First Case Scenario – How to Advocate for Children in Special Education

Allison Ijams writer

Receiving the news that your child needs to receive special education services can be an unwelcome shock, an enormous relief, or something in between. At the very least, it requires an immediate and often intimidating dive into the new waters of a deep and broad educational subculture. “You have to have a leap of faith that it’s all going to work out,” says Patti Jeanne Barry, a Wellesley parent. Even so, the initial process can often unearth some difficult truths that cause parents to recalibrate their expectations for their child. Add to this a steep learning curve and a lot of jargon and parents may feel beleaguered and outnumbered. “There is a mourning period,” says Beth Brown, director of elementary special education in the Wellesley Public Schools. “It can be a little overwhelming; we have to recognize that.” But there are a number of practical, concrete approaches that parents can take to manage their child’s school years which can strengthen their academic potential without draining a parent’s goodwill or resolve. As with most challenges, it requires patience, communication, and organization.

First of all, “I would advise parents to educate themselves about their child’s disability, whether it is moderate or severe,” says Kim Costello, president of the Weston Parent Advisory Council (PAC), a volunteer run, state mandated organization that supports and advocates for parents of students who receive special education services. “[Your school] faculty can’t be an expert on everything.” When parents become proficient in discussing their child’s disability, it enhances their ability to be an advocate for their child with educators and specialists. “Learn about the language and the details of your child’s disability,” says Tere Ramos, a Wellesley-based educational advocate. “It is important because a misstep could cost your child so much.”

In addition, experts agree it is critical to get to know the educators who will be working with your child every day. “As a parent, you have to figure out how to work with different professionals,” says Patti Jeanne Barry. When a parent has forged a working relationship with a teacher or a special educator, that person is, in turn, better equipped to support that student. “Parents are experts on their children,” says Dr. Regis C. Miller, director of student services in Weston. “Working with the school folks to provide information on who their child is can assist educators in identifying modifications and accommodations.”

But to the uninitiated, the special education world can feel murky and intimidating. “An IEP (Individual Education Plan) is very complex,” says Tere Ramos of the multi-page legal document that is forged in an IEP meeting. “Parents don’t realize that a box that is checked or not checked could mean something.” Even professionals agree that the process is far from simple. “[The IEP] is a daunting document, it absolutely is,” says Dr. Miller. “If I was a parent, I would find it very confusing.” But this doesn’t mean that parents can’t find myriad resources to bolster their knowledge and confidence.

Many parents begin by contacting the local PAC in their town. Both Wellesley and Weston’s PACs offer parents the chance to connect with other knowledgeable parents, attend workshops by experts in the field, and to find support and advocacy within the community. “People who have had children on IEPs for awhile will say to me, ‘We didn’t know you existed!’” says Kim Costello. “Well, we do exist and we have lots to offer!” In addition to four scheduled coffees a year, the Weston PAC invites area specialists to speak to their constituency. It also acts as a bridge between parents and special educators by raising parent concerns through monthly meetings between the PAC president and the director of student services. “I won’t advocate for a specific student but I will bring a general issue to her,” says Costello, “and she will often turn around and talk about it to her staff so at least I know that they are aware of what parents are experiencing.”

The Wellesley PAC offers monthly meetings that cover such special education basics as Parent Basic Rights, Assistive Technology, and the chance for members to join a private ListServ to confer with others about specific questions or to get more information. Both PACs have active Web sites that offer useful links to many outside resources, which give parents excellent guidance on how to navigate the special education process.

Another strategy parents use is the hiring of an educational advocate. Some believe that advocates are only brought in when communication has broken down between the school district and the parents and intervention is warranted. But advocates can help avoid misunderstanding and distrust at the start of the process by educating parents on basic rights, reviewing an IEP, and decoding some of the language that can seem arcane to the layperson. “Parents don’t know the gory details about an IEP. They might say ‘this looks good,’” says Ramos, “but an advocate might say ‘yes, but.’ ” They can also help in the IEP meeting itself. “These [special educators] are utterly knowledgeable about the issue and you are not,” continues Ramos, “the advocate is there to support and provide a bridge.” Most fundamentally, Ramos urges all parents to know their rights. “At the very least, attend a parent’s rights meeting. Most PACs offer them,” she says.

But sometimes, parents can find the system frustrating or communication can break down. Emotions can run high when two divergent points of view intersect at the expense of the child. “I found that when things weren’t going well, when I got upset, it never really helped,” says Patti Jeanne Barry. “I had to pull back and think: is my ego getting in the way of how I am viewing how my child is doing?” Acknowledging that families and schools don’t always initially agree can be part of the solution. “Everyone is coming to the table with different perceptions,” says Beth Brown, “and if we recognize that, we can work towards resolution.” Dr. Miller agrees: “Parents can come to us feeling like they are going to have to fight for their child’s rights and that is not the case at all. We want to see the child succeed as much as they do.” And sometimes, parents need to take a step back and realign expectations. “Parents want to see progress and kids don’t progress in a straight line,” says Barry. “Acknowledging that will mean you will have more patience with whomever is working with your child.” Tere Ramos says that is an important part of her job. “I manage expectations,” she says. “Sometimes parents want the equivalent of a Cadillac and all they can reasonably expect is a souped up, well-running Chevrolet.”

One way to facilitate communication is for parents to put requests in writing and to keep scrupulous records. “I tell parents to go to Staples and buy a five-inch binder,” says Ramos. “Keep a paper trail and keep it organized. Think of this way: these are federally mandated documents.” By law, requests for additional assessments and services must be acknowledged and acted upon in a timely fashion but only if they are put in writing. This type of information isn’t in the mainstream so it helps to keep updated on what to expect in the process. “Find out about special education in general,” says Costello, “research how far can [the schools] go in helping support your child.”

Both educators interviewed for this article hoped parents would use the schools as a resource for questions about the special education process. “Our doors are always open and never think that your question is something you should already know,” says Beth Brown. “If an answer comes back that you don’t understand, please ask again.” Kim Costello echoed this from a PAC perspective: “When I have a parent with questions, I really stress to please, please call the director of student services or another specialist at the school. They really want to hear from you. Don’t be afraid to call.” After all, “you are advocating for your most precious commodity,” Beth Brown adds gently. 

Online Resources for Parents

www.wellesleypac.org: Wellesley’s Parent Advisory Council’s Web site

www.westonpac.org: Weston’s Parent Advisory Council’s Web site

www.fcsn.org Federation for Children with Special Needs: This is an excellent starting place for parents. It is a comprehensive site that can help parents find in-depth information on basic rights, find an advocate, navigate an IEP meeting, decode the IEP, and much more.

www.doe.mass.edu/sped: This is the Massachusetts Department of Elementary and Secondary Education’s Special Education link that gives a lot of pertinent information for parents.

© 2011 Elm Bank Media | Beth Furman, Publisher | Beth@ElmBankMedia.com