Susan Sullivan can't talk yet, but this baby has a mind of her own. Uninterested in crawling, Susan sits up straight and scoots madly around the family home. With her big brown eyes and tousled hair, she's apt to stop passers-by who coo at her as she and her mother, Molly, perambulate Audubon Park.
Molly Sullivan wants a full, happy life for her child. But, because Susan was born 12 weeks premature, Molly and her husband, John, need help to make that happen. Averse to using her mouth after eight weeks on a ventilator, 19-month-old Susan requires feeding therapy to learn how to eat. Meanwhile, her feeding tube gets in the way of crawling, something she works on with a physical therapist. An occupational therapist and a speech therapist round out Susan's team, helping her catch up with other kids in her age group. "We genuinely believe, if we're aggressive with treatment now, she'll be a normal kid by the time she starts pre-K," Molly says.
Until now, the Sullivans and families like them received help from EarlySteps, a program funded jointly by the state and the federal government. EarlySteps provides free intensive therapies to children ages 3 and under, regardless of family income. But starting July 1, the Louisiana Office of Public Health (OPH), which administers EarlySteps, plans to start charging families for the program's services. Families with incomes between 200 percent and 300 percent of the Federal Poverty Level -- $32,180 to $48,271 for a family of four -- will have to pay part of the cost for each hour of therapy their child receives. Those who make above 300 percent of the Federal Poverty Level will get no assistance. And under the new cost-sharing plan, even the poorest Louisianans will have to pay 10 percent of each session not covered by Medicaid.
For most families of children with developmental disabilities, that's too much, too soon. The children served by the program suffer from chronic disorders -- including Down Syndrome, cerebral palsy, spina bifida and autism. Helping these kids develop requires non-medical interventions that Louisiana does not require private insurers to cover. At $60 to $80 an hour, even a portion of needed therapies will add up quickly for moderate-income households. Those prices reflect a 25 percent reduction in fees already imposed by OPH as a cost-cutting measure on Feb. 1, after the agency recognized that it was in financial straits.
Budgeted at $28 million, the program currently serves 4,543 children at a cost of $38 million -- a shortfall of $10 million. Louisiana shifted the program from the state Department of Education to the Office of Public Health in 2003 after federal regulators found that the DOE wasn't reaching enough eligible children. OPH practically doubled enrollment in two years. It also increased the number of non-Medicaid children in EarlySteps from 20 to 50 percent, but the increased enrollment didn't generate extra funds. The new cost-sharing plan has been the subject of angry public meetings in Lafayette and New Orleans over the past month. OPH spokesperson Bob Johannessen says the plan is better than telling the feds that Louisiana simply can't afford the program. "We believe that the parent of a child with a disability is going to do whatever they need to do to get the child the services they need," says Johannessen, who points out that the program was designed to model therapeutic behaviors that parents could repeat in the home, not to provide a constant stream of therapist visits.
OPH clearly inherited a troubled program when it took over EarlySteps from the Department of Education in 2003 -- but it also helped make things worse. Formerly known as ChildNet, the program had worked with children in agency settings rather than in "natural environments" as required by the federal Individuals With Disabilities Education Act. OPH changed that, but failed to audit hours billed by service providers for home visits. OPH lacked crucial monitoring practices and cost controls, and also failed to do the math: You can't double the number of people you help without either adding more money or making the same amount go twice as far.
The proposed cost-sharing arrangement is a step toward fiscal responsibility -- but for many families, the cost is too great. The suggested scale places a much higher burden on families than in states such as Wisconsin, which exempts families below 200 percent of the poverty level from charges, or Texas, which charges families at that income level $25 a month. Other states start requiring nominal co-pays at 350 percent of the poverty rate.
Louisiana should explore similar arrangements. Childhood development, especially for children with difficulties, doesn't offer second chances. The cost of meeting those children's needs, however, won't go away. Many kids whose parents can't manage the new fee structure will soon be entering our public schools, where they will require even more costly care -- often when it's too late to do the most good. We can't afford to ignore them now.