State wants parents of preschoolers to pay larger share Monday, October 09, 2006 • BY SUSAN K. LIVIO • Star-Ledger Staff Tara Banuls of North Arlington has two disabled children and runs a support group for parents like herself, who are raising children with autism and other developmental disabilities. She described some families as "desperate" for any help they can find. "It costs so much more to raise a special-needs child -- financially and emotionally," Banuls said. It's about to get even more expensive for many middle-class New Jersey families with special-needs children. With demand for its services at an all-time high, the state's Early Intervention System, which prepares children for school, is going to ask parents to pay a bigger share of the cost. State officials say they've proposed a sliding fee scale that has met the approval of an advisory committee comprised of parents, pediatricians, educators and government officials. Fees are based on how often the child receives therapy, the qualifications of the professional providing it and family income. The state now charges families based solely on their income, regardless of how much they use the program, Deputy Health Commissioner Eddy Bresnitz said. "The state has crafted a reasonable approach to addressing the issue," he said. "There are families who can afford these services." The proposal has alarmed some advocacy groups and parents who say they won't be able to afford the help their children need -- particularly those facing lifelong disabilities such as autism. Banuls' 2 1/2-year-old daughter, Bella, receives 10 hours of therapy a month from the state. There's no denying how important these services are, Banuls said. "Early intervention is the best thing that could happen to these children," she said. "My daughter's speech was nothing, and ... now she has flourished so much. It's the brightest spot in my life. I get to hear one of my children speak." David Celentano of Lyndhurst feels lucky -- his son Santino will age out of the program when he turns 3 in December, before the state will be ready to raise the rates. Otherwise, he suspects his fee would top $1,000 a month. Santino, diagnosed with autism in March, receives about 30 hours of therapy a month, and it has vastly expanded his vocabulary. "I think this will have a bad effect on new parents," Celentano said. "They are getting the news they have a special-needs child, and along with that stress, there's this?" State health officials argue the program is running too deep in the red not to ask parents to contribute more. Over the last six years, the number of babies and toddlers identified by physicians as needing help speaking, moving and learning has nearly doubled, from 4,760 in 2000 to 8,732 children, Bresnitz said. At the same time, funding from the federal government has dried up, requiring the state to fill the gap. Nine years ago, the federal government paid nearly 60 percent of all costs of the program serving children under 3 years old, Bresnitz said. Now the state is paying 70 percent, picking up $78 million of the $107 million program's expenses this year, said Assistant Health Commissioner Celeste Andriot Wood. Last June, the program ran out of money and the department borrowed $2.5 million from a federal health grant to pay the bills until a new state budget passed in July, Bresnitz said. Some 4,200 families will continue to pay nothing because they live close enough to the federal poverty level. The remaining 2,900 families will be billed according to the proposed sliding fee scale. Some of the agencies that provide the care also are weighing in against the proposal. "It's very possible service plans may end up getting written not based on the true needs of the family but on what the family can afford," Lowell Arye, executive director of Alliance for the Betterment of Citizens with Disabilities said. "If it does, there will be a negative effect on the child, which may mean additional services are needed later in life." Many say it's time for insurance companies to contribute. Seven states require some coverage for early intervention services, including Massachusetts, which provides for $5,000 of therapy a year, said Cynthia Newman, the regional director of the Mid-Jersey Cares Regional Early Intervention Collaborative, a nonprofit group funded by the state to coordinate care in six central New Jersey counties. "Why is it these other states have figured it out?" Newman said. "I'm not saying the insurance industry should do it all, either, but there could be a better partnership." Even with higher fees, the amount collected will only generate $6 million a year, doubling the $3 million collected from families last year. Early intervention is facing a $13 million deficit when the fiscal year draws to a close in June, Adroit Wood said. Newman said nobody wants to ask parents to contribute more, but she feels the state is trying to be fair. Other states have limited enrollment by including only the most severely delayed kids. "It's a tremendous program, but it's not a cheap program," Newman said. "I'm not thrilled (about the rates going up), but I don't know how else to save the system. The state is holding public hearings at Rowan University in Glassboro Wednesday and at Cerebral Palsy of North Jersey in Maplewood Thursday, and it is accepting written comments on the proposal until Oct. 30. Consult the state's Web site for more information, at http://www.state.nj.us/health/fhs/eis/index.shtml. © 2006 The Star-Ledger. Used by NJ.com with permission.