Every child confirmed to have one of 13 disabilities--ranging from autism or learning disabilities like dyslexia to physical or sensory impairments--is administered an Individualized Education Plan (IEP) catered to his or her specific needs. An IEP team that includes the child's parent, a general education teacher, a special education teacher, a school representative and others with special knowledge of the child or disability creates the plan and meets annually (or more, if needed) to discuss the student's progress.
What The Laws Lack
Taking care of her now 23-year-old son, who has several physical and learning disabilities, consumed much of Carol Berman's time--so much so that the former market researcher at a large brokerage firm had to give up her job. His disabilities, and the attendant physical therapy, fights with health insurance companies and "the maze of education laws" had to take precedent. It was a financial blow to her family on top of everything else.
"The basic tenet of the law, that each child is entitled to a 'free appropriate education in the least restrictive environment' becomes tricky," she says. "To a parent, 'appropriate' means 'best,' which is not necessarily the case for the school districts."
She hit several roadblocks. The general policy of inclusion, when special needs children and mainstream kids share a classroom, made it difficult for her son to keep up with the advancing curriculum. She also felt that the advisers who recommended services did so based more on funding and statistics than to the specific strengths and weaknesses of her son.
Ellen Notbohm, author of the best-selling Ten Things Every Child with Autism Wishes You Knew, agrees that there are "100,000 interpretations of the law." She tells parents that constant communication with the school is their best bet and suggests they "look for a school that will see the child as a whole child and not as a baggie of broken parts." But the power--and ultimate responsibility--lies with the parent.
A Second Job
Marilyn Haese, mother of two sons, ages 19 and 17, both diagnosed with dyslexia and AD/HD, runs her own PR agency, Haese & Wood, in Century City, Calif. She is the first to admit a working mom with special needs kids must devote a Herculean amount of time to their education. It becomes a second job.
Every school year she has had to reintroduce her children's ever-changing needs to the school--classroom teachers, yes, but also the librarian, gym teacher and even the principal. Their report cards had measurements that changed and became harder to decipher as the boys aged. But her biggest obstacle has been her battles against her children's IEP teams.
Haese discovered that she had to champion what she knew was in the best interests of her boys. When her older son was in elementary school, for example, he was moved from a mainstream school to a special ed school. Concerned about the social and educational ramifications of extracting him from a "normal" setting, she moved him back to public school--after much ado and against adviser recommendations. He's now in college and she believes the transfer made all the difference. She now tells other parents to be proactive, address problems early and to be the voice your child doesn't have.
Early on Chantai Snellgrove of Vero Beach, Fla., realized she was naïve to blindly trust the school system and has been battling it ever since. "It's very frustrating," she says. "If you don't know the right questions, you won't get very far." As the mother of a 12-year-old daughter with language and learning disabilities, she's had to immerse herself in the research, keep meticulous records and negotiate fervently with an "intimidating" team of professionals to ensure her daughter gets what she needs.
Advocating for her child was so complicated and time consuming that, once Snellgrove learned the ropes, she found a new career--helping others embarking on the same path. Last year, she founded the online magazine, Parenting Special Needs, a resource she says she wished she had from the start.
Ernst & Young's Blasko admits that she has also applied her business acumen to IEP meetings. "Everything is a negotiation, just like work," she says. She got into a boardroom-style broil recently. When Katie, her 15-year-old, was placed in three job skills training classes and had no time in her schedule for science, Blasko refused. Katie will be taking biology in the fall.
What's Next
Rich Robinson, executive director of the Federation for Children with Special Needs, a services and support organization for parents, says he keeps an eye on the controversial issues surrounding special education. Full federal funding, he says, is the "politically hot debate."
This year, it seems that special ed will be granted its fair share. Programs falling under the Individuals with Disabilities Education Act (IDEA) are set to receive $12.2 billion as part of the American Recovery and Reinvestment Act (ARRA). Half was given out in April and the other $6.1 billion will be released in September. The funds, in part, will go toward retraining displaced teachers to specialize in special education.
In other words, it appears that the federal government is looking at special education to help stimulate the economy. To many of these working mothers, shifting funds sounds like a sigh of relief.
Health professionals recommend that parents/ caregivers bring this notebook to all medical appointments, therapies, care conferences, on vacations, etc. Health professionals can encourage the use of these notebook by either having them available at the first office visit, upon discharge from the hospital or in the waiting room on a resource table. This notebook should be a team responsibility. Office staff should offer families assistance in filling out the various forms. Medical offices can copy visits, check ups, immunization records, specialist reports, clinical pathways, and give them to families to insert into the notebook.