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.
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