CCA Gives Tips for Transitioning into Adulthood with a Craniofacial Difference

Children’s Craniofacial Association (CCA) has posted tips for transitioning to adulthood for those with craniofacial differences. We’ve summarized some of their recommendations, but you can read the full article here.

By the time most individuals with craniofacial differences become young adults they have often have their care running like a well-oiled machine. They have a care team they love and trust, they have learned how to manage their condition and life as an adolescent, and they feel prepared to take on life day to day.

However, when adulthood is reached, new and changing responsibilities ensue. They must find a new doctor and figure out how to navigate adult health insurance and financial stability. Emotional and social wellbeing are also affected with a transition out of the home for many individuals and adjustments that come with independence.

Medical Care

Medical care as well as dental care are essential for those living with a craniofacial condition and although some can continue receiving care from their pediatric team until they are in their mid twenties, many must find other care earlier on. Here are some things you can do to help prepare for the transition that is bound to come sooner or later.

  • Ask your current doctor what doctor they recommend when you age out of pediatric care. By showing up early and being kind, you can cultivate a good relationship with your care team who can later help you move on when you’re ready for a new doctor.
  • Talk to fellow patients you’ve met through CCA who have already gone through this experience.
  • Check out the list of accredited teams created by American Cleft Palate Craniofacial Association (ACPA).

Emotional Health

Emotional health is also vital. When you are in the midst of dealing with a mental health issue, it can be difficult to do all of the things necessary to improve your health such as making appointments and taking medication. There is also a stigma that prevents individuals from pursuing the care they need. Individuals with craniofacial differences are even less likely to seek help. CCA recommends:

  • Talking to your teen about where they will receive mental health care after moving out or starting college.
  • Ask your current medical team for recommendations.
  • Search for ways to keep your child socialized in their new place. Social health is important to ensuring good mental health. Volunteer opportunities, work, or clubs can be incredibly beneficial.
  • Join a support group of others who understand exactly what it is that you go through.
  • Attend a virtual program held by nonprofits or museums to grow your network.
  • Reach out to CCA for additional ideas.

Financial Stability

The biggest tip CCA provides for when dealing with finances is to take things one thing at a time. It’s a complicated thing that everyone has to figure out how to navigate, even those without conditions that require a lot of medical care. Don’t be afraid to ask for help or to use the resources available to you.

  • Ask questions! Talk to lawyers or a student currently in law school to get answers.
  • Do research on power of attorneys, court approved guardianship and other things the may be important for medically complex patients.
    • Utilize resources like Legal Zoom, Arc, and Family Voices.
  • Think about using a financial advisor.
    • Use life insurance calculators before talking to an advisor to provide them greater insight.
    • They can discuss Medicaid and state sponsored health insurance with you.
  • Reach out to nonprofits for help (Arc as well as Family Voices provide resources for those of all socioeconomic backgrounds).
  • Utilize Special Needs Answers.


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