Healthcare transitions for youth with special needs

Reduce anxiety by planning ahead



Many youth with chronic health conditions, whether physical or behavioral, have spent most of their life with the same primary care provider.   

This relationship has often weathered some of the most challenging times in a youth’s life. Families also have strong relationships with the primary care provider as well as some of the specialists.

The idea of changing providers is one that can provoke significant uneasiness. As many parents know, the healthcare system serving adults is less nurturing than the pediatric healthcare system.

In anticipation of transitioning into adult healthcare, many pediatric providers — both primary care and specialty — have created programs to introduce transition. Until recently, a youth was often transitioned abruptly, creating anxiety for all. Studies show that without adequate transition planning, young adults can experience significant health outcome declines.

To prevent a negative outcome, pediatric practitioners and family practice providers now discuss transition with patients and families.

Beginning around age 12, the discussion starts. For some, merely raising awareness of transition as the child gets older is a start. Youth need to be engaged in this process as well. Often the first steps are a discussion of the youth’s health conditions and their effects. It should include names of medications and their purpose. Some youth are ready to start managing their medications – remembering to take their medications, fill pill-planners, and give themselves breathing treatments or injectable medications.

At age 15 and 16, taking more responsibility to discuss their health at appointments becomes more important; this is good practice for adult healthcare. Awareness of insurance and carrying insurance cards with them is a start. Learning how to request prescription refills, how to check in for appointments and even how to make appointments are good next steps.

For youth with learning issues or intellectual disabilities, applying for guardianship with the probate court is necessary before they turn 18. Applying for Medicaid or Medicare may also be part of the process at this time. For youth covered under their parents’ insurance plan, they usually are able to remain on this insurance until age 26.

Don’t forget to discuss what the adult healthcare team will look like. Not only does a new adult provider have to be identified, often specialists are involved as well. Have conversations with the pediatric provider and specialists in advance.

As youth learn about their health issues and the healthcare system, these resources can be helpful:

• My Health Passport (www.sickkids.ca/myhealthpassport): Create a comprehensive document that includes insurance, emergency contacts, surgeries, equipment, medications/allergies, and more.

• YEAH NH (www.yeahnh.org): YEAH Council is a youth-driven group of individuals with disabilities and/or special health care needs. The Council is focused on developing and strengthening the skills and resources needed to achieve independence. YEAH does this by empowering, educating and supporting individuals and professionals in education, advocacy and healthcare.

• Got Transition (www.gottransition.org): National resource for information about healthcare transition for parents, healthcare providers and youth.

Transition is an ongoing process. For some, independence may be choosing what clothes to wear. For others, it may mean being able to fully manage their healthcare. Regardless of the goal, it takes time and support to achieve success.

Lisa Plotnik, MD is a practitioner in the Internal Medicine-Pediatrics Department at Children's Hospital at Dartmouth-Hitchcock Manchester. For more information, go to www.chadkids.org

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