Integrated transition planningfor youth with disabilities creates a path to living a full, meaningful, and connected life as a community member. It means planning for what will change as your child becomes an adult. We know that everyone is different, so every idea might not be right for your family.

Start the Process Early

Families can prepare youth for health care transition. This can start as early as age ten or whenever they are developmentally ready. One example is to talk about their daily medications. Explain what each medication does, what it looks like, and when it’s taken. Some parents find that visual schedules and reminder apps are also helpful tools. At doctor visits, coach and model how your youth can speak directly with medical providers to ask questions and explain any concerns directly so eventually they can do this without your assistance.

During their teen years, continue to encourage them to take more responsibility for their health care, such as checking in at clinic visits, carrying a list of emergency contacts and entering them into their phone, refilling prescriptions, and preparing questions before appointments. If providers send you electronic reminders, make sure they are also sent to your youth’s phone.

A great way to start preparing a youth for transition is to encourage them to speak alone with their medical providers. Before a visit, write down or record in their communication device a few questions they want to ask their doctor. For more information, Got Transition® provides a list of differences between the pediatric and adult healthcare systems and transition tips. See gottransition.org/resource/?pediatric-vs-adult-care-differences.

Self-Advocacy is Key

As with other parts of a youth’s transition to adulthood, learning to advocate for their health and medical needs is essential. Identifying with and explaining their diagnoses are important steps toward independence. When a child is old enough to understand their diagnosis, parents can help them choose if they want to disclose their personal information at school, work or to others in the community.

Right to Privacy 

In most health systems, starting at age 12 children have the right to speak to their doctor alone about their health care, including reproductive and sexual health topics. Prepare yourself before this by asking the medical provider how they handle this change for their patients and talk with your child about it.

Moving to Adult Healthcare Providers   

If your child’s health care providers are pediatricians or pediatric specialists, your youth will need to move to adult providers at the age of 18, 21 or 26 depending on the clinic or health system’s guidelines. If the youth sees a family medicine doctor, there will be changes in consent and privacy. Talk with your child’s primary care provider about the steps to take toward transition and ask for recommendations for adult providers who have experience with your youth’s condition or diagnosis.

Contact Covering Wisconsin, (877) 942.6837 or coveringwi.org to find affordable health coverage for young adults. And read our Health Coverage Options for Young Adults fact sheet for more resources.

Differences between Pediatric and Adult Healthcare Offices                     

Parents tell us that the move from having their youth at a children’s hospital to a general hospital can be startling. Wisconsin’s children’s hospitals are family-focused and offer coordinated care if multiple medical specialists are needed. While it is not universal, starting at age 18, youth will be admitted to a hospital facility or unit that cares for adults. Related to consent rights, providing family input, staying overnight in your adult child’s room, and/or coordinating their care, may take more assertive parental advocacy and self-advocacy by the young adult.                                                                                        

Differences that Families Notice                                                                       

One big difference is the environment of the adult provider’s waiting area and office. The colorful waiting rooms decorated with child-friendly pictures are gone. While most adult healthcare providers try to be warm and welcoming, children’s providers tend to emphasize this more.                                                  

Finding New Adult Healthcare Providers                                                                   

When looking for a new doctor, think about the location, the accessibility of the clinic and exam rooms, the provider’s familiarity with your young adult’s medical condition, and whether the provider can coordinate care with other specialists. Even if your young adult stays with their current doctor after age 18, be aware that if they are admitted to the hospital, they will be admitted to a hospital for adults rather than a children’s hospital. For more information, see The Pacer Center’s Tips for a Smooth Transition.   

Legal Considerations                                                                                                         

Starting at age 18, or as young as age 12, federal law requires parents get written consent from their young adult (the patient) to keep access to their medical records and communications with their medical providers. This includes electronic access, like MyChart or similar platforms. Unless they are under Guardianship, the youth must sign a Release of Information form to allow parents to access to their youth’s medical records. Talk with your youth’s clinic or health system about the age this change begins and what is required for a release of information.

In the case of mental health care, state law allows minors to maintain privacy from their parents as young as age 14. Learn more about these changes at Transition for Youth with Mental Health Needs.

Families need to discuss whether guardianship, or other less restrictive options, like Supported Decision-Making Agreements, need to be activated to support a youth’s healthcare decisions. To learn more about these and other legal tools see theSupported Decision-Making Toolkit and our Supported Decision-Making fact sheet.

Learn More

• Health Transition Wisconsin has learning sessions, including Build Your Bridge and Dreaming Differently, videos and transition planning tools. 
• Got Transition includes online tools and information. 

INFORMATION AND RESOURCES 

Wisconsin Wayfinder: Children’s Resource Network, 877-WiscWay (877-947-2929): Wisconsin Wayfinder offers families one name and phone number to find services for children with special health care needs. Wayfinder connects you to a resource guide at one of the five Children’s Resource Centers in your area. 

Do you need a resource in another format or a printed copy? Contact Lynn@fvofwi.org.