Supporting Youth With Special Healthcare Needs

By Barbara Jandasek, Ph.D.

Over 10 million children in the United States have special healthcare needs. These conditions include chronic physical, developmental, behavioral, or emotional issues that require special and/or more intensive healthcare services. Aside from obtaining care from and collaborating with healthcare professionals, families of children must manage these conditions on a day-to-day basis and coordinate responsibilities for illness management with one another. As youth mature, families renegotiate these responsibilities in order to accommodate changing social contexts and expectations.

February 2012 Vol. 28, No. 2

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This article was published in the Brown University Child and Adolescent Behavior Letter
in cooperation with Bradley Hospital.

These shifts prepare youth for eventual independence so that, as adults, they will be able to manage their health on their own. Although youth may be well practiced at taking care of their health conditions on a day-to-day basis (for instance, older children with asthma are likely to identify asthma exacerbations, make decisions about when to take their quick relief inhaler, and take medicine with minimal adult prompting or supervision), there are several additional responsibilities for which young adults are primarily responsible. These tasks involve navigating the complex and confusing healthcare system: scheduling and attending medical appointments, filling prescriptions, and accessing and understanding health insurance coverage policies.


Over the past decade, healthcare professionals have become increasingly aware of the challenges involved with preparing youth for the transition to adulthood and adult medical care. Much of this awareness arose out of an increased need for medical services for health conditions previously designated as "pediatric" (e.g., spina bifida). Due to medical advances, we have been blessed by dramatic improvements in medical care, life expectancies, and quality of life of individuals affected by these same health conditions. These changes, however, have revealed a dearth of services and adult providers trained to address these unique healthcare needs.

Even for youth with health conditions that commonly affect both pediatric and adult populations (such as asthma), the concern of providing youth with adequate supports is well warranted. Several factors place young adults at risk for poor health outcomes and can make this transition difficult. First, changes in social contexts, like moving away from home and new environments that require greater autonomy (high school vs. college) may disrupt effective disease management. In their new settings, youth are often required to manage health tasks without supervision or prompting. With these changes, young adults are less likely to fill prescriptions or maintain regular contact with a healthcare provider. They also are less likely to make use of preventive health services, delaying routine healthcare, and relying more heavily on emergency and acute care.

Also, young adults often engage in risky behaviors that may negatively affect their health. For example, smoking is higher among young adults compared to both adolescents and older adults. This pattern holds true even among young adults whose health conditions are directly impacted by this behavior. Additionally, tendencies to engage in negative health behaviors are often linked, such that a youth who smokes may also be less likely to take medications and ignore problematic health symptoms.

Finally, although chronic health conditions require continuous medical management and collaboration with physicians, youth commonly experience significant medical transitions. Youth receiving care from pediatricians or pediatric specialists must find and obtain services from new healthcare providers servicing adult populations. Even those receiving care in a family practice, where they may not necessarily have to transition to another healthcare provider, must develop an understanding of issues related to consent for medical treatment and choices regarding the privacy of their personal health information. Finally, compared to other age groups, young adults are at highest risk for lack of health insurance coverage because of decreased access to coverage either through their parents or through public insurance.

Standards of care

How can we help to prepare youth for a time when they must take charge of their health? Ideally, increased accountability for illness management should occur in a gradual, planned, and systematic manner and within a supportive system, under the supervision of parents and a continuous healthcare provider. This support may protect against poor adherence to medical regimens, lack of follow-through with necessary healthcare, and preventable health problems.

In 2002, the American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), and the American College of Physicians (ACP) collaborated to create a consensus statement on healthcare transition services.1 This work called attention to this important issue and was seminal in generating standards for the implementation and evaluation of clinical practices, and generating the growth of new transition programs and initiatives.

