Many feel that young adulthood is filled with the best years of your life. However, the experience for individuals and families affected by facial differences comes with some harsh realities fraught with unanswered questions. Where does our family turn for medical and dental care now that our young adult cannot go to the children’s hospital? How do we assist our young adult with their social and emotional wellbeing? How does our family ensure financial stability after high school or college? There is a way forward. Here is how to make the most of those teenage and twenty-something years.
Access To Medical and Dental CareSome craniofacial teams will treat patients into their mid twenties, but others will not. What are you to do? Prepare early by having conversations with your physicians about whom they feel would be the best physicians to go to for treatment once your teen or young adult ages out of the children’s hospital. Ask good questions of your physicians to see which doctors are qualified enough to continue your teen’s care. Talk to friends in CCA. CCA adults or families with children slightly older than your own have a wealth of lived experience. Tap into this knowledge base and determine what information could be useful to your situation. Also American Cleft Palate Craniofacial Association, the accrediting board for craniofacial teams, partnered with us to provide a list of their accredited teams. This valuable contact information could be used to inquire as to whether there is a medical professional near you that could help with orthodontia, plastic surgery, or ear, nose, and throat issues that crop up as your teen moves into adulthood. If your young adult or teen moved for college, perhaps looking at the list of providers on the ACPA list will help them find a place for medical care in the state where they are attending university.
The best advice is to be kind, early and often! Cultivating positive relationships with your physicians and their support staff will benefit you in a big way in the long term.
Social and Emotional WellbeingAging out of the medical system is a huge challenge, but arguably finding mental health support can be an even larger one. Typically, when looking for psychological support, you are in the throes of depression, anxiety, or some other negative mood state making it difficult to plan appointments, keep up with medication, and pave new paths to service providers. Stigma-based barriers to care also prevent one’s ability to access care. A recent Boston Globe article reports that “in 2018, nearly 9 percent of the United States 18 to -25 year olds reported having had a major depressive episode in the previous year so severe that it hindered day-to-day life, according to federal data. Just over half of those young adults reported receiving treatment.” Young adults with craniofacial differences are even more unlikely to seek treatment for their mental health, after years of trauma and bullying.
With that in mind, it is vital that psychological services begin at a young age, and continue after high school graduation. Intentionally talking about these issues as a family is difficult, but could prove life saving. As part of the summer preparations between high school graduation and college or career begin, be sure to discuss with your teen the plan for treatment, and request an appointment with the social worker or psychologist on staff near the college or workplace where your child will reside. Again, as with medical care, go back to the craniofacial team for recommendations for providers. Even if they did not have a mental health professional on the team, the nurses and surgeons should have referrals on hand. Additionally, social workers or hospitalists may be able to help coordinate care moving forward into college or around work schedules.
Mental health is not all about getting the right provider, it is also inextricably linked to our social lives. As humans we are social beings, we need to be in the presence of others. If your teen or young adult is not going to college, perhaps look into work or volunteer opportunities, a day program, or some more structured support tailored to your teen’s needs. During the ongoing COVID19 pandemic, creating community is hard work. You have to seek out and implement new ways of getting your social needs met. Searching for online gatherings around a favorite topic through the website Meetup.com, or joining a support group filled with others who have experienced similar challenges in their lives can be life-affirming. In addition, nonprofit organizations, museums, and cultural institutions are offering a variety of different virtual programming opportunities that could allow you to grow your personal network. Reach out to CCA for referrals and other ideas if you are feeling stuck.
Legal and Financial StabilityLegal and financial issues are overwhelming for all, but taking the process one step at a time will lead you on the path to success. For the medically complex child, start today by asking questions and doing research on everything from power of attorney, court approved guardianship and more. Organizations like Family Voices, Legal Zoom, your regional Arc, and local-state legal aid are extraordinarily helpful in the quest to find answers to what could be the right fit for your family’s needs. A conversation with a lawyer or law school student could reveal a way forward when planning for what works best for your family and child.
Financial resources are available, too. Financial advising is not only for the rich and famous. Some banks offer services for families that have more moderate incomes. Nonprofits, like the Arc and Family Voices, can help families of all socio-economic backgrounds. Do your homework on websites like Special Needs Answers. Additionally, Merrill Lynch and MetLife have life insurance and special needs calculators to help prepare you for conversations with a financial advisor, too. A financial advisor will be able to walk you through how to keep government aid, like medicaid, or state-sponsored health insurance in place after the magic ages of 18 and 26.
Young adulthood is an exciting time. We hope these tips make the transition from teen to twenty-something smoother for your family. For additional tips about transitioning into adulthood, please read our newest educational overview, Healthcare Transition: A Q & A Guide For Parents by Dr. Judy Lu Kim, MD and Dr. Jordan Kemere, MD, Assistant Professors at Baylor College of Medicine. Or review an older but still relevant piece by Judy Tyler, LMSW, “As Your Teen Gets Older: Preparing For the Next Steps."
Please feel free to reach out to CCA for more information. We would be happy to point you toward resources specifically tailored to your needs.