If you thought school was a challenge when you were a student, just wait until you see how difficult it can be to approach the school as a parent. And for the parents of children with disabilities, getting your child the best available education is — like everything else — quite a bit more complicated.
You'll have to be your child's advocate to ensure that the local school is prepared to meet your child's unique needs. But first, you'll need to learn the rules of the game.
The Individuals with Disabilities Act (IDEA) is a federal law establishing a nationwide minimum standard and requiring public school districts to provide a free appropriate public education (FAPE) for all children with disabilities, in the least restrictive environment (LRE).
The primary tool for accomplishing this is an Individualized Education Plan (IEP) for each student with special needs. The IEP is basically a contract, written and signed by the parent and the school, covering virtually everything from how the child will get to and from school, to how the school will meet the child's academic, social, athletic and medical needs.
The IEP can spell out whether a child needs physical therapy during the day, a computer, a classroom aide, special transportation on field trips, assistance in the lunch room, extra time to complete assignments, access to elevators and ramps, and anything else needed for a complete school experience. Once the school and family agree on which of these "supports" are required, the school district must provide them.
Sounds simple enough, right? If not, have no fear. Other parents have tackled the same challenges you're facing, and not only did they live to tell the tale, they'd like to help you do the same.
But where do I start?
The good news is that information isn't hard to find. The National Information Center for Children and Youth with Disabilities (NICHCY) is a good place to start; call (800) 695-0285 or go to www.nichcy.org. The center offers a comprehensive question-and-answer publication — at no charge — that provides up-to-date information about the IDEA, as well as a starting point for finding the regulations that cover special education in your state.
The not-so-good news, however, is that the NICHCY publication regarding the IDEA is about 35 pages long, and one state's downloadable guidelines (Massachusetts) for the development of an IEP runs an additional 27 pages. At this point, it might not be a bad idea to get a really big binder to help you keep your paperwork in order.
Just when you think you can't stand the sight of another acronym, help arrives in the form of your local Parent Advisory Council (also known as Parent Advisory Committee, or PAC). Don't let the acronym fool you. These folks aren't bureaucrats — they're people just like you, parents who've been through the process that you're just beginning. Rick Orr of Saegertown, Pa., knows exactly how complicated the IEP process can be. His qualifications?
"Let's see, I have an 18-year-old son [Kevin] who has Duchenne muscular dystrophy. I spent 34 years as a music instructor, I now work with disabled children as a music therapist and I have a granddaughter who's blind. I guess you could say I've seen a few IEPs in my day."
One of Orr's proudest accomplishments as a member of his local PAC was helping Kevin's school develop a Circle of Friends program, allowing both disabled and nondisabled students to share activities from parties to plays to ittsburgh Pirates baseball games. Kevin's Circle of Friends (KCOP) has been together for seven years.
But that's by no means the full extent of Orr's work with the parents' council.
"Most people, especially if they're new in the process, don't realize that you can take other people to the IEP team meetings," Orr says. Some parents bring medical representatives, fellow parents, friends or therapists.
"These meetings can be pretty intimidating, which is why I also do advocacy. You don't have to do this alone."
Doug Atkinson of Michigan says he was invited to join the PAC for his intermediate school district during an IEP team meeting regarding his autistic son. "I thought they should've asked my wife," he says with a chuckle.
"She's the one who did most of the early legwork, once our son was diagnosed." Now in his second year, Atkinson speaks proudly of the council's new Pre-Primary Impaired program, which is designed to provide early intervention for children at preschool age, and the role of his PAC.
"Our primary goals are to advocate for parents, and to act as a watchdog to ensure that the schools adhere to the district's special education plans." He adds that PAC members are often invited to attend IEP team meetings to act as parent advocates.
The NICHCY publication defines special education as "instruction that is specifically designed, at no cost to you as parents, to meet your child's unique needs." If the issues are clearly spelled out by law, and you have a written contract (the IEP) with the school that addresses the specific needs of your child, everything should be smooth sailing, right?
"Some educators want you to believe that they're the trained professionals, and you're 'just' a parent," says Orr. "But the fact is that no matter how much they know about special education, you're the expert when it comes to the needs of your child."
