Transitioning from pediatric to adult health care for children with disabilities

One necessary transition that children with disabilities and their families face is from pediatric to adult health care. This transition may seem daunting, but with careful planning and preparation, it can also be a time of growth and opportunity.

Here are some tips and insights from my personal experience as the parent of a child with a disability and resources I’ve discovered along the way.

Start early

The transition from pediatric to adult health care occurs gradually, starting around the age of 12. It’s important to plan early and involve your child in the process. This can help your child feel empowered and confident as they begin to slowly take on more responsibility for their own health care. The first step is to talk to your child’s pediatrician and specialists about what to expect during the process.

Research

Not all adult health care providers are created equal, so it is essential to do your research to find the best fit for your child. Consider factors such as location, accessibility and the provider’s experience in treating patients with your child’s condition. It can be helpful to ask for recommendations from other parents or your child’s pediatrician or specialist.

Prepare your child

Moving to adult health care can be overwhelming for your child. If possible, encourage them to ask questions and help them understand what to expect from their new provider. One way to ease them into being active participants is to have them start scheduling appointments, assist in filling out paperwork, and communicate with the provider.

Establish a care plan

A care plan is a written document that outlines your child’s health care needs and treatment goals. It’s essential to work with your child’s health care provider to develop a plan that meets your child’s unique needs and helps them achieve their goals. Be sure to review and update the care plan regularly to ensure that it remains up to date.

Advocate for your child, and teach them to advocate for themselves

Advocacy can make a significant difference in your child’s health care. As a parent of a child with a disability, you’ve been your child’s greatest advocate. It is important to speak up and ask questions, and encourage your child to ask questions if they are able, to ensure that your child’s health care provider is meeting their needs. Do not be afraid to seek a second opinion or to change providers if you or your child feel that their needs are not being met.

Additional health care transition resources

There are many other actions to take, such as transferring records or having your child sign a release of information when they turn 18 if they want you to have access to their medical records, just to name a couple. Got Transition is an excellent, federally funded resource. This website contains helpful tools and resources for youth, young adults, parents and caregivers to help navigate this period. The site includes readiness assessments, sample care plans, sample medical summary sheets, implementation guides for six core elements of health care transition and much more.

Moving from pediatric to adult healthcare is a significant transition for both parents and children. However, with careful planning and preparation, it can also be a time of growth and opportunity for your child. By advocating for your child and working closely with their healthcare providers, you can ensure that your child receives the best possible care and support as they transition into adulthood.