Health Care Transition for Youth with Disabilities
There is a set of three health care transition workbooks for youth and young adults and families. The workbooks (for ages 12-14; 15-17; and 18+) are designed to help families and youth think about future goals, to identify things that a young person is doing currently to be independent in health care; and help figure out what needs to be done to assure that the young person's future transition from pediatric to adult-oriented care goes smoothly.
While these workbooks can be done independently, by a young person and family, it is suggested that it would be best for families, youth and providers to work together to identify current strengths and needs; identify priorities; and develop and implement a plan for addressing current and future needs.
Also available at this site are two downloadable videos on transition related materials. These free resources were funded through a contract from Florida Children's Medical Services Program (Florida Department of Health) to the Institute for Child Health Policy (ICHP) at the University of Florida. The workbooks were developed by John Reiss, Ph.D. and Robert Gibson, MSOTR/L, Ph.D., and is based on products developed through their grant from the National Institute on Disability and Rehabilitation Research (NIDRR).
The workbooks contain worksheets for parents as well as for youth. As the parent to a 10 1/2 year-old I am thankful for the opportunity to prepare for this transition in my child's life. There are questions I never considered and worth discussing at this point in time before he even reaches the age of twelve.
It is all about promoting independence and giving your child the data they need to form their own decisions about their future and discuss what they want to accomplish. Thoughts to ponder would include what type of chores your child can handle, how at ease they are with money, what type of relationship they have with teachers and school counselors, developing a relationship with health care professionals and looking into colleges.
For children who might be on medication those issues are addressed. Learning about SSI, using debit cards and health plan deductibles are explored in the worksheets. Also questions relating to exercise, smoking, drugs and alcohol. The worksheets have goals, activities and address safe sex and living arrangements as an Adult.
Although my son is ten he knows he wants to go to college to be a Marine Biologist. His interest changes often - currently it is Penguins. He can discuss for hours on end the issue of endangering wild life environment. He would like to bypass teenage years and go straight to adulthood. He is most enthusiastic about learning to drive a car and getting a job.
The workbooks are in PDF format, the 12-14 book contains 24 pages, the 15-17 book has 28 pages with the 18+ workbook consisting of 30 pages.
There is no time like the present to start reading over the workbooks to get a sense of what you can be teaching your child now and what you need to prepare for in the near future. This is a wonferful tool for parents of children with any disability or special need. By working alongside our youth in this transition into adulthood anything is possible.
Even if your child has impairments and might not be moving out of the house at the onset of adulthood, there are issues covered in the workbooks like the insurance and SSI that needs to be addressed by the family members. For the immediate future I will be dealing with Nicholas's transition, but there are topics I need to work on in relation to Matthew's future.
These workbooks should be utilized by parents of children entering into middle school, support groups that deal with teenagers, social skills group facilitators could print them out and make them available to parents and cover topics with youth. Also worth noting are therapists that work with families, those that homeschool and school counselors - this is a resource they need on their desks for the students and families who do not have access to the internet and can possibly interpret for those who utilize other languages.
This is a positive resource that opens up the lines of communication with our youth and helps parents prepare for the future with topics needing to be addressed for those with special needs and disabilities.
Website for the workbooks hctransitions.ichp.edu
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