Suzanne Peyton is the executive director of the Massachusetts Parent Advisory Council (MASSPAC). Starting as a new parent with her local PAC in Sharon, Mass., Peyton has expanded the Sharon parents' council into a statewide PAC network that not only offers an extensive resource library and an outstanding Web site (www.masspac.org), but also actively lobbies the Massachusetts Legislature concerning bills addressing special education issues.
In addition to lobbying and advocacy efforts, the Sharon PAC facilitates support groups and workshops covering disability-related topics.
"One of the neat things we've been able to do is to offer educators who attend our seminars points that count toward the professional development requirements for their ongoing certification," Peyton says. "Now we find that educators make up around 50 percent of the attendees at our workshops. This gives parents and teachers a chance to develop relationships with each other in a nonadversarial environment. As a result, they each have a better understanding of what the other side has to deal with, and they become more comfortable with the issues — and each other."
Budgets and politics
"Our kids can be real budget busters," Peyton admits. "The IDEA requires that schools provide a free appropriate public education. But while most states provide up to 54 percent of the necessary funding, the feds have yet to kick in the 40 percent they promised."
A recent National Public Radio report suggests that the federal government provides less than 13 percent of the cost of compliance with the IDEA provisions. As a result, most schools routinely exceed their annual budgets for special education, which can put quite a strain on the relationship between parents and schools.
Carol Jennings of Columbia, S.C., has a unique perspective on the finances of special education.
As a 21-year veteran speech-language pathologist, Jennings is a member of her school's IEP team, working to assess the special needs of students with communication disorders. As the mother of three, including two children with spinal muscular atrophy, Jennings has also developed IEPs as a parent.
"My children have really helped me with my career," she says, with just a trace of irony. "Because of them, I'm the one on the IEP team that really knows how the parents feel."
As an educator, she also understands the school's dilemma. "We've got all these mandates, but we simply don't have the money," she laments. "I spend a lot of my own money [on her students], if you want to know the truth. The administration here is very good, but I've found that the only way I can get by is to save my budget for big things. The little things are just easier to get on my own."
However, parents shouldn't let budget be the deciding factor in advocating for their children's school needs.
"Some parents feel paranoid about speaking up for their children," Peyton says, "because they feel like their kids are already consuming a disproportionate share of the school's resources."
Jennings adds, "Parents often struggle with the issue of costs, partly because they don't know their rights. I try very hard not to make a pain of myself, but to gently educate the schools my kids attend in terms of special needs and IDEA and ADA (Americans with Disabilities Act) requirements."
And when the politicians get into the act, things can get even more complicated.
"A lot of legislators ask: How we can reduce the costs of special education?" says Peyton. "But is that the right question? We're lobbying our state Department of Education to establish an emergency pool of funds to help schools out with this issue."
Orr agrees. "Don't be afraid of schools and the establishment. I'll never forget something I learned from my first ever support group — the key word is 'appropriate.' No matter what they try to tell you, just focus on what you think is appropriate for your child, then stick with it."
Why not start your own PAC?
When Orr worked on his son Kevin's first IEP, he had already spent more than 25 years as a special education teacher. But he acknowledges that it's vastly different to go through the process for your own child. That's why he continues his work with the parents' council — even though Kevin's now 18.
"I would highly recommend that parents get involved, either with a PAC or a support group," he advises. "Because some days it's going to seem like things are terrible and you don't think you can face another problem or attend another meeting. That's when you really need to know that you're not alone."
A good place to begin looking for a PAC in your area is your state's Department of Education. You could also ask the special education coordinator at your local school.
If you can't find a PAC in your area, why not consider starting one of your own? Peyton and MASSPAC have everything you need to know regarding how to start a council, including sample forms and brochures, on the Web site (www.masspac.org), or you can call (781) 784-8316. They'd also like to hear from you anyway, even if your PAC is already well established.
"We want to create a national PAC alliance," Peyton says. "That way maybe we can expand our lobbying efforts to include federal legislation as well." Peyton reports that she's been in contact with PACs in 12 states, and the response has been overwhelmingly positive.
Atkinson says the biggest hurdles his PAC faces are getting the word out and getting parents to use the council. "I think a lot of parents have a difficult time dealing emotionally with their child's disability, which makes it difficult for them to talk to others about it or ask for help. But it really is rewarding," he says. "And it helps you feel like you're not powerless in facing your child's disability. You're doing something positive."