CW: Institutionalization, Neglect, & Death
Cayden Armour has spent the most of his life in a Florida nursing facility, where his father claims the disabled 9-year-old was frequently left alone in his room for hours, sitting in dirty diapers.
Cayden survived a near drowning accident as an infant. He is one of several children in Florida who have been pulled from their families. Instead he was institutionalized rather than receiving state-provided at-home care.
A federal judge has decided that Florida has been unnecessarily segregating children with complex medical needs and putting other disabled children at risk of unnecessary institutionalization. The judge who issued his decision on Friday, stated that by declining to provide Medicaid services that would pay for private nursing care and allow children to live in their homes, the state was violating the Americans With Disabilities Act.
Families say they often felt forced to place their children in institutions. Parents couldn’t find in-home nurses to care for their children, leaving them exhausted. Once institutionalized, children were neglected, sometimes being left in their rooms all day.
Mary Ehlenbach, the medical director of the Pediatric Complex Care Program at the University of Wisconsin, who interviewed 44 families with institutionalized children and submitted a report on her findings for the case, said that many families were told mistakenly that their children were medically unfit to live at home or that the family wasn’t eligible to bring their child home because of the size of their house.
Brittany Hayes told The Miami Herald in May that her son is always in a crib. Her son has lived at a nursing home his whole life. The five-year-old is in his crib whenever she video chats with him.
Heather Patton placed her son Dalton at Kidz Korner as an infant at a doctor’s urging. Dalton was born premature and has a tracheotomy and a g-tube. Dalton’s muscles were underdeveloped because he seldom left his crib.
At the age of two, Dalton came home. He was able to be weaned off his ventilator and began walking. Now 11, he loves Spider Man and is learning to read and write.
Disabled children are often eligible for Medicaid waiver programs that provide home and community based services which can be provided at home or in another setting. The state determines who qualifies and pays for the services.
However, the wait for home and community based services is long. According to the Agency for Persons with Disabilities, as of October, 2022, 22,488 Floridians were on the waiting list.
18-year-old JJ Holmes, has Cerebral Palsy. He has been on the waiting list for sixteen years. Holmes’s mother, Alison, assists him with all activities of daily living.
Home health care can be less expensive than institutionalized care. However, court documents show that Florida has increased funding for institutional services while cutting funding for home and community-based services.
Unfortunately, even with Medicaid, those who receive waivers find that Florida’s reimbursement rate is about 40% lower than the national average. Thus, making it difficult for them to afford the care they require.
When the lawsuit was filed, six nursing homes housed pediatric patients. Three of the facilities had closed by 2013, after the Miami Herald had written extensively about the conditions in the homes, including the children’s unit at Golden Glades Nursing & Rehabilitation, now called Sierra Lakes Nursing & Rehabilitation, a 180-bed facility near Miami Gardens where the Herald documented the deaths of two children.
Among these was the case of Marie Freyre, a 14-year-old girl with cerebral palsy and epilepsy. Freyre died within 24 hours of being transferred from a Tampa hospital to the Golden Glades nursing home over her family’s concerns. The young girl arrived, yelling in terror.
The verdict directly affects an estimated 140 children in Florida nursing homes. It also affects more than 1,800 children who are at risk of being institutionalized due to a lack of home-care services.
According to disability groups and legal experts, the case is expected to set a precedent by clarifying what states must do to comply with the Americans With Disabilities Act. The Olmsted Decision passed in 1999 also requires that disabled people receive services in the most integrated setting possible. According to legal experts, the ruling confirms that states can be held accountable for how they manage home- and community-based services.
Disabled people deserve to live in their communities regardless of age. It doesn’t matter if someone is a child or an adult. Florida needs to provide enough services for people to live at home.
Sources:
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.
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/.
Miller, Daylina. “Report: Florida Ranks 34th in Serving People with Intellectual, Developmental Disabilities.” WUSF Public Media, University of South Florida, 24 Jan. 2019, https://wusfnews.wusf.usf.edu/health-news-florida/2019-01-24/report-florida-ranks-34th-in-serving-people-with-intellectual-developmental-disabilities.
Shapiro, Joseph. “Lois Curtis, Who Won a Landmark Civil Rights Case for People with Disabilities, Died.” NPR, 5 Nov. 2022, https://www.npr.org/2022/11/05/1134426128/lois-curtis-who-won-a-landmark-civil-rights-case-for-people-with-disabilities-di.