Disabled Children Are Stuck in Nursing Homes

CW: Institulization, Death & Neglect

Older people with wheelchairs, walkers, and hearing aids spend their final years in an institutional setting at the Plantation Nursing and Rehabilitation Center on Northwest Fifth Street. Medically frail young children at the beginning of their lives spend day after day, year after year, confined to cribs in a nearby but separate environment. These children may spend the rest of their lives here, with little to do but look at the television while being watched by shift staff. They are among the youngest nursing home patients in Florida. And they live in an institution within an institution known as The Kidz Korner.

Court documents in a federal lawsuit set for trial before U.S. District Judge Donald M. Middlebrooks in West Palm Beach on Monday. According to the complaint, Florida’s reliance on such institutions for caring for young people with disabilities breaches their civil rights. Additionally, Florida could be found to be violating the Olmstead decision.

In 1999, the Supreme Court ruled that services for those with disabilities must be provided “in the most integrated setting possible.” The Supreme Court heard this case after two women with disabilities from Georgia wanted to leave the nursing homes where they lived. The State of Georgia denied their request. Lois Curtis and Elaine Wilson wished to live in their communities.

The decade-old legal battle might lead to a reckoning for Florida. The state likes to brag about its excellent financial standing; the $117 billion budget passed last month reached a new high. At the same time, it restricts finances for the care of children and others in need. Legislators select how much money to spend on Floridians with severe disabilities and medical requirements, regardless of necessity. When the money goes out, that’s the end of it. That is why Floridians needing social services might be on waiting lists for years if not decades. As of October 2022, data from the Agency for Persons with Disabilities showed 22,488 people were on the waiting list for the iBudget waiver.

18-year-old JJ Holmes, who lives with Cerebral Palsy, has been on the waiting list for sixteen years. Holmes’s mother, Alison, assists him with all activities of daily living. Lifting him has become more difficult as he’s grown. He now weighs 110 lbs, and she is unsure how long she can continue to lift him. She is already experiencing chronic back pain.

Jason Hughes also has severe Cerebral Palsy. He was born prematurely. Hughes’ relationship with his supported living coach, Ernest Bennerman, is built on trust, comfort, and an understanding that comes from being in each other’s lives for the past 17 years. Hughes’ mother, Carol Novak, said she could no longer care for him at age 73.

The state argued that some of Bennerman’s responsibilities as a supported living coach could be done by so-called “personal supports.” These caregivers don’t receive the same amount of training or pay. Novak says that this puts her son’s health and safety in jeopardy.

While allowing parents to care for their vulnerable children at home, providing at-home nursing help and medical equipment may not cost much more than a nursing home bed. Medicaid-managed care plans use the state’s money. Few families are approved for 24-hour nursing care, according to children’s advocates. Those who are authorized must deal with famously unreliable in-home nursing, a result of the state’s pitifully low reimbursement rates.

And so parents, many of whom cherish their children and want to show them love and affection, are forced to put them in nursing homes, sometimes hundreds of miles distant. Kidz Korner is one of three nursing homes in the state that currently house children.

State health administrators have long insisted that the care children are given in nursing homes is superior to what parents can offer. However, evidence shows that children are often emaciated and unkempt. Some children are left in dirty diapers and are not bathed regularly.

Brittany Hayes says 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.

New evidence in the lawsuit includes reports and sworn declarations from pediatricians, scholars, and others who condemn Florida’s regulations as antiquated and inhumane. The latest data contains statements from parents who say they would prefer to care for their children at home – accounts that contradict the state’s long-standing claims. The litigation revolves around Florida’s persistently troubled Medicaid program, which serves as the state’s last resort insurer for medically fragile children and adults, as well as Floridians with disabilities.

As a result, there are tens of thousands of disabled Floridians waiting for community-based or in-home care, and many of them will pass away before they get to the top. There is also a waiting list for medical foster care, a separate program for frail children whose parents want to keep them out of institutions. To participate in the program, a parent must give up custody of their child to the state, which many parents find unjust.

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 seizures who 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.

According to state figures, about 20% of the state’s population is on Medicaid, including nearly 43% of all children — and slightly more than half of children with special healthcare needs. The state budgeted approximately $28 billion for Medicaid-funded healthcare, an arbitrary sum that is inadequate, forcing care to be rationed.

Medicaid must be expanded, and waiting lists must be eliminated. Disabled people deserve to live in their communities regardless of age or disability. It doesn’t matter whether a person is a child or an adult. A five-year-old and a fifty-year-old both have the right to live in their community.


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.

McGivern, Kylie. “Families Fight to Maintain Care for Loved Ones with Developmental Disabilities.” ABC Action News Tampa Bay (WFTS), E. W. Scripps Company, 16 Aug. 2021, https://www.abcactionnews.com/news/local-news/i-team-investigates/families-fight-to-maintain-care-for-loved-ones-with-developmental-disabilities.

Miller, Carol Mabin. “‘Just Another Baby for Them.’ Parents, Feds Fight for Kids Stuck in Florida Nursing Homes.” The Miami Herald, The McClatchy Company, 7 May 2023, http://www.miamiherald.com/news/health-care/article273784385.html.

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