One group of parents in California’s Bay area say inclusion won’t happen unless they ban together. About four years ago they started an informal advocacy group to empower parents to fight for inclusion.

Ellen Hovey is one of the founders of the Educational Advocacy Group. Her 17-year-old son, Jeremy, has Down syndrome and is in a transitional program now.

“I had to fight for inclusion and I want other parents to understand the positive impact it has had on my son. I started this group because too many parents don’t understand their child’s rights.”

The group is truly a grassroots effort. They get word out through a private Yahoo group, social media, and their local Down syndrome association. The last Friday of every month, parents meet at Hovey’s house to discuss IDEA, IEPs, FAPE, LRE, due process. Basically, how to ensure their child receives an individualized education in the least restrictive environment.

“We don’t aggressively push inclusion on new parents, because it’s a lot of work and everyone has to decide what’s right for their child. We do council parents that schools are a business. Their job is to get as many kids that need an IEP into places as cheaply as possible; with as little effort as they have to expend. You have to understand that going in.”

The educational advocacy group has anywhere from 5 or more parents a session. Hovey says they’ve gone so far as to help parents through due process, by helping with lawyer and advocate recommendations. And it seems to be working:

“The school officials started noticing a common effort for inclusion. We go into educational conference and teachers say ‘you’re one of those Down syndrome families and you’re all trying to get included,” Hovey describes. 

Hovey’s best advice is to not look for the “perfect school,” but instead learn your child’s rights and change the school you’re in.

“I shy away from recommending a particular district. For example, my school district was open to inclusion, but then we got a new superintendent and special education director and things took a turn for the worse. You have to learn how to advocate, and change the district you’re already in,” Hovey argues.

Hovey reminds parents that attend that she and other leaders of the group are not certified advocates. “We’re just parents that want to help out those that come after us. We’ve been through the system, and feel like we have something to share.”

Hovey is now focusing on transitional services and employment for her son, Jeremy. She says she wishes there was a parent group for this stage of life too. “It’s always important to stick together and fight for what’s right. Our children deserve it!”