CW: Abuse & Neglect:
An independent government agency has warned President Joe Biden and Congress that immediate action is needed to strengthen the nation’s home and community-based services system. The system has been underfunded for decades. There are 820,000 disabled people on waiting lists for home and community-based services across the country, but demand for such programs could be much higher.
In some states, the wait can be a decade or more. 18-year-old JJ Holmes of Florida has been on the waiting list for sixteen years. Patricia Lewis’s son Ques has been on the waiting list since he was a teenager. Last year he was 30 and still on Florida’s waiting list. Rick Elskamp’s 21-year-old daughter Sheridan has been on the waiting list in Kansas for nine years.
According to a National Council on Disability report, the COVID-19 pandemic resulted in “needless deaths” among individuals with intellectual and developmental disabilities. This is a direct result of flaws in the delivery of home and community-based services. Additionally, the organization released a report in October 2021. According to nationwide data, one-third of COVID-19 deaths in the United States occurred in facilities for the elderly and disabled between the start of the pandemic and March 2021.
Fourteen million Americans require community-based care. 40% of those individuals are under the age of 65. As a result, those under 30 are the fastest-growing population of nursing home residents. This statistic is frightening. Long-term care facilities are typically considered places for elderly people to live. However, this isn’t always the case.
As a 23-year-old with CP, the thought of living in a long-term care facility saddens me. I wouldn’t be able to make my own decisions. I wouldn’t get to choose what I had for breakfast or when I went to bed. My access to the community would be much more limited as well. I couldn’t go to the movie theater, the mall, or out to restaurants whenever I wanted to. My mental and physical health would deteriorate as well. My friends and family wouldn’t be allowed to visit whenever they wanted.
Abuse is common as well. According to a survey of nursing home employees in the United States, 40% admitted to committing psychological abuse in the previous year and 10% admitting to committing physical abuse. A systematic assessment of institutional abuse found that physical violence is frequently used as a form of retaliation by personnel against physically hostile residents. Staff members also claimed that they were more likely to withhold choices to combative residents. 1.5% of employees self-reported stealing in another research study conducted in the US.
For those like me, Medicaid is a lifeline. I am among millions of Americans who benefit from Medicaid-funded home and community-based services. My PCA assists me with daily activities such as toileting, bathing, and dressing. Without my PCA, I could end up being forced to live in a long-term care facility. In other words, if Medicaid did not exist, life as I know it would end instantly.
Waiting lists must be eliminated, and Medicaid must be expanded. Without help, people are frequently forced into unsafe environments, which can have devastating impacts.
Sources:
Diament, Michelle. “Community-Based Services Should Be Mandatory Medicaid Offering, Federal Agency Says.” Disability Scoop, Disability Scoop, 12 Dec. 2022, https://www.disabilityscoop.com/2022/12/13/community-based-services-should-be-mandatory-medicaid-offering-federal-agency-says/30172/.
Garcia, Eric. “Biden Is Wrong. the Pandemic Isn’t over for Disabled Americans.” MSNBC, NBCUniversal News Group, 23 Sept. 2022, https://www.msnbc.com/opinion/msnbc-opinion/biden-wrong-pandemic-isn-t-over-disabled-americans-n1299051.
Griffin, Nicole. “Thousands of Disabled Floridians Spending Years on Medicaid Waiver Waitlist.” Spectrum News 13, Spectrum News, 31 Oct. 2022, https://www.mynews13.com/fl/orlando/news/2022/10/31/thousands-of-disabled-floridians-waiting-years-to-get-off-wait-list-for-help.
Mipro, Rachel. “Kansas Disability Waitlist Study Could Take Two Years as Needs Mount.” Kansas Reflector, States Newsroom , 21 Oct. 2022, https://kansasreflector.com/2022/10/21/kansas-disability-waitlist-study-could-take-two-years-as-needs-mount/.
Mipro, Rachel. “Parents of Disabled Kids Urge Kansas Lawmakers to Expand Aid and Fix Issues with Health Care System.” Kansas Reflector, States Newsroom , 27 Sept. 2022, https://kansasreflector.com/2022/09/27/parents-of-disabled-kids-urge-kansas-lawmakers-to-expand-aid-and-fix-issues-with-health-care-system/.
Maxwell, Scott. “Man with Down Syndrome, on Florida’s Waiting List for Help for 16 Years, Is Not Alone: Scott Maxwell Commentary.” Orlando Sentinel, Tribune Publishing Company, 2 Mar. 2022, https://www.orlandosentinel.com/opinion/scott-maxwell-commentary/os-op-cl-florida-disabilities-waiting-list-waiver-scott-maxwell-20220302-urlydjlf55cgdmuk2zpmq5bwjm-story.html.
Yongjie Yon, Maria Ramiro-Gonzalez, Christopher R Mikton, Manfred Huber, Dinesh Sethi, The prevalence of elder abuse in institutional settings: a systematic review and meta-analysis, European Journal of Public Health, Volume 29, Issue 1, February 2019, Pages 58–67, https://doi.org/10.1093/eurpub/cky093