is only $13.02. One out of every five home care workers, according to the New York Times, lives below the federal poverty line, and they make an average of $11 per hour in six states.
At the time of his death in 2013, Zach Sayne was 25. He passed away at a pediatric long-term care facility in Alabama. The same facility had served as his home for the past 15 years. The state of Georgia would pay for Zach’s care in a pediatric long-term care facility. The only medical facility that would accept Zach was in Montgomery, Alabama. Zach’s mother took the 400-mile roundtrip journey every two or three weeks for the last 15 years of his life. And when he was ill, she quit her job and moved in with him in the hospital.
Since no nursing home in Georgia would accept him, she transferred Zach from Georgia’s Medicaid program to Alabama’s. In 2010, when she wished to bring him home, Zach was no longer a Georgia resident, according to Georgia Medicaid officials, and was therefore no longer eligible for Georgia programs.
Sayne was told that she could regain guardianship of her son, bring him home, and place him on a Georgia Medicaid waiting list. The waiting list was years-long as is the case in much of the United States. Thousands of Americans are on waiting lists for home and community based services provided by Medicaid. However, no facilities in the state of Georgia would accept an adult in his 20s.
Zach was in a program for children that included physical therapy and other services until he was 21. That program ended when he reached adulthood. Zach’s health deteriorated as he spent the final years of his life primarily in bed.
One of my greatest fears as a 23-year-old living with Cerebral Palsy is being placed into a group home or other facility. I wouldn’t be able to make my own decisions. I wouldn’t get to choose what to eat or decide when to go to bed. Basic decisions, which most people take for granted, would be made for me.
My participation in the community would be limited as well. I wouldn’t be able to go to the movies, the library, or the mall. Additionally, eating out would be a thing of the past. I may not even be able to go outside on my own. I wouldn’t be able to leave on my own.
Disabled people have a right to live in their communities. Nobody should be forced to live in a group home or other facility. In addition, we need to fix the nationwide caregiver shortage as well. Care can’t wait because people will die without it.
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.
Eiken, Steve, et al. “Medicaid long-term services and supports beneficiaries in 2012.” Bethesda, MD: Truven Health Analytics, September (2016).
“How Two Women Changed Thousands of Lives.” Disability Rights Texas, Disability Rights Texas, 17 June 2019, http://www.disabilityrightstx.org/en/2019/06/17/olmstead20th/.
“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.
Shapiro, Joseph. “Why a Young Man Died in a Nursing Home, a State Away from His Mom.” NPR, NPR, 16 Jan. 2013, https://www.npr.org/sections/health-shots/2013/01/15/169457118/why-a-young-man-died-in-a-nursing-home-a-state-away-from-his-mom.
Shapiro, Joseph. “Youth in Nursing Homes Seek Alternative Care.” NPR, NPR, 9 Dec. 2010, https://www.npr.org/2010/12/09/131916238/youth-in-nursing-homes-seek-alternative-care.
Marselas, Kimberly. “As Seniors’ Presence in Nursing Homes Drops, Young People with Disabilities Stuck with Few Alternatives: Study.” McKnight’s Long-Term Care News, McKnight’s Long-Term Care News, 4 Oct. 2022, https://www.mcknights.com/news/as-seniors-presence-in-nursing-homes-drops-young-people-with-disabilities-stuck-with-few-alternatives-study/?fbclid=IwAR1scjkAnE4-6ewEz0UxUlsrlCXa9zUYaWMiAj5g6Wu47b0OsTTCBZNlrg4.