Advocates train at VU to help families with special-needs children

Volunteers support parents trying to choose best education strategies By Andy Humbles • THE TENNESSEAN • August 13, 2009 A project started by a Vanderbilt student is training volunteers to advocate for children with special needs when problems with the children's education get to be more than their parents can handle. Strategies and goals for students with special needs are laid out through a formal Individualized Education Plan, commonly known by parents and educators as an IEP. Intelligence testing, services provided by schools and the amount of interaction with peers are all issues that can be contentious in the IEP process. "It's such an overwhelming process and, as a parent, sometimes you feel like you are the only one at your side of the table,'' said Murfreesboro's Jennifer Maynard, a parent of a child with special needs. "The law is very specific and ever changing.'' Maynard is one of about 30 people who have been trained through The Volunteer Advocacy Project, started in 2008 by Vanderbilt doctoral student Meghan M. Burke and Erin Richardson of The Arc of Davidson County, a group that supports and provides services to people with developmental and intellectual disabilities. Burke, 25, still directs the project; Richardson has moved to Serbia. Maynard's training wasn't just to make her better equipped to help her own child, but to make her an advocate for other families with children who have special needs. Those trained through The Volunteer Advocacy Project are being linked to The Arc of Davidson County as advocates for families who have children with special needs and who have a particular issue with the IEP process. What advocates learn Training extensively covers special education law and advocacy strategies. "We try and take some of the burden away from families,'' said Amy Biggs, volunteer advocacy coordinator for The Arc of Davidson County. A second training session was held last spring that included a video conference to trainees in Memphis. The next session is scheduled for five Fridays and Saturdays in September and October at the Vanderbilt Kennedy Center. A video simulcast is planned again for Memphis and for Johnson City and possibly Knoxville and Jackson. Burke began working with The Arc of Davidson County when she came to Nashville, helping with Richardson's project to better train attorneys on special education law. "It seemed we were missing the middle step in having an advocate work with the family,'' said Burke, who remembered issues her Chicago family had concerning a brother with Down syndrome. About 12 percent of families nationwide with school-age children have Individualized Education Plans, Burke said. "The purpose of an advocate is not to be adversarial, it's to receive appropriate services,'' Burke said. "It's not for the parent to ... win.'' Nevertheless, Burke and Biggs believe there are many more children who need an advocate than there are trained advocates available. When it comes to resolving such issues, volunteers trained through the advocacy project have a good batting average, Biggs said. The Arc of Davidson County has received more than 70 calls for an advocate since the program began, Biggs said. Most wanted questions answered or more information. A trained advocate has been brought in to work on a particular IEP issue 29 times, Biggs said. Twenty-six of those times the advocate helped the family resolve the issue, she said. Three times the family ended up using an attorney after advocate intervention. Parents of children with special needs who want to learn more but aren't interested in being an advocate may go through free training offered by the statewide organization STEP (Support and Training for Exceptional Parents), Burke said.