Federal judge rules state violates rights of children with complex medical needs

WEST PALM BEACH, Fla. — The state of Florida violates the rights of children with complex medical needs by keeping some children unnecessarily institutionalized in nursing facilities, while placing other children at serious risk of unnecessary institutionalization, U.S. District Court Judge Donald Middlebrooks in West Palm Beach ruled last week.

On Monday, the state Agency for Health Care Administration appealed the decision to the 11th Circuit Court of Appeals.

After a two-week bench trial in May, Middlebrooks wrote Friday in a 79-page decision that the children in nursing facilities are capable of living in the community. But they have not been given meaningful options other than institutional placement, according to testimony of experts and family members during the trial.

Also, Middlebrooks found that parents and guardians of institutionalized children overwhelmingly want their children to live at home, but that they have not been given meaningful options other than institutional placement.

The judge’s decision came after nearly a decade of litigation.

“Unjustified institutionalization of individuals with disabilities is unacceptable, especially given the advances in technology and in the provision of home-based care,” Middlebrooks wrote. “Any family who wants to care for their child at home should be able to do so.”

He also cited a major 1999 U.S. Supreme Court ruling that said “undue institutionalization” of people with disabilities is a form of discrimination.

But the state agency, which runs most of the Medicaid program, said in a statement: “The judge’s failure to understand the law is demonstrable in his order. The court’s conclusion that the state’s actions or omissions force children to live in nursing homes against their parent’s wishes is unsupported and refuted by the evidence presented at trial.”

“I was scared, and I didn’t feel like I had a choice,” Heather Patten testified about having to place her son in a nursing home when he was a toddler.

Another parent, Martin Carrizales, testified for his disabled teenage stepson: “The help that they would give is that they would put him in a home but I would not be able to take care of him, and that is not what I wanted for him.”

Approximately 140 children with disabilities are now housed in three pediatric nursing facilities across Florida. Also more are at risk of entering these institutions due to a shortfall of services, including home nursing care.

Many are dependent on medical technology such as ventilators.

In the Supreme Court’s landmark decision in Olmstead v. L.C. decided more than 24 years ago, Florida is required to serve children with disabilities in the most integrated setting appropriate to their needs, as long as the children or their guardians do not oppose community integration.

According to the court, Florida must take steps to ensure that children with complex medical needs can access the services they need to live in their own homes and communities. Florida must also develop transition plans for institutionalized children and engage families to ensure that they can make informed choices about where their children live.

“This is a momentous decision impacting hundreds of vulnerable children and their families,” Assistant Attorney General Kristen Clarke of the Justice Department’s Civil Rights Division said. “The court’s ruling sends a clear message that children with complex medical needs deserve to grow up with the love and support of their families and should not be confined to nursing facilities where they are stripped apart from their communities. The Civil Rights Division is strongly committed to ensuring that people with disabilities are not isolated from society but are fully integrated into their communities.”

“This important ruling will help Florida families of disabled children keep and care for their children at home by requiring increased access to medical support and services,” said U.S. Attorney Markenzy Lapointe for the Southern District of Florida. “We look forward to seeing the systematic changes in Florida needed to prevent the unnecessary institutionalization of children with complex medical needs.”

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