For children with disabilities, even preschool should come with detailed plans and goals

From Medill Reports:

For Gillian Marchenko, sending her daughters off to preschool means more than picking out their outfits and making breakfast. It involves hours of meetings with administrators, teachers and outside therapists. And it means that Marchenko, a writer and mother of four who lives on Chicago’s North Side, has found herself on the front lines of her daughters’ education.

Two of Marchenko’s four daughters have Down syndrome. The girls, Polly and Evie, are three and four years old, respectively.

Marchenko’s daughters are among the more than 37,000 children between ages 3 and 5 who receive special education services in Illinois. The number of children served statewide has grown since 2004, when about 34,900 students received special education. However, the number of six to 21-year-olds receiving services has declined in recent years.

The Illinois State Board of Education attributes the increase to disabilities being identified at younger ages, including in infants, as well as increased cooperation among Head Start, pre-kindergarten and child care programs.

Mandated under the federal Individuals with Disabilities Education Act of 2004, an Individualized Education Program provides detailed and personalized curriculum for students with disabilities or special needs.

The programs and services for children with disabilities are funded by states and local school districts. However, a provision in the American Recovery and Reinvestment Act of 2009 added $12 billion in funding to the education act, which provides services to about 6.5 million children nationwide. The money specifically serves children with disabilities and offers a hand to cash-strapped districts that are responsible for the costs of special education.

Rebecca Benson-Bates’ daughter, Samantha, is one of those children. At 4, Samantha, who has Down syndrome, currently attends preschool. The easy part, Benson-Bates said, was enrolling her daughter in school. After that, she faced piles of paperwork and a series of meetings to prepare both parent and child.

“They ask, ‘what is the goal you want to reach for the child? What achievements in three, six or nine months?’” Benson-Bates said.

These goals form the bones of the education plan, and they’re often referenced during the school year. Samantha’s goals are designed to prepare her for kindergarten, which her mother hopes she will attend next year.

One of Samantha’s goals, her mother said, was to be able to take off her coat and hang her backpack on a peg every morning. She has already achieved that, her mother said, and her future goals include pedaling a tricycle, threading beads on a string and answering questions that use the word “who.”

But creating goals requires hands-on work with schools, and sometimes disagreements occur.

For Marchenko, this happened when the school wanted her daughter Polly, who is nonverbal, to learn a picture system to communicate with teachers. However, Polly already knew more than 90 signs in American Sign Language. Marchenko didn’t want to confuse her daughter by switching to a new system.

“They were telling me this is the way we do it, regardless of how you’re child is, because that’s the way it’s always been set up,” she said. Marchenko pushed back, and the goals were eventually rewritten, she said.

The possibility of major disagreement is a reason Marchenko always brings someone to support her to school meetings, whether it’s her husband or the girls’ therapist.

Still, she stays positive and focuses on cooperation.

“If I go into it with an ‘us-against-them’ attitude, then it’s a fight and I’m on one side and the team’s on the other, and that’s not in the best interest of my kid,” she said.

Diane Kush, the principal of Chicago’s Stuart G. Ferst School, a therapeutic day school for severely disabled elementary and high school students, said that she’s familiar with the tension between parents and schools over Individualized Education Programs.

She said parents sometimes want to set goals for their children that are not realistic for their current abilities.

“There’s a lot of things in between the dream of a child, the reality of the child and the potential of the child,” she said. “I think all parents and schools operate somewhere in those three things.”

While individual plans focus on monthly and yearly goals, the federal program also requires educators and parents to look further ahead. By age 16, all students with disabilities must have a transition plan, which sketches out what will happen when they graduate from school or are no longer eligible for services.Kush said that the long-range plans try to incorporate both the dreams of the child and their current abilities.

“You don’t say, ‘I want to be an NBA basketball player,’” she said. Instead, a plan for a young person who likes sports might identify careers that involve sports, such as taking tickets at Soldier Field or working for a laundry service that washes athletes’ jerseys.

“You ask, ‘what ability do they have that might be integrated into their dream so that they get close to it?’” she said. “And that’s hard.”

For now, Marchenko focuses on the present and acting as an advocate for her two daughters.

“If I’m not that person, who will be?” she asked. “Who else will care as much as their parents?”