Parents of adult children with disabilities need more guidance

Every time I think I've got this "autism mom" thing down I find there is something else I need to learn. Our latest challenge is insurance. Even though I work for a company that allows you to keep your disabled children on your insurance there is more to it that just signing up for the insurance. Twice recently we have received letters basically tell us one or both of the boys have been dumped from the insurance. This actually has nothing to do with my employer, but the insurance company themselves. Once this was initiated by a birthday then the next time due to the insurance company doing an internal audit. Like I already aluded this is not a nefarious attempt on my employers part to reduce costs. You see, I work for MHMR. There are a lot of employees, who also have children who have a disability. MHMR is implementing a system to try to avoid this happening again in the future, but at the moment one of the boys is still without private insurance. He does have medicaid, but since we have never used his medicaid he has never been established at a doctor's office that accepts it.

So this has me thinking what else is in our future that we don't know about? I've already become aware of programs that have waiting list years long. We should have put them on the waiting lists when they were little, but we didn't know these programs existed. My goal for the next year is to put together a list of resources parents of children who will disabled into adulthood should be accessing and a "to do" list of things the families should be doing to make sure their adult children have everything they need if their parent becomes unable to take care of them even for a short time. Please send anything you would like added to this list to sharon_rd@att.net.