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Fla. Children With Severe Disabilities Relegated to Nursing Homes

UPDATED

A U.S. Department of Justice review of state services for children with disabilities in Florida found the state is violating these children's civil rights by institutionalizing hundreds of them in nursing homes, although they could live at home with their families with the right supports and services.

In a letter this month from Assistant Attorney General Thomas Perez, the Justice Department said that many of the children who enter these facilities are separated from their families for years, and the state's policies and practices put even more children at risk of being placed in the same institutional settings.

At issue are children who are protected under the Americans with Disabilities Act who should be given the opportunity to live in the most integrated setting. The Justice Department found that Florida's practices provide for few opportunities for children in institutional settings to return to their families. Some parents told the federal agency that they want their children living at home but state policies keep that from happening. The Justice Department says Florida has cut spending on in-home services and community-based services for people with developmental disabilities, while expanding facility-based care.

The agency interviewed a number of stakeholders to reach its conclusions.

"They informed us that the state's administration of its service system is driven by considerations other than the health, safety, well-being, and development of the children being served, and as a result, families that are able, with appropriate supports, to care for their children at home may be stretched to the point of admitting their child to a nursing facility or other institutional setting," the 22-page letter says.

In a pair of statements (found here and here), Florida's Agency for Health Care Administration defended itself, denied the findings, and said the state "has a comprehensive medical service package that can accommodate any family who chooses to have their child at home."

"The decision of where a child receives care is up to the parents, in conjunction with the child's doctor," the agency said. "The agency will never interfere with a family's choice for the location of their child's care. The Agency uses a professional, rigorous, federally approved, quality-control system to ensure every family receives the appropriate level of care for their child."

But the Justice Department found that one family had to sue to get home health services for their son, who has medical complications because of a near-drowning incident. Until they sued, the family was denied the amount of prescribed hours of care at home for the boy. While the state may say a case like this one is unique, the Justice Department found several large nursing homes across the state that serve hundreds of children with disabilities.

The Justice Department outlined a litany of recommendations to address the situation, and it noted that Florida rejected about $40 million in federal grant money that could pay for some of the costs of caring for these children, because the money is related to the new federal health-care law. The state denies that this money would have been available to work with the children in question. The feds also said nursing homes have been encouraged to serve more children and provided with money to expand their capacity to do so.

"During our investigation, we found no evidence of a comprehensive, effectively working plan designed to reduce the state's reliance on nursing facilities for individuals in this population," Perez wrote. "Instead, children and adults languish for years in nursing facilities without meaningful opportunities to transition to more integrated settings."

UPDATE: The Florida health agency involved in this issue said it will visit hundreds of the medically fragile children living in geriatric nursing homes and talk with parents to see if they felt forced to place their children in these settings, The Miami Herald reports.

Liz Dudek, the secretary of the state Agency for Health Care Administration, said at a press conference Wednesday that her staff has been told to speak with "every parent" of a child in a Florida nursing home to determine if an institutional setting "is the best decision for their child."

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