Transition to Adult Health Care
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."
Parents tell us...
"I have been so involved in his health care that it was a shock when I wasn't included."
"I knew she needed an adult doctor when she told me she had a serious boyfriend."
General Transition Information
Helpful general resources
Being in charge of your own health care can be empowering but also a little overwhelming. These resources can help.
- OHSU Doernbecher Pediatric to Adult Transitions in Health Care (PATH) Program
- Got Transition.org
- OHSU IDD Transition Guide
- 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
Oregon Center for Children and Youth with Special Health Needs: Transition planning checklist and Transition readiness assessment
OR F2FHIC: Adolescent autonomy checklist , Five Questions to Ask Your Provider About Transition, and Finding adult health care providers
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 Minor Consent and Confidentiality in Oregon
"Understanding your Health Insurance Costs" In-depth video from Consumer Reports
Condition-specific transition materials
- Condition-specific transition materials from American college of physicians: (General Internal Medicine, Cardiology, Endocrinology, Gastroenterology, Hematology, Nephrology, and Rheumatology)
- "Duchenne Muscular Dystrophy Transition Toolkit"
- Article 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
- Transition to Adulthood: A Health Care Guide for Youth and Families from Autistic Self Advocacy Network
- National Health Care Transition Resource Center Resources
- Black autistic girls
- Youth with I/DD in the juvenile justice system
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
- National Resource Center for Supportive Decision Making
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
Module 1 Being a Self Advocate
Module 3 When Should I Visit My Doc?
Disclaimer
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.
If you have any questions call or email us tel. 855-323-6744 (English) o 833-990-9930 (español) contact@oregonfamilytofamily.org