Since birth, we’ve managed our children’s health care.
It’s taken years to research and understand their unique needs, develop relationships with trusted pediatric providers, and learn to deal with insurance problems.
What will happen when our kids become adults?
Will they be able to make informed decisions and follow through with their own care when they reach the age of majority? Who will replace their trusted pediatrician and current specialists? How will insurance coverage change and when? What can we and our kids do now to prepare for the future?
Until recently, families had to navigate these uncertain waters by trial and error. Now there are user-friendly tools to support us each step of the way.
Planning Guides
The Institute for Child Health Policy (ICHP) at the University of Florida has published plain-language planning guides for families to use at each stage of adolescence. You can download each planning guide, along with youth-friendly companion booklets, below:
- Ages 12-14 guide, with companion kid’s booklet
- Ages 15-17 guide, with companion teen’s booklet
- Ages 18+ guide, with companion young adult booklet
Or, you can register for a free account to complete the guides online here.
Teaching tools
Our kids must learn many skills in order to become increasingly independent in their own health care. Where to start?
- Talking With Your Doctor is a separate ICHP website designed for adolescents. Through video lessons featuring young adults with disabilities, teens learn the steps to becoming gradually more independent in communicating with their health care providers.
- Healthy Transition Skills Lessons are included on the HealthyTransitionsNY.org website. These lessons, available in pdf or audio, address many individual skills such as calling for an appointment, refilling a prescription, maintaining medical records, etc.
- Learning videos are also included on the HealthyTransitionsNY.org site. Some videos include young adults modeling specific skills. Others address challenging topics such as health insurance and guardianship. (Note that the insurance videos were done before recent federal healthcare changes and the guardianship video cites NY statutes).
- Tool Chest on the same site offers an assortment of tools to help teens apply the skills and concepts addressed by the lessons and videos.
Teen health issues
From sexuality to nutrition to mental health, our kids are faced with choices that affect their wellness. Will they have the information they need to choose well?
- TeensHealth, sponsored by the Nemours Foundation, provides information about a wide variety of teen health issues and includes a “Making a Change” action planning tool.
- WRAP (Wellness Recovery Action Planning) is a process that empowers kids and adults to maintain their mental health and plan ahead for possible crisis situations.
National Health Care Transition Center
The Center’s new website Got Transition? hosts webinars with current information on a range of health care topics. There are also links to coordinated health care transition resources around the country. You can subscribe to their e-news to stay abreast of new health care developments.
Organizing all the information
So much information! How to keep track of it all?
Try Footprints, a planning tool developed by the Down Syndrome Society. Footprints is not just for young people with Down Syndrome. It’s a structured tool to organize essential health care, financial and legal information in one place. You can download the Society’s Footprints for the Future Planning Manual here.
One step at a time
Whew! All these tools in one place can feel a bit overwhelming.
I encourage you to set aside a little bit of time to explore just one resource at a time. If ever there was an elephant that needed to be eaten a bite at a time - it’s health care transition!
As you explore the resources, please come back and share your thoughts and questions in the comments. We’ll all benefit from each other’s experiences along the way.
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Image by ICHP
