I am the first to admit that the idea of transitioning Charlie to adulthood absolutely freaks me out. I am FINALLY all settled with the doctors, therapists, schools, systems, insurance, and programs and I will have to do it all over again in what seems like a few short years?
I find that a lot of the resources out there for transitioning kids with chronic illnesses are aimed at kids who are capable of becoming independent advocates for themselves. My Charlie has a profound intellectual disability and will probably never be able to fully communicate his medical history, wants, and needs to a health care provider or live independently. It is very possible that I will always have to be his voice and make decisions for him. This adds a really challenging layer to my transition planning, so I need to start early.
Here are some of my questions/worries about transition:
- Will he live with me or in a group home?
- Where are the group homes?
- What if the group homes are horrible like the institutions I saw on 60 Minutes? How can I find a nice one?
- What happens at these places? What will his life be like?
- How will I pay for the group home?
- If he stays with me, how will I take care of him alone? He’s only six and it’s already difficult to bathe him alone. Can I get an aide to help me?
- What are some things I will need to look out for at his IEP meetings as he gets older?
- If Charlie is eventually able to work, are there rules about how much money is he allowed to make?
- How will his Medical Assistance and other benefits change?
- How do Social Security benefits fit in with all of this?
- What forms will I need to fill out? What are the associated timelines and deadlines?
- Will I need to make myself his legal guardian? How does that work?
- Will his sister have to play a role in any of this?
- Are my assets protected if Charlie needs expensive care?
- Are my parents allowed to leave money to Charlie in their will? If so, how much, and under what circumstances?
- What is our children’s hospital’s policy on transition?
- What doctor will Charlie see when he is transitioned to adulthood?
- How will all of his medical records get transferred?
What will happen to Charlie if anything happens to me?
I am currently in the early stages of this process and will update these links and this narrative as time goes on. However, although incomplete, I hope this helps you in your exploration of transition resources for your child.
The first thing I recommend is that you create 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 (the one you identified or created as part of your personalized advocacy toolkit) 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.
Next, go to the Child Neurology Foundation (CNF) page on transition. Every time I go to their site I say, “WHOAH! Where has this been all my life?” I am so thankful that they put together this page. It’s really, really good, and not only for people with neurological conditions.
I want to highlight some of the other links that will be particularly useful to my readers:
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. You should already know about this group from when you created your personalized advocacy toolkit.
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.
As you can see, I have a lot more questions than answers about Charlie’s transition to adulthood, but at least I am armed with all of the information that I need to make his transition go as smoothly as possible.
What are your experiences with transition? Do you have any great advice or resources to share? I would love to hear from you in the comments below!