When Anubis Day was 5 months old, child welfare authorities say, his father “swung” him by his legs and shook him violently. Anubis was left blind, seizure-prone and dependent on a ventilator to breathe. From then on his world would mostly consist of a room in a nursing home.
Last fall, under intense pressure from the U.S. Justice Department to free children like Anubis from institutions, state health administrators called the boy’s mother. The state, she was told, was willing to provide in-home nursing care and other services if she wanted to bring Anubis home and raise him herself.
Her answer? The mother “does not want us to ever, ever call her again about her child,” a state health employee wrote following a Sept. 17 conversation.
Anubis and scores of other Florida children are at the center of a bitter fight over the state’s treatment of severely disabled and medically complex children.
Florida’s Agency for Health Care Administration insists that children like Anubis are getting the best care available — and in the setting their parents want. The Justice Department says the kids would be better served at home or in community-based care, not in geriatric nursing homes — but that the state has squeezed funding for in-home care so severely that parents have no choice but to institutionalize their children.
Nursing homes don’t mind, because the state, while cutting back on in-home care, pays more than $500 a day to the institutions for each child.
What do parents want? AHCA insists it reached out to the parents of all the roughly 230 children in nursing homes and that the overwhelming majority declined an offer to help move their offspring back home. But AHCA’s own records suggest a large number have effectively abandoned their kids, seldom, if ever, visiting — many did not call the agency back — and are content to allow the state to call the shots.
Is that what’s best for the children? Should an independent arbiter be assigned to look after their interests?
A further complication: Many of the children, like Anubis, are where they are because they were shaken or abused by the very parents who now want them to remain there.
‘Ungodly cruel and expensive’
Richard Gelles, dean of the School of Social Policy and Practice at the University of Pennsylvania, as well as chairman of child welfare at the school, called the institutionalization of medically complex children “ungodly cruel and ungodly expensive,” and added that the parents of such children still have a responsibility to oversee their youngsters’ care, and maintain a relationship.
Of course, there may be a host of reasons for a parent’s failure to maintain contact with a disabled child: no car, lack of money for transportation to sometimes-distant nursing homes, demands raised by other children. But the child welfare system is not about affixing blame, experts say. It’s about protecting children.
One “parent” — the state’s foster care agency — has taken action. The Department of Children & Families, which bore parental responsibility for more than 30 severely disabled or frail foster children when the controversy began, has in recent months relocated nearly half of them from nursing homes into specialized foster homes for medically fragile children, where they are integrated into their communities.