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A Medicaid waiver program designed to help disabled children in Louisiana receive care at home may be moving in the right direction, according to advocates for the disabled, after the program had a rocky start and drew fire from the advocates.
The Children’s Choice program was to open at the start of 2001 but was delayed briefly because of questions from the Centers for Medicare & Medicaid Services. Designed for families caring for children with developmental disabilities living at home who have medical and other expenses, the program is to provide some community-based services and medical care for children up to age 19 who have disabilities. The state stressed at the outset that the program was designed for children with low to moderate needs and not for every child with a disability. An annual service cap of $7,500 was in the program design initially, but state officials now say they will seek legislative approval (and funds) to increase it to $15,000.
Federal approval of the waiver request for Children’s Choice was delayed because of concerns expressed about provisions in the application process under which families who choose to participate in Children’s Choice would be taken off the waiting list for waiver services. That was a particular sticking point for advocates for the disabled, and state officials now have said they are withdrawing that requirement.
Once the program was approved, it moved slowly in actually delivering services to individuals. With a goal of reaching 800 families, state officials said in early November 2001 that there were 219 children enrolled, with 88 of them actually receiving services such as alterations to make homes and vehicles more accessible, respite care to give parents a break, and personal care attendants.
Kay Marcel, a parent of an adult disabled child and the statewide service coordinator for Louisiana Citizens for Action Now (LaCAN), tells State Health Watch that advocates started going public in the fall of 2001 with their concerns about how few people actually were receiving service. "They were funded for six months from January to June 2001, and we hadn’t heard of anyone who was receiving services. We wanted to know where the money was going and what happened. The department began to hear our concerns and has been responsive."
State Department of Health and Hospitals Secretary David Hood tells State Health Watch that his agency has been listening to the concerns expressed by the advocates and is working to improve the program. "We’re going to the legislature with a request that the cap be increased, perhaps to as much as $15,000 a year instead of $7,500. We’re hoping such a change will encourage more families to find the program attractive and enroll."
Ms. Marcel says one quirk in the cap is that of the current $7,500 limit, $1,500 is mandated for case management for each client, leaving only $6,000 for direct services. "We’d like to see that case management fee individualized," she says. "Case management is a good thing, but not every child needs $1,500 worth of it. Some may need more and others less. Many parents tell us they know more about their child’s needs and how to meet those needs than the case managers. There should be more flexibility in the case management fee."
Mr. Hood says the agency is hoping to become more flexible in that area as well as in eligibility, all changes he hopes will make the program more attractive to parents and persuade them to enroll.
Opposition from advocates, he says, has been one factor in the slow and low enrollment. "There has been a coordinated effort by some advocates to convince families that Children’s Choice is not a program that will meet their needs," he told the Baton Rouge Advocate. "It certainly will help meet the needs of some families. It never was designed for all families."
His department designed Children’s Choice, he says, because it has a limited amount of money to spend and has done a good job of providing services but wanted to help the lengthy waiting list move more quickly. "We thought that if we could enroll people in Children’s Choice, the waiting list would move more quickly. The length of the list was not acceptable to the families or to us. We thought that those who were not served by Children’s Choice still would be helped because they would be able to move ahead on the waiting list."
Mr. Hood says the department did not want a one-size-fits-all program. "We want families to use Children’s Choice if it meets their needs. If a family’s needs increase, we will provide the additional services. They will not lose their place on the waiting list, and we will provide the additional services as quickly as we can. We’re continuing to work with the families and advocates. We believe this is a good program, and we’re trying to make it work."
Ms. Marcel says advocates are "very pleased" with the attitude shown by the department in working to make changes in Children’s Choice. She says she had been involved in early discussions about the program and expressed concerns then about the adequacy of a $7,500 cap. Thus, the decision to work to raise the cap is an important one for her.
There also have been communications problems, Ms. Marcel says, so that some parents may have understandings about the program that are not accurate. She says Mr. Hood has made a commitment to improve communication within his agency and between the agency and parents.
"I’m cautiously optimistic that there has been a turnaround," she says. "It’s still not clear what the department will do to improve the eligibility determination process and speed it up. We know that sometimes families are missing appointments and do other things that slow the process, but we think those cases are minimal. We’re going to continue to work with the department to identify problems in eligibility determination and how they can be corrected. It seems that a new wave of constructive dialogue has opened and we’re going to work together to get this program going the way it should be," Ms. Marcel says.
[Contact Ms. Marcel at (337) 367-7407 and Mr. Hood at (225) 342-9500.]