Health care for adults
- I thought group members might be interested in two new resources that
we have developed are are available on our Web site...and might have
some ideas for improving them...
The first is a booklet for youth and families
entitled "Envisioning My Future: A Young Person's
Guide to Health Care Transition". It is an introduction to the issue
of health care related transition for young people and their families;
and helps a family get started. Since it was developed for use in
Florida, many of the resources are specific to our state - but other
resources are national.
We also developed a set of three health care
transition workbooks for youth and young adults &
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 ayoung
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 health care goes smoothly.
While these workbooks can be done independently, by a
young person and family, it may 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.
These materials are available on the health care
transitions web site.
To access these materials, go to:
Comments and suggestions about these materials are
welcome - as well as any suggestions you have for
improving the process of moving from pediatric to
adult care; lessons you have learned that you would
like to share with parents, teens and other young adults
with Arthrogryposis - and ideas you have for improving the
adult health care system. From several young adults I have talked
with who have arthrogryposis, they continue to see pediatric
specialists; and see an internist or a family physician from general
health problems...and a big problem is having to go to an adult
hospital for care - where few staff are familiar with the condition...
Institute for Child Health Policy