CHAPTER 26 Transition to Adult Medical Care Peter J. Smith, MD, MA, FAAP Introduction This chapter provides an overview of the many challenges to achieving transition in health care for young adults with developmental-behavioral disorders. It provides an overview of the complexity of the issues across systems, policies, practices, and beliefs, from the personal level to the population level. The resource section at the end of this chapter provides primary pediatric health care professionals with some current assets that may enable them to better achieve transition for their patients with developmental-behavioral disorders or special health care needs, leading to improved outcomes for all involved. “For in every adult there dwells the child that was, and in every child there lies the adult that will be.” John Connolly, The Book of Lost Things What Is Known? As a result of improvements in living conditions and medical advances over the last few decades, individuals with developmental-behavioral disorders have experienced an increase in life expectancy. Prior to these improvements, children with developmental-behavioral disorders were primarily cared for by pediatric health care professionals in pediatric systems of health care. For the purposes of this chapter, we will consider children with developmental-behavioral disorders as those children with functional impairments in cognitive (including learning and intellectual disabilities), neurobehavioral (including attention-deficit/hyperactivity disorder [ADHD], autism spectrum disorder [ASD], and other neuropsychiatric disorders [eg, anxiety disorders, mood disorders, thought disorders, and posttraumatic disorders]) and motor (including cerebral palsy, muscular dystrophies, and spina bifida) development. The transition to adult health care is complicated in part by a bifurcated pediatric and adult health care system. Health care benefits may also change because of age-out limits for public insurance programs; loss of access to comprehensive, medically necessary services guaranteed by early and periodic screening, diagnostic, and treatment service regulations; and changes for individuals receiving Supplemental Security Income (SSI). Across the United States, pediatric and adult health care systems vary tremendously with differences related to geography (eg, urban versus rural), affiliations with academic health systems and publicly funded systems, availability of care coordination supports, and access to insurance. Furthermore, the adult health care system differs from the pediatric system in structure (eg, availability of social work support) and processes (eg, shared decision making, roles of primary and specialty providers) as well as in experience and capacity to accept younger adults with certain childhood-onset conditions. All adolescents and young adults, regardless of disability status, who grow out of pediatric care transition to adult medical care; however, many may not have the knowledge and skills to navigate new adult care systems. In order to successfully transition to adult health care, adolescents and young adults need support and guidance from their families, referring pediatric providers, and accepting adult providers. However, only 40% of Youth With Special Health Care Needs (YSHCN), which includes youth with developmental-behavioral disorders, receive the necessary supports and services to successfully transition to adult health care, work, and independence, with this rate being even lower for minority and low-income YSHCN.1 Moreover, youth with developmental-behavioral disorders experience disparities in transition services, and youth with autism spectrum disorder (ASD) are significantly less likely to receive health care transition services than youth with other special health care needs.2 Youth with ASD and a comorbid developmental disability are even less likely to receive health care transition services.2 Without support, youth with developmental-behavioral disorders are especially at risk of serious consequences of a poorly coordinated transition. They are at risk for lapses in primary and subspecialty care, increased emergency department utilization, poorer health outcomes, and worse quality of life.3,4 When planning transition for young adults with developmental disabilities, common concerns are issues related to self-determination and supported decision-making. Guardianship is one example of a legal process to appoint a guardian for an individual deemed to have incapacitated decision-making capacity. All persons are deemed capable before the law until it can be demonstrated before a court that the person requires some supervision.5 In addition to assessing competency to make medical decisions, other skill areas that are reviewed include general supervision and safety, finding housing, employment, education, buying and selling property, making contracts, and controlling one’s finances. Alternatives to full guardianship (eg, limited guardianship, representative payee, or power of attorney) exist and should be explored to guarantee that individuals with developmental disabilities retain as much autonomy as they are able. Primary pediatric health care professionals serving youth with developmental disabilities should be keenly aware of the need for guardianship determination by 18 years of age and should advise patients and families according to current state policy, practices, and procedures. Avoiding doing so could create a situation where a child without the ability to make medical decisions is in a vulnerable position, and his or her parents are blocked from participating until a court determination of guardianship is established.6 During the process of health care transition, there are 4 main stakeholders: patients, families, referring health care providers, and receiving health care providers. Each of these groups has specific roles and responsibilities to promote a successful transition process. What Are the Goals? Across groups, there is a shared goal to promote the individual patient’s effective navigation of the complicated health care system, or, more simply stated, to promote that the individual patient does not fall through the cracks. However, each group also has unique concerns and apprehensions. As adolescents with developmental-behavioral disorders transition to adult care, it is especially important for them to feel that clinicians maintain respect for their personal autonomy. Even though this goal is universal across different patient populations, it is especially important for young adults with known cognitive disabilities that their health care professionals presume that they possess decision-making capacity. Health care professionals can help this process by becoming more knowledgeable about these issues and achieving better practice though specific training in interviewing and examination to both assess decision-making capacity and support the autonomy of patients with developmental-behavioral disorders.7 Providers may use a transition readiness tool to assess self-management skills and track mastery of important health competencies. Even though transition-age youth and their families both share the same goals, there is a tension for parents within their relationships with their children: They must balance their competing goals of wanting to empower their children to achieve maximal independence while simultaneously wanting to promote their children’s safety. Of course, this is a universal tension in all parenting. However, because individuals with developmental-behavioral disorders experience unique risks during their time as adolescents and into adulthood, their parents have unique tensions to resolve.8 Different types of health care providers have different goals for the process of transition. Primary pediatric health care professionals want to find knowledgeable and compatible adult health care professionals who are willing to accept patients with developmental-behavioral disorders. Adult health care professionals who accept these patients want to provide quality care for a patient population with whom they are likely less familiar. These issues are described in more detail in the American Academy of Pediatrics (AAP) policy statement, “A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs.”9 “The best laid schemes o’ Mice an’ Men, Gang aft agley.” Robert Burns, To a Mouse What Are the Barriers? There are at least 2 major types of barriers for individuals with developmental-behavioral disorders that stand in the way to successful transitions. The first category of barrier is institutional and administrative, and the second is attitudinal. Both types of barriers are important, and they also frequently interact dynamically. The institutional and administrative health transition barriers identified for youth with developmental-behavioral disorders and their families are as follows: (1) lack of information about the transition process and available adult health care providers; (2) lack of explicit and continuous attention to youth’s needs for decision-making supports; (3) reticence among caregivers about relinquishing care and decision-making responsibilities; (4) difficulties in letting go of long-standing pediatric relationships; (5) difficulties finding adult providers available to care for young adults with developmental-behavioral disorders; (6) low utilization of medical and behavioral health care, changes in program eligibility for adult services, insurance, and disability assistance; (7) lack of coordination and communication between pediatric and adult providers to facilitate a smooth transition; and (8) inadequate care coordination support and funding for activities to manage the transfer and integration to adult care. Lack of adequate reimbursement for the often time-consuming and difficult tasks of care management leads either to health care teams that are struggling to stay financially viable if they try to offer this important portion of care or to health care teams that limit or entirely avoid accepting patients with significant developmental-behavioral disorders into their practices. Furthermore, there are significant challenges related to payment structures. For example, the chapter structure of the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM
Kruti R. Acharya, MD, FAAP
Stephen H. Contompasis, MD, FAAP
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