When Sarah Perlstein was born in 1984, there was a problem. She suffered oxygen deprivation at birth and had to spend a month in the hospital. She has a permanent hearing loss and other related problems as a result.
Once Sarah came home, her mother, Linda Colson Perlstein of Glen Ellyn, struggled with feelings of isolation, confusion, and anxiety about her child`s future.
”I didn`t know where to find help for a baby with hearing loss, and I spent hours and hours on the phone,” said Perlstein. ”I could have used the services House Bill 954 provides.”
Perlstein, now a special education professional and state-designated ambassador who helps educate the public about services for children with disabilities, is referring to the Early Intervention Services System Act, signed into law in September by Gov. Jim Edgar.
The bill`s aim: To find and help children with special needs as early in life as possible, and to turn a disjointed assortment of public and private service providers into a system parents can use and understand easily.
In the future, parents should be able to make a single phone call to their local school district and be directed to appropriate services.
Previously, intervention services such as therapy, special instruction and family counseling were provided at no charge for eligible children ages 3 to 21, with services for younger children available on a sliding fee basis according to need. The new law extends services to start at birth.
Expected cost: $4,000 per year per eligible child for an approximate total of $225 million per year.
But because of the state`s money problems, most parents will continue to pay for the services provided to their babies for some time to come. Right now, experts say, the new law is mainly good intentions, and it`s important to know that the state stopped short of making early intervention an entitlement program, such as Social Security or public education.
Even without money, the State Board of Education, as the lead agency in the scheme, can do much to find and screen children needing help and coordinate services of the many agencies involved. But the hope is that during the next five years, money will be found to fund more extensive services throughout the state.
Despite the program`s high price tag, many are convinced that such programs are a bargain, saving many times their costs down the road.
Legislators cite the Perry Preschool Study in which a group of children who were at risk for developmental delays were given the benefit of attending preschool. The children who attended preschool are now twice as likely to be employed or still in school. The group also needed 50 percent fewer special education services through high school, has a 40 percent lower arrest rate and a 42 percent lower teen pregnancy rate than a group that didn`t attend preschool. Economic returns were estimated to be seven times the cost.
One problem is that the new law extends services that many parents didn`t know were available in the first place.
First-time parents, or those with little community contact, are often unaware of programs and services. Therefore, the state has mounted a vigorous public information campaign. Information is distributed at hospitals, doctors` offices, schools, any point of contact with parents.
Ambassadors such as Perlstein have been chosen to act as an informal information resource for the neighbors, friends and associates.
Who are eligible children? Children with obvious disabilities such as cerebral palsy or Down syndrome qualify, but so do children at risk.
This vague category can mean a child with a teen mom, low birth weight, a premature birth, a cocaine baby or one who simply shows signs of slower than normal development.
A child with cerebral palsy might well go to Du Page Easter Seals in Villa Park for therapy, where the adage ”play is a child`s work” was never truer.
Most of the kids with physical disabilities getting therapy there are smiling and laughing. In fact, the therapy looks a lot like play.
”When dealing with children,” said director Jim Johnson, ”you have to make it fun or they quickly lose interest.”
In the hall, lined with walkers and other such aids that are available on loan, a little girl, her therapist following behind her on a rolling stool, is being encouraged to walk on her own. Today, she`d rather chat with passersby, but in the end, she takes off down the hall with a wobbly gait.
Johnson said the biggest plus of the new bill is that ”it will help organize the providers. Not all areas of the state are as fortunate as Du Page County. The earlier a child receives services, the less he`ll need in a lifetime. It helps the child cope and reduces expense.”
The Ray Graham Early Intervention Program in Burr Ridge serves kids with a variety of conditions, from Down syndrome to cerebral palsy to mild delays. The childhood programs are just part of a constellation of services for the disabled offered at the center, set on a rolling acreage with nature trails and stables in an affluent neighborhood.
Sue Iacovelli, director of the program, is the mother of five, the youngest of which has Down syndrome. Her first contact with the center was as a parent needing help for her child.
”Without Ray Graham, I wouldn`t have gotten the support from other parents. And I would`ve had to seek out private help for all the different areas individaully. In our program, we address the whole child,” Iacovelli said.
Therapy here is in small groups, and parents of the younger children participate some of the time. In one group, a circle of kids is doing a honky tonk version of patty cake. In another circle, a big ball is being lobbed around, with the itty-bitty pudgy arms getting a great deal of help from the moms.
Maryanne Dzik heads up a similar program, Little Friends Parent-Infant Program, in Lisle. The setting, an adapted space in an office building, is a little less spiffy than Ray Graham`s, but the program is comparable.
Sandy Kollmorgen of Naperville takes her daughter Maggie, who has Down syndrome, there for therapy.
”If you have a child who doesn`t have a handicap, you don`t really think about their play, but here, they teach you not to take it for granted,”
Kollmorgen said.
Most children enjoy pushing carts when they`re learning to walk; Maggie`s cart was specially adapted with weights.
Dzik thinks the momentum for coordinating and delivering services for kids with disablities is growing. As head of the Birth to Five Task Force for Children with Special Needs, she notes: ”Two years ago there were six of us on the task force. Now there are 20 to 30 people at all our meetings.”
While several babies are being rolled on gigantic inflated balls, Dzik explains how Little Friends helps families adjust to the public school system the special education children enter at age 3.
”We`re in contact with the appropriate school district. We try to make the transition easier. We accompany the parents to (meet with) the public school staff, which is usually a very intimidating and overwhelming experience. There might be eight to 10 staff people at the meeting. It`s probably the most stressful thing for a parent, next to initially finding out about the disability,” Dzik said.
”We also invite school district people to come out and observe a child in this setting,” she said. ”Parents have great difficulty relinquishing a child to the system. Parents of these children feel that we expect things of them we don`t expect of normal children. Like busing, for example, which can be very traumatic.”
One of the people who takes over from Little Friends is Georgia Peceniak, special education coordinator for Naperville District 203.
”Once children are 3, we do a screening. Because of the tremendous number of children in the community that age, we do a screening every month,” she said.
Once a child has been identified as having special needs, a meeting is set up with the parents and a program is set up for the child.
School districts handle special needs kids in different ways. Some administer their own programs. Others contract some services out to other agencies.
