Young adults tell us...
"I was happy I had a family doctor when I turned 18. I had to change a lot of specialists, so having one office that already knew me and my history was helpful."
"I was used to having my mom along for my appointments. I had to ask more questions, and get the doctor to explain anything I didn't understand."
"I did not realize how much I did not know until I tried to get my insurance to pay for additional Occupational Therapy."
Parents tell us...
"I have been so involved in her health care that it was a shock when she turned 18 and I wasn't included."
"We had been teaching him to set up appointments, carry his insurance card, and to write down questions ahead of time. We were really proud of him the first time he went to the doctor on his own."
"I knew she needed an adult doctor when she told me she had a serious boyfriend."
General Tranistion Information
Helpful general resources
Being in charge of your own health care can be empowering but also a little overwhelming. These resources can help.
Guidebook from Rutgers University: Being a Healthy Adult: How to Advocate for Your Health and Healthcare
The ARC of New Jersey: Personal and family medical history form
National Center for Self Determination: My Health, My Choice, My responsibility curriculum and app
Tools you can use to prepare for transition to adult healthcare
Transition checklists and tools
Florida Center for Inclusive Communities: My Health Passport fillable
Young Invincibles Initiative: #Healthy Adulting 101: How Does My Health Insurance Work?
Disability Independence Group: Medical ID card wallet
"Understanding your Health Insurance Costs" In-depth video from Consumer Reports
Condition-specific transition materials
American college of physicians: Condition-specific transition materials (General Internal Medicine, Cardiology, Endocrinology, Gastroenterology, Hematology, Nephrology, and Rheumatology)
An article on how to use the Duchenne muscular dystrophy toolkit from Pediatrics by the authors.
Neurology Transition Toolkit (English) From Child Neurology Foundation
Neurology Transition Toolkit (Spanish) From Child Neurology Foundation
Guardianship and/or Supported Decsion Making
The ARC of Oregon: Support for Understanding and Implementing Supportive Decision-making
Supported Decision Making.org: Setting the Wheels in Motion Toolkit
Think About Your Life.org: Tools for thinking about your life
State of Oregon: Examples of Individual Service Plans
TAking Charge of My Health
All of these and more are found on OHSU's UCEDD University Center of Excellence on Developmental Disabilities Page. They were created in partnership with OSAC, Oregon Self-Advocacy Coalition
Inclusion of resources on our site does not imply endorsement nor does exclusion mean we do not think it is valuable. We work to keep our list of resources current and relevant but it is not exhaustive.