What this article is about: this article provides a brief overview of transition to adult care and links to resources where you can find more support and information.
Transitioning a child with complex medical needs to adult care can be an overwhelming project. The links below will help you to get started.
Start with this excellent article on transitioning your medically complex child to adulthood by Complex Child magazine.
Consider creating a personalized advocacy toolkit so that you have your information totally organized and an entourage of helpers when this transition starts to happen. Send to your team your own list of transition questions and you will get a wealth of information in return!
Don’t forget to e-mail your social workers and case managers at the hospital and school system and ask them to explain what to expect in the transition process. If it happened today, to which medical center would they refer you? (you probably have some idea, but ask anyway). Is there a program in place at the hospital to assist with transition? Can they put you in touch with a family with similar circumstances to yours who has successfully transitioned?
Go to your local social media group and ask if anyone has gone through this transition process. When you find someone, ask if they can post about their experiences and recommend helpers like social workers, financial planners, and lawyers who were particularly useful in this process. Just asking the question is guaranteed to launch a lively discussion, and it will be great to hear the experiences of families who live in your area.
Disability.gov has a page on transition that has some great resources.
Foster care: For people with disabilities who went through the foster care system, this guide from the Florida Division of Vocational Rehabilitation is absolutely wonderful.
Financial planning: this Special Needs Financial Planning blog post breaks it all down nicely.
Education and Employment: The Center for Parent Information and Resources has a great overview on transition in the school setting that is helping me to get oriented to all that is involved.
Social Security Compassionate Allowances List: In response to complaints about long waits for the Social Security Administration (SSA) to make determinations for Social Security disability benefits (SSDI) or Supplemental Security Income (SSI), SSA now offers a Compassionate Allowances program that expedites the application process for people who have certain conditions. Find out if your child’s condition is on the list.