After a decade-long legal fight, a federal judge Friday ordered Florida to make changes to keep children with “complex” medical conditions out of nursing homes and help them receive care in their family homes or communities.
U.S. District Judge Donald Middlebrooks, siding with the U.S. Department of Justice, ruled that Florida has violated the Americans with Disabilities Act and the rights of children “who rely upon the provision of vital Medicaid services and are trying, in vain, to avoid growing up in nursing homes.”
“Unjustified institutionalization of individuals with disabilities is unacceptable, especially given the advances in technology and in the provision of home-based care,” Middlebrooks wrote in a 79-page decision. “Any family who wants to care for their child at home should be able to do so.”
Middlebrooks criticized the state for not doing more to ensure services such as private-duty nursing that could enable children to live outside of nursing homes and to help children who are at risk of being institutionalized. The case centers on children in the Medicaid program with conditions that often require round-the-clock care involving such needs as ventilators, feeding tubes and breathing tubes.
“Those who are institutionalized are spending months, and sometimes years of their youth isolated from family and the outside world,” Middlebrooks wrote. “They don’t need to be there. I am convinced of this after listening to the evidence, hearing from the experts, and touring one of these facilities myself. If provided adequate services, most of these children could thrive in their own homes, nurtured by their own families. Or if not at home, then in some other community-based setting that would support their psychological and emotional health, while also attending to their physical needs.”
The Justice Department filed the lawsuit in 2013, after conducting an investigation that concluded the state Medicaid program was unnecessarily institutionalizing children in nursing homes. The state has vehemently fought the allegations and the lawsuit, with the U.S. Supreme Court last year declining to take up a state appeal aimed at preventing the case from moving forward.
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Friday’s ruling said about 140 children in the Medicaid program are in three nursing homes in Broward and Pinellas counties. It also said more than 1,800 children are considered at risk of being institutionalized.
Middlebrooks wrote that the Americans with Disabilities Act requires the state to provide services in the most “integrated setting appropriate” to meet the needs of people with disabilities. He also cited a major 1999 U.S. Supreme Court ruling that said “undue institutionalization” of people with disabilities is a form of discrimination.
Most beneficiaries in Florida’s Medicaid program receive services through managed-care organizations. A key part of Middlebrooks’ ruling was that the Medicaid program and managed-care organizations were not providing adequate private-duty nursing that could enable children to receive care in their family homes or communities.
“By the close of the evidence, I was convinced that the deficit of PDN (private-duty nursing) in Florida is causing systemic institutionalization,” wrote Middlebrooks, a South Florida-based judge who was appointed to the bench by former President Bill Clinton.
As part of the ruling and an accompanying injunction, Middlebrooks ordered that the Medicaid program provide 90 percent of the private-duty nursing hours that are authorized for the children. He also ordered the state to improve what are known as “care coordination” services and to take steps to improve the transition of children from nursing homes.
Middlebrooks, who held a two-week trial in May, also criticized the state’s oversight of managed-care organizations and ordered a monitor to help carry out the order.
“One of the most perplexing aspects of this case is the apparent unwillingness of the state to enforce its contracts,” he wrote. “The state has contracted with managed care organizations to establish complete medical provider networks to service the needs of children with medical complexity. Part of the required network is to provide home health care to eligible members in a clinically appropriate and timely manner. The managed care organizations have contracted to deliver, not endeavored to deliver, medical treatment to their members.”
In an April 28 court document, attorneys for the state disputed that the Medicaid program was not properly providing services to the children.
“The United States claims that parents are demanding the return of their children, but cannot take them home because Florida fails to deliver Medicaid services,” the state’s attorneys wrote. “That assertion finds no basis in the evidence. Each child’s circumstances are different and individualized, and each lives in a nursing home for reasons that seemed convincing to their parents. The ADA (Americans with Disabilities Act) does not entitle the court to second-guess those decisions — even if the United States disagrees with them.”
