Trying to prevent what one official described as "white-knuckle moments" for families, the state plans to change the way it determines the home-based services that will be provided to children with highly complex medical needs.
The proposed changes, which will be published Monday, include assigning care coordinators for all children who receive private-duty nursing services through the Medicaid program. The state Agency for Health Care Administration says the move is designed to make sure children have full access to services at home and in their communities.
Also, the proposals involve using teams, including parents, doctors and other health professionals, to try to reach agreement on the services needed to keep children at home. That could help reduce hearings about issues such as how many services children should receive and the proper amount of hours --- situations that state Medicaid director Justin Senior said have created "white-knuckle moments" for families in the past.
"We're trying to change it so it is a more collaborative way of getting to the right number (of services or hours),'' Senior said Friday.
He said families sometimes have issues that contribute to the need for services but might not show up in a check of their children's medical records. For instance, parents' work schedules or medical conditions could affect their ability to care for children.
The proposed changes, which have to go through a rule-making process, are expected to take effect within three months. They would affect about 1,600 children a year who have medically complex conditions that require extensive amounts of care to allow them to live at home.
The state's handling of such children has received heavy scrutiny in recent months, after the U.S. Department of Justice issued a report that alleged youngsters were being unnecessarily placed in nursing homes. The Department of Justice has requested changes in the system of caring for medically fragile children and has threatened to take legal action against the state.
Also, a potential class-action lawsuit is pending in federal court in South Florida on behalf of children who have been placed in nursing homes or who are "at risk" or being placed in the homes. The lawsuit and the Department of Justice report alleged possible violations of the Americans with Disabilities Act and questioned whether the state has done enough to help families get services so children can live at home.
"Many children entering nursing facilities in the state are unnecessarily separated from their families and communities for years,'' said the Department of Justice report, issued in September. "The state's policies and practices also place numerous other children who have medically complex or medically fragile conditions at risk of placement in nursing facilities and other institutional settings."
AHCA officials have adamantly disputed the Department of Justice findings and are fighting the lawsuit. Senior said AHCA plans on making the newly proposed changes, such as assigning care coordinators, regardless of what happens with the Department of Justice.
Under the proposal, an AHCA contractor, eQHealth Solutions, Inc., would provide care coordination to children who are Medicaid beneficiaries and are eligible for private-duty nursing, according to the agency. The care coordinators would be licensed nurses or social workers and would work with a maximum of 40 children.
The care coordinators would make monthly contacts to get information about the children's conditions and also would pull together the teams every six months.
Those teams would develop plans for the services that would be provided. If a team cannot agree on whether a service should be provided, a physician would review information gathered by the team and help make a determination.
The proposed changes also would address a series of other issues. As an example, Senior said AHCA wants to make clear that it does not take away private nursing services to force children into medical-daycare programs.
Jim Saunders reports for the News Service of Florida.
