Saturday, October 22, 2005

Planning for Your Complex Child as an Adult

I want to say a big thank you to ABC for their recent Nightline program about Adults with Autism. The spot gave good insight into the problem of transitioning adults with disabilities from a parents' home. The two adults they featured appeared to be fairly high functioning. The transition is even more difficult for lower functioning adults.

I watched the Nightline program with delight because I realized that my book, Parenting Your Complex Child (AMACOM Books Spring 2006) addressed the problem. Suggestions are given for creating a transition plan while a child is still in school so that IEP goals can be set to help him reach as much independence as can be reasonably expected. The final chapter takes estate planning from a different prospective.

As a former professional guardian, I have many times been left to wonder what common language in wills and trusts such as "to enable my child to live in the same standard of living maintained during my lifetime". If you knew the family or if the parent is available to explain the standard of living the child maintained that is great. However, many times the parent is either deceased or suffers from conditions such as Alzheimers which prevent them from being able to communicate their wishes.

Suggestions are made for how to use some of the same documentation used for communicating with doctors, educators, case managers and other even your child herself. An abbreviated history of treatment and development in contained in the documentation system which will be helpful not only during childhood but later in transition to adulthood. I did a visual to help Billy Ray understand the process of going to a certain buffet. Since caregivers occasionally take him to the buffet without me a text box was added with his favorite foods. Placing of copy of this visual used in everyday life now in the estate planning file you maintain answers the question where does he like to go and what does he like to eat. That information can be a big deal for someone unable to communicate it to a guardian or caregiver who doesn't know him.

Until tomorrow,

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