Thursday, December 18, 2008

Seeking Peace of Mind - As our Children Become Adults

As parents, we all want peace of mind and want to rest easy knowing that our children will get the services that they need as adults. As an advocate for my own special needs child, I have been navigating the roads that lead to educational and health related services for nearly 15 years. As my son nears 18, I am keenly aware that he will soon come of age and I will not always be at his side to ensure service delivery and this keeps me awake at night. Knowing that time stops for no one, I know that the time to act is now. You and I can not wait until our sons and daughters are adults to take action.

This point was recently made very clear. I was sitting in a school group meeting for parents. The counselor/facilitator, started the discussion, leaning toward a parent he said, "So, Max, will be 18 on Wednesday, what are you going to do now?" I was at first perplexed, new to the school, I wondered what the school had done to prepare this young person for life beyond high school? When I asked about career planning, job coaching, vocational rehabilitation, and resume writing, I got the distinct impression that transition planning was not a priority at this school. At this crucial time, the school official seemed to be indicating that the school's responsibility would soon end and they would be thrusting this young man back into the arms of his parents who would then face the challenge on their own.

I shuddered, knowing that my son would soon be that age and he was not nearly ready to be self sufficient. It was at this crucial moment, that I began thinking of transition services and how we could help prepare him. My son is working, just went through vocational evaluation and with our support will have job skills before he is out of school, making his transition into the world of work less daunting. Other young people are not so fortunate.

Some have developmental disabilities so severe that their parents are never able to fully relax. Some states have very long waiting lists for services, and as a result these individuals may not get needed services for MANY years after they reach adulthood. These long waiting lists are exhausting and this often places a significant burden on the family as the parents age and their own medical needs increase. Because of these long waiting lists, parents and caregivers are expected to continue to provide 24 hour care, activities, and job related services for years on end. Some parents have died before their children have received services and with this in mind, I urge you to vote to end these waiting lists. Parents and caregivers need support too!

The proposal below is very important and could spell real hope for the parents with children with significant developmental disabilities and it needs our full support. It will take many votes to get this item on Obama's radar screen and the more people who vote for it the better! I hope everyone will take the time to vote. Only a minute or two and you can voice your thoughts on many educational issues at the same time.

What concern keeps you awake at night? Do you need support and services for your teenager? What knowledge and skills does your teen need to prepare for the next phase of his/her life?

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