Monday, May 21, 2018
Editorials

Help for parents of the medically fragile

After a rash of bad publicity arising out of severely disabled children being put into nursing homes over parental objections, with some ending up dead, Florida's health care agency is changing the way it deals with families. Rather than leave it to parents of medically complex children to find their way through the state's bureaucracy, the Agency for Health Care Administration will assign each child an intermediary who will guide the parents through available options. The hope is that by giving parents a point person for help accessing services, more will be able to keep their child at home or in community settings. It's a positive step toward opening up communication that too often has been lacking or unproductive.

The implementation of the "nurse care coordinator" program was prompted by stories like that written by the Miami Herald's Carol Marbin Miller about 14-year-old Marie Freyre. Marie died in 2011 within hours after child welfare workers sent her from her Tampa home to a nursing home five hours away. Her mother vehemently opposed the move. Miller also reported on the death of teenager Bryan Louzada, who was placed in a nursing home after his mother was denied the at-home nursing care she repeatedly requested. Louzada was one of five medically fragile children to die in Florida nursing homes in the last half of 2010.

These individual stories of bureaucratic neglect and indifference come as the U.S. Justice Department is threatening to sue the state if it doesn't provide severely disabled and medically fragile children the care they need at home and in community-based settings as required by the Americans with Disabilities Act. The Justice Department complains that Florida warehouses children in nursing homes designed for the elderly — there are about 220 children in these settings statewide — where some have been denied appropriate socialization and education services.

Liz Dudek, secretary of AHCA, responds that the children in Florida's nursing homes are there due to their parents' wishes. But that assertion is at odds with documented cases of parents desperately seeking to have their children at home but being denied the nursing resources necessary. The state hides behind its definition of "medical necessity" to refuse parents sufficient hours of in-home nursing care. Parents with children at home who have been provided professional nursing help constantly worry that AHCA will cut back those services.

With so much negative attention, AHCA is promising change. Already, parents of about 200 Medicaid-eligible children in nursing homes should have received letters regarding the nurse care coordinator program, according to AHCA spokeswoman Michelle Dahnke. Follow-up phone calls by the coordinators are to begin next week. And soon the agency hopes to expand the program to all the state's families with medically complex children. If the coordinator acts as an advocate helping parents obtain appropriate levels of at-home and community-based services for their children, it should lead to real change benefitting families in need. But the Justice Department should not stand down. Federal oversight is still warranted to ensure that the state makes good on giving parents real choices for caregiving and provides the assistance they are entitled to by law.

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