CW: Institutionalization
Alabama children with physical disabilities are being institutionalized in nursing homes unnecessarily, according to the US Justice Department, which has threatened to sue the state unless changes are made to allow more of these children to live at home. A Justice Department investigation discovered that Alabama is violating Olmstead v. L.C. It requires that states provide services to people with disabilities in the environment that is best suited to their needs.
Attorney General Kristen Clarke reported the investigation’s findings in a letter to the Alabama Department of Human Resources, the Alabama Medicaid Agency, and the Alabama Department of Senior Services. It outlined improvements the state should undertake to increase community services and warned a federal lawsuit if action was not taken.
The federal investigation discovered that Alabama policies effectively limit community-based or long-term support services, which allow children with physical disabilities to live at home. Federal officials say the state has not effectively grown its community-based workforce. The Justice Department also stated that Alabama does not support foster parents who care for or are considering caring for children with physical limitations. According to the Justice Department, Alabama parents frequently confront the difficult decision of putting their children into nursing homes for the rest of their lives or quitting their jobs to become full-time caregivers.
P.J. Alexander said that he and his wife were one of the Alabama families. Kyle was born with a number of medical challenges, including genetic disorders and cerebral palsy. “We were able to keep him at home, just barely,” he told me. They had contemplated relocating to another state with more resources for families caring for severely challenged children. Kyle died abruptly on November 25 at the age of ten due to cardiac failure, according to Alexander.
Making matters worse is the fact that more than 3,100 Alabamians are on waiting lists for home and community-based services provided by Medicaid. Matthew Foster who is 31 was on the waiting list for eight years before receiving services. Foster has Down Syndrome.
Foster was included alongside his nondisabled peers in school. He has worked since he was a teenager. He now works at Chuck E Cheese, entertaining children as the costumed mouse. According to his mother, Susan Ellis, he enjoys entertaining and working with children, so it’s a wonderful fit. He also receives 20 hours of personal care every week, which includes assistance with apartment maintenance, bill payment, and shopping.
As of 2023, the South is home to 76% of those on home and community-based waiting lists, or more over 500,000 people. These numbers do not include the thousands of people who need HCBS but have yet to be assigned to one of the overloaded waiting lists. However, legislators in these states have failed to provide funding year after year to eliminate these waiting lists and build the care economy, ensuring that there are enough workers to provide these critical services.
In Florida, 19-year-old JJ Holmes has cerebral palsy. He lives with his mother, Allison. As of 2023, he had been on the waitlist for an iBudget waiver for sixteen years.
Unfortunately, disabled children also live in institutions and nursing homes in Florida. In 2023, a federal judge decided that Florida had been unnecessarily segregating children with complex medical needs and putting other disabled children at risk of unnecessary institutionalization. The judge who issued his decision in July, stated that by declining to provide Medicaid services that would pay for private duty nursing care and allow children to live in their homes, the state was violating the Americans With Disabilities Act.
It is vital for states to assist disabled residents because the federal government has been hesitant to act. In 2022, the government disability employment program AbilityOne prohibited contractors from paying subminimum wages to employees, which was a significant improvement but had limited impact. Federal legislation aimed at eliminating subminimum wages across the board has bipartisan support, but it has yet received approval from Congress.
Where someone lives, shouldn’t determine whether or not they receive services. Policies need to be reformed so people can get the help they need, regardless of where they live.
Sources:
Cason, Mike. “More than 3,100 Intellectually Disabled in Alabama Waiting on Help from the State.” AL.Com, Alabama Media Group, 27 Oct. 2014, http://www.al.com/news/2014/10/more_than_3100_intellectually.html.
“Justice Department Says Alabama Institutionalizes Too Many Children with Disabilities.” AP News, AP News, 17 Jan. 2025, apnews.com/article/alabama-justice-department-children-disabilities-7fd098d9caa5eb85d9ec5c1678e3a502.
Kelly, Dom. “Voices: Southern Legislatures Must Dismantle Poverty Traps for Disabled People.” Facing South, Facing South, 24 Jan. 2023, http://www.facingsouth.org/2023/01/southern-legislatures-must-dismantle-poverty-traps-for-disabled-people.
Miller, Carol Mabin. “‘Just Another Baby for Them.’ Parents, Feds Fight for Kids Stuck in Florida Nursing Homes.” The Miami Herald, , 7 May 2023, http://www.miamiherald.com/news/health-care/article273784385.html.
Morris , Amanda. “Florida Kept Disabled Kids in Institutions. A Judge Is Sending Them Home.” The Washington Post, 20 July 2023, http://www.washingtonpost.com/wellness/2023/07/19/florida-disabled-kids-institutions-judge-ruling/.
Perry, Mitch. “A Disabled Teen on a Long Waiting List Said Lawmakers Need to Recast FL’s Legislative Priorities .” Florida Phoenix, States Newsroom , 12 Sept. 2023, floridaphoenix.com/2023/09/12/a-disabled-teen-on-a-long-waiting-list-said-lawmakers-need-to-recast-fls-legislative-priorities/.