For families who have children with disabilities or special health care needs, their child’s 18th birthday is more consequential than most. It often comes with new choices and important decisions to make, new programs and providers to find, and a mountain of paperwork. This time in their child’s life can be stressful, and families may look to their pediatrician to guide them through many of these changes.

Legal Changes: At age 18 a person legally becomes an adult and is assumed to be able to manage their own finances, consent to medical treatment, sign contracts, and exercise their legal rights. For some of those with disabilities, assistance with decision-making may be needed. This could include having parents petition to be their adult child’s guardian, but that isn’t the only option anymore. Less restrictive options, including Supported Decision-Making Agreements, are being used more frequently. Supported Decision Making Agreements allow the person with a disability to access support in navigating the decision-making process while retaining their right to be ‘the decider’ and make decisions that direct their lives, including around their healthcare decisions. Other decision-making tools could include having a youth sign Release of Information forms at their clinic and at school, and completing a Power of Attorney (POA) for Healthcare or for Finances.

HealthCare: Many children with special health care needs see more than their primary care provider, so their transition to adulthood may include finding new specialists, new therapists and receiving care at a hospital for adults rather than at a children’s hospital. Families depend on their child’s pediatrician to guide them through this process. They need guidance on how to find an adult primary care provider and how to make sure their child’s ongoing care is coordinated with other medical professionals. This is also a time when parents need to step back and encourage their youth to take more control over their own health and wellbeing, including refilling prescriptions, and communicating with medical providers directly.

Education and Planning for Life After High School: Age 18 also comes with the move from high school to work or college. Some teens with disabilities choose to participate in transition programs within their school district. Transition programming allows students to learn life skills, participate in job experiences, and get to know their community. Students often have support from the Division of Vocational Rehabilitation (DVR) to gain job skills and support for community employment.

Long-Term Supports: At age 18, most children who have been enrolled in the Children’s Long-Term Support (CLTS) Program transition to adult long-term care programs like IRIS (Include, Respect, I Self-Direct), Family Care or Family Care Partnership. Their primary care doctor and other medical team members may be asked to share relevant medical information, complete required forms to confirm eligibility and support the enrollment process as they work with new caregivers.

There are also other aspects of transition to adulthood, and each family’s experience varies. If families are looking for guidance on transition, Wisconsin’s Children’s Resource Centers offer support and assistance. Also, starting when their child is age 17.5, families can receive assistance from their county’s Aging and Disability Resource Center.

Resources for Families and Professionals:

  • The Family Voices What’s After High School session offers families a broad overview of the transition to adulthood. These virtual sessions are scheduled regularly and come with a resource guide. An online webinar is also available – familyvoiceswi.org/learn
  • The Family Voices Thinking About Supported Decision-Making session explains what families need to know about decision-making supports and legal tools for soon-to-be adults in Wisconsin, including alternatives to guardianship.
  • The transition planning fact sheet series offers easy to under on all aspects of transition planning – familyvoiceswi.org/resource-library/
  • The Center for Transition to Adult Healthcare is a collaborative project of National Family Voices, the Waisman Center, Got Transition and other organizations, offers resources on the move from pediatric to adult healthcare for families and professionals – familyvoices.org/healthcaretransition/

To learn more about Family Voices of Wisconsin, our resources, and learning sessions for families and professionals, see familyvoiceswi.org.

To Join our Network, go to familyvoiceswi.org/connect or call 608.512.0217.