Mothering and the special needs services maze

Last week I attended the “System Navigation 101” Family Panel on Transition, one of the "Informing Families Transition Series" presented by the Cark County Community Services Developmental Disabilities Program in partnership with ESD 112, the Washington Initiative for Supported Employment and the Clark County Parent Coalition.

This session was chock full of information about government programs that serve the developmentally disabled throughout the life span. Maybe too much information – after the session I was somewhat slack jawed and overwhelmed.

Until now, I thought that the hardest years of parenting Sayer were the early ones – the initial diagnosis of autism, the behavior issues, getting him on track at school. Since pre-school we have been focused on early intervention, IEPs, education and inclusion goals. In the past year or so Sayer has fit into the groove of school better than before; there have been fewer meetings, and the ones we go to have been pleasant and productive. But, alas, I am realizing I don’t have the luxury of getting complacent because the future is calling.

In public school it is a given than children with special needs will be accommodated, one and all. There are “Child Find” evaluation sessions to actively identify young children who qualify for services. Yet as our children turn 18 or 21, the path is less clear. What I am rapidly learning through my venture into the transition maze is that resources are limited – for supported housing spots, for supported employment spots, for financial assistance programs for housing and health care. Family members must take a proactive role in ferreting out services, and applying for these services at certain times -such as before or after your child turns 18 or 21, or as soon as possible/yesterday.

Luckily, I have the know-how, personal contacts and time to pursue available options for Sayer – although the planning process is still daunting. I worry more about other parents, like the mother of one of Sayer’s class mates who told me “People keep telling me to apply for DD but I have no idea what that is or where to start.” In her case, I was able to get her a packet of information, but for other parents out there ……

After the “Systems Navigation 101” session I chatted with a teacher who is a member of the core group that obtained funding for the transition series. We agreed that spreading the word about transition planning is quite a challenge. As I have observed with early intervention and school services, the parents who are able to garner the most for their children are often those with “service capitol” – the education, time and ability to pressure educators and therapists for services their child is entitled to. Similarly, I am concerned that the families with the most service savvy will have the greatest success in carving a fulfilling adult lives for their children.

In the spirit of building “service capitol” for all parents of special needs children, my next posts will feature more of what I learned at this last transition session, and will include some links for information. As always, please help spread the word!