By Lori Tremmel Freeman, BS, MBA
Chief Executive Officer, AMCHP
As you read this issue of Pulse focused on children and youth with special health care needs and transition, I'm going to ask you to take a few moments to imagine and to place yourself in a challenging situation.
Imagine you're sick or injured in some way. You are a fully grown adult with special health care needs. When you logically seek care from your adult health care provider, who you want to trust, you are given the wrong advice or care. You sense this has occurred and may even continue to suffer further injury, but you aren't sure what to do. You are living alone and are your only support system. Finally, as a last resort, you reach back across distance and time to consult with the pediatrician from your childhood to help. At least your childhood physician knows you well and understands your unique challenges. Through this process, you learn that what was originally a minor injury has become much more serious because of misunderstanding and incorrect diagnosis.
To overstate the obvious, children and youth with special health care needs (CYSHCN) grow up to be adults with special health care needs. And, there are all varieties of social, environmental, economic and other conditions that further complicate the transition and require real skills to address and navigate.
Unfortunately, the simple example provided here is a very real scenario that demonstrates a challenge faced by an adult with special health care needs that did not receive proper care within the health care system due to ignorance and lack of training. Sadly, it probably happens more often than not.
At the 2015 AMCHP Annual Conference, the organization had the pleasure of hearing from Ian Watlington, a disability advocate, who is all too familiar with this example. In fact, this example is based on one of Ian's stories that he shared with us during his talk about a broken ankle. When Ian was transitioning in his adult life after growing up in Denver, Colorado surrounded by a solid family and health care systems support, he had some real challenges in Washington, DC. He notes that the health care system "continues to be a maze" and that he has "yet to find the cheese." Ian says, "Since the cheese remains allusive, I depend on telephonic support and consultations from physicians in Denver."
I learned a lot from Ian in the short time that I've made his acquaintance. Here are some of my personal takeaways from chatting with Ian and getting to know him leading up to our conference.
We need to engage with and listen to the child, youth and adults with special health care needs directly. Although Ian is very vocal about having been raised by a tremendously supportive single mom and amazing grandparents, he often attributes self-reliance and self-advocacy among the greatest gifts they bestowed on him. Early on in his life, he learned how to effectively articulate and communicate his needs to adults. He was given permission to question authority, with respect, and taught that if something cannot be said directly to him then it probably shouldn't be said at all.
If we are truly serving the population of CYSHCN, then we need to figure out who is best positioned and responsible for influencing the overall training of medical professionals so that they can treat CYSHCN after they transition to adulthood. With Ian's example, we know that ignorance remains in the health care provider system with regard to the treatment of relatively basic injuries. There are still issues with adult coordinated care and unintended discrimination related to the treatment of injuries.
Lastly, Ian taught me about the value of respecting the person regardless of whether they are a child, an adolescent, a young adult or a grown adult with special health care needs. He spoke passionately of the "dignity of risk," of the value of letting kids stumble. Overprotection by parents (which is natural of course) and even by systems (educational, health and other) does not really invite the kind of self-awareness and self-advocacy Ian so strongly believes in that shaped the adult he has become. He is stronger and more capable because of the risks he's been permitted to take in his life.
I would be remiss if I didn't mention some of the excellent work being done to help address some of these transition concerns. The AMCHP Standards of Systems of Care for Children and Youth with Special Health Care Needs represent a solid effort to document the recommended practices related to transition. Transition to adulthood is one of the core domains for the system standards. Within the overall recommended system outcomes, transition to adulthood is specifically addressed in order that "youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence." The recommended system standards address what should be occurring in the framework of both pediatric and adult settings. Additionally, the standards use existing national system definitions, principles and frameworks that might be helpful to reference including: a) a report from the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians on supporting the health care transition from adolescence to adulthood in the medical home (Pediatr. 2011;128:182); and b) the Six Core Elements of Health Care Transition 2.0 from Got Transition and the Center for Health Care Transition Improvement.