Care In The Community Means Freedom:

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.


Diament, Michelle. “Community-Based Services Should Be Mandatory Medicaid Offering, Federal Agency Says.” Disability Scoop, Disability Scoop, 12 Dec. 2022,

Garcia, Eric. “Biden Is Wrong. the Pandemic Isn’t over for Disabled Americans.” MSNBC, NBCUniversal News Group, 23 Sept. 2022,

Griffin, Nicole. “Thousands of Disabled Floridians Spending Years on Medicaid Waiver Waitlist.” Spectrum News 13, Spectrum News, 31 Oct. 2022,

Mipro, Rachel. “Kansas Disability Waitlist Study Could Take Two Years as Needs Mount.” Kansas Reflector, States Newsroom , 21 Oct. 2022,

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,

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,

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,

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