Several iterations of updated and improved standards have followed. The most recent, "Supporting the Health Care Transition from Adolescent to Adulthood in the Medical Home" provides an algorithm based upon the youth's age and clearly articulates recommendations for healthcare providers to follow.2

Some practice recommendations include:

  • Adopting explicit documentation and office procedures for handling healthcare transitions.
  • Initiating conversations about transition planning early, when youth are around 12 to 14 years old.
  • Conducting regular assessments and documentation of the transition process.
  • Presenting youth with repeated opportunities to practice skills under the supportive supervision of a continuous healthcare provider and their family.
  • Providing information and training relevant to tasks beyond day-to-day illness management, including filling prescriptions, accessing health insurance, etc.
  • Collaboration and communication between pediatric and adult healthcare providers to facilitate coordination of care.
  • Maintaining attention to the transition needs after youth have transitioned to the adult model of care, through their early to mid-twenties.

Also, it is notable that young adults often experience multiple healthcare settings due to circumstances such as pursuing college education or military service. Settings such as these are less likely to provide stable, coordinated, and comprehensive care, and may be insufficient to address the complex healthcare needs of chronic health conditions. In these circumstances, it is recommended that youth are prepared for this change in advance and are either well-established with an adult provider prior to this change or remain with their previous pediatric care provider while receiving care on-site, as needed.

Continue Room For Growth

Although explicit guidelines and resources for the transition process have been developed, current practices continue to fall short of these standards. For instance, transition strategies are often abrupt and guided by life events associated with young adulthood (e.g., graduation, moving) without adequate preparation or consideration of patients' clinical and developmental needs.

Two recent studies examined national and statewide trends of healthcare transitions (References) using data from the 2005-2006 National Survey of Children with Special Health Care Needs (NSCSHCN) and the 2010 Current Population Survey (CPS) of families of children (ages 12-17 years) with special healthcare needs.3,4 Four indicators of the transition process were examined including whether the healthcare provider had 1) encouraged the youth to take increased responsibility for their own healthcare, or initiated discussions regarding; 2) the transition to adult healthcare; 3) the youth's changing healthcare needs; and 4) health insurance.

Findings indicate that, on a national level, less than half of youth had received comprehensive transition services. Wide variability in transition services was documented across states and across tasks. In addition, patterns of transition services and state demographic profiles indicate unsettling health inequities. For instance, transition services may be less available for youth who are Hispanic and Black, compared to non-Hispanic White youth, as well as for those youth who are living in poverty, lack health insurance, or are on public insurance.

Underlying reasons for these inequities are not yet understood but are most likely multifaceted. Limitations of the healthcare system, including the ability to recognize and address families' linguistic and healthcare literacy needs and their diverse health beliefs and management styles likely play a role. Contributing factors may also include patient and families' limited access to healthcare, differential sources of primary care, low levels of awareness, and advocacy of transition services and recommendations. Clearly integration of transition resources represents a continued effort and much work is needed. Services must be tailored to ensure our ability to meet diverse family needs. Outreach should take place across various healthcare and organizational settings, including community-based organizations, to increase awareness. Finally, transition procedures should attend to cultural needs and beliefs of families.

Barbara Jandasek, PhD, is an Assistant Professor (Research) in the Department of Psychiatry and Human Behavior at the Warren Alpert Medical School of Brown University and Staff Psychologist in the Child and Family Psychiatry Outpatient Department at Rhode Island Hospital.


1. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine: A consensus statement on healthcare transitions for young adults with special healthcare needs. Pediatrics 2002; 100:1304-1306.

2. Cooley WC, Sagerman PJ; American Academy of Pediatrics, Transitions Clinical Report Authoring Group. Clinical report - supporting the healthcare transition from adolescence to adulthood in the medical home. Pediatrics 2011; 128(1):182-200.

3. Kane DJ, Kasehagen L, Punyko J, et al.: What factors are associated with state performance on provision of transition services to CSHCN? Pediatrics 2009; 124(S4):S375-S383.

4. McManus P, Rogers K: Healthcare transition for youth with special healthcare needs: An analysis of national and state performance. Report for the National Alliance to Advance Adolescent Health. Got Transition? The National Health Care Transition Center. January 2011.