@Jill- Unless you can afford to maintain 2 residences in separate states, I don't think there is anything you can do to insure a transition without at least temporary loss of services. You are already aware that the biggest problem is the lack of portability of services. It seems that your only option is find a state that has a "no wait list" policy. You still have to apply, but once approved, you are in without a wait list. There was a woman on an Illinois news group who moved her son to Arizona and she told everyone that Arizona worked off a no wait list policy, but this was before the worst of the recession...about 4 years ago. You might try contacting state branches of the ASA or ARC and asking them what the services climate is like (wait lists or no, speed of application process). They may be your best and most reliable source of information.

I've heard about micro-boards a few years ago. But at that time, our state was resistant. I like the idea because then the "board" manages the individual's services rather than granting that power to an agency.

Disability Scoop maintains a yearly list of state rankings for medicaid spending on disabilities. Most of the programs our kids use will come from Medicaid programs. You can find this list at http://www.disabilityscoop.com/2012-state-medic...

Perhaps parents, like us, can petition the federal government for a "portability of services" program. Of course, this would be easier with a single payer health care service. As it is now, if portability of services existed - it would throw states with wait lists even longer wait times because people moving into the state who had services will get priority over those who have been on the wait list for years. Parents would flock to the best states and those states would become overwhelmed. The only solution would seem to be making Medicaid a full federal program. Our current Congress would never pass such a plan. Sadly, we need portability of services in today's economy. Parents and care givers must live where they can find work. Parents get job transfers and military families move fairly often. It makes no sense to have to start all over with wait lists and evaluations to determine eligibility or having to set up guardianship every time they move.

Some states are allowing parents to create what is called a "micro-board". Micro-boards are essentially non-profit organizations comprised of the individual with a disability, their family, friends, and caregivers. I a still learning about them but it appears that as a micro-board, the individual qualifies for funding on the level of a group home. There are lots of hoops to jump through, but once done...funding is a bit easier to obtain. The individual and his/her team sets up a home and directly hires workers to provide care and services. A micro-board doesn't appear to be portable.

Everyone agrees this is the situation. And I'm not aware of anyone fighting to change it. Unfortunately most of us don't have the time or energy to tackle another battle. ... The only way I can move to another state is to wait until I retire so I can care for my son during the "wait list years". That's assuming I can still manage him when I'm in my sixties.

For our kids that are severe, there appears to be no answer. But our lives are already restricted due to this disability so I guess that shouldn't be a big surprise.

This is a dumb question, my son is 21, but is it possible to move elsewhere where there are alot of services for his adult life.