4
Health Care Transitions for Young People

When our son was 3 months old, he was diagnosed with cystic fibrosis (CF), a progressive, genetic condition that primarily affects breathing and digestion. Soon after his diagnosis, his physician, in his typically family-centered approach, asked me where I wanted my son to be in 20 years. I can remember being a little confused by his question. I was still very focused on getting through each day and really did not have much energy to think beyond taking 1 day at a time. He persisted. Where did I want my son to be in 20 years? What had I wanted for him before he was diagnosed? Forced to think about it, I finally said that we were hoping that all of our children would be able to go to college. His response was very positive and explained that because CF would mean physical limitations, it would be wise to think of ways that our son could make a living using his mind. He said that planning for college was one way to begin thinking about the future. For him to go away to school, we would also need to begin to think of ways to help him gradually assume more responsibility for his own health care.

Donna Olsen (Olsen and Swigonski, 2004 [used with permission])


For children with cystic fibrosis, congenital heart disease, spina bifida, and other conditions that once were often or always fatal in infancy or childhood, what might earlier have seemed a fantasy of the future—planning for college and work life—is now a reality for many families. Depending on an individual child’s physical and mental condition, that planning may have some special dimensions, such as particular attentiveness to the presence of physical barriers or hazards in the home or to the capacity of schools to provide a safe and positive environment. When it is done sensitively, as described in the account above, an early focus on long-term planning for the child’s transition to adult life can help enlarge a family’s range of concerns to include not only their child’s immediate medical situation but also the child’s future—even when a shortened life expectancy is still likely, given current therapies.

The story of Donna Olsen and her son also illustrates that health and disability—like most of life—are dynamic and not static for both individuals and societies. With advances in biomedical science and technology, many people with early-onset health conditions are living years, even de-



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The Future of Disability in America 4 Health Care Transitions for Young People When our son was 3 months old, he was diagnosed with cystic fibrosis (CF), a progressive, genetic condition that primarily affects breathing and digestion. Soon after his diagnosis, his physician, in his typically family-centered approach, asked me where I wanted my son to be in 20 years. I can remember being a little confused by his question. I was still very focused on getting through each day and really did not have much energy to think beyond taking 1 day at a time. He persisted. Where did I want my son to be in 20 years? What had I wanted for him before he was diagnosed? Forced to think about it, I finally said that we were hoping that all of our children would be able to go to college. His response was very positive and explained that because CF would mean physical limitations, it would be wise to think of ways that our son could make a living using his mind. He said that planning for college was one way to begin thinking about the future. For him to go away to school, we would also need to begin to think of ways to help him gradually assume more responsibility for his own health care. Donna Olsen (Olsen and Swigonski, 2004 [used with permission]) For children with cystic fibrosis, congenital heart disease, spina bifida, and other conditions that once were often or always fatal in infancy or childhood, what might earlier have seemed a fantasy of the future—planning for college and work life—is now a reality for many families. Depending on an individual child’s physical and mental condition, that planning may have some special dimensions, such as particular attentiveness to the presence of physical barriers or hazards in the home or to the capacity of schools to provide a safe and positive environment. When it is done sensitively, as described in the account above, an early focus on long-term planning for the child’s transition to adult life can help enlarge a family’s range of concerns to include not only their child’s immediate medical situation but also the child’s future—even when a shortened life expectancy is still likely, given current therapies. The story of Donna Olsen and her son also illustrates that health and disability—like most of life—are dynamic and not static for both individuals and societies. With advances in biomedical science and technology, many people with early-onset health conditions are living years, even de-

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The Future of Disability in America cades, longer than they did in the past, although often with some degree of physical or mental impairment. In addition, advances in early diagnosis and treatment for heart disease, stroke, and other serious chronic diseases associated with aging have meant longer survival—also with various degrees of impairment—for many people in middle and late life. Disability and health are dynamic in other respects. Over time, some health conditions, such as certain forms of multiple sclerosis and arthritis, exhibit a significant course of waxing and waning that affects the ease or difficulty that people with these conditions have performing daily activities and underscores the significance of environmental characteristics, such as the accessibility of transportation systems. People with other conditions, such as Down syndrome, tend to exhibit periods of long-term stability, although changes in their environment may enlarge or reduce the scope of their activities and participation. Yet other health conditions are characterized by a fairly steady course of increasing impairment (which happens with amyotrophic lateral sclerosis) or improvement (which is typical for certain types of serious injuries). The promotion of health and well-being and the creation of supportive environments play a part in the dynamics of disability in all these pathways. Research on risk factors for disability has highlighted the interaction between individual characteristics and physical and social environments as a critical dynamic in the development of disability. This interaction was a theme in the Institute of Medicine (IOM) reports Disability in America (1991) and Enabling America (1997). In addition, the latter report identified the study of change over time and transitions to different states of physical and social functioning as essential dimensions of disability and rehabilitation research. Indeed, the report defined rehabilitation research as “the study of movement among states [that is, pathology, impairment, functional limitation, and disability] in the enabling-disabling process” (IOM, 1997, p. 25). Anyone can experience an injury or illness that unexpectedly and dramatically alters his or her life. Moreover, as described in Chapter 3, people who live long enough are very likely to develop disabilities, although the pathways of disabilities in late life may still be quite variable. Using data from the Women’s Health and Aging Study, Guralnik and colleagues (see, e.g., Ferrucci et al. [1996] and Guralnik et al. [2001]) have identified two distinct types of disability onset in later life: the sudden, catastrophic onset of multiple limitations (which often happens with a stroke or a traumatic injury) and the slow, steadily progressive decline in functioning (which often occurs with osteoarthritis or congestive heart failure). Other studies are revealing the diverse, recurrent, and episodic nature of many of the disabilities that occur in late life (see, e.g., Fried et al. [2001], Gill and Kurland [2003], Hardy et al. [2005], and Gill et al. [2006]). This variabil-

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The Future of Disability in America ity underscores the importance of continued research on the biological and environmental risk factors for disability. In addition to experiencing function-related transitions, people with disabilities experience a range of other transitions, many of which mark common social milestones, such as starting school or work or moving out of the family home. This chapter examines one especially dynamic period of transition: that experienced by children and youth with disabilities as they become adults and move from the pediatric to the adult health care system. For young people with disabilities, a poor transition in this arena of life can threaten their health and undermine other transitions, for example, in education, work, social relationships, and independent living. The chapter begins by placing the transition from child to adult in the broader context of changes and risk factors for disability that can be studied throughout the life span. It then discusses the population of young people at particular risk for problems with health care transitions and examines goals for successful transition planning. The remaining sections examine child and family characteristics that may affect transitions, relevant public policies and other environmental factors that may ease or complicate those transitions, models of care for children and adults with chronic health conditions and disabilities, and approaches to health care transitions for young people with disabilities. The chapter concludes with the committee’s recommendations. Chapter 5 follows with an examination of related but different dynamics: aging with disability and the development and prevention of secondary conditions. TRANSITIONS TO ADULT CARE IN A LIFE SPAN PERSPECTIVE As used here, a transition involves a significant change or set of changes in a person’s life circumstances during a relatively limited time period rather than over the life span. Transitions may involve changes in social roles (e.g., from a minor to a legal adult), changes in living arrangements (e.g., from the family home to an independent living arrangement or from the family home to an institutional setting), or changes in functioning related to events such as traumatic injuries. Over a life span, a person will typically experience many transitions, with the transition to adult life being one of the most momentous. Adopting a life span or life course perspective on health, disability, and transitions reinforces the understanding that disability is dynamic and that a physical or social transition is a process rather than a point in a person’s life. It also involves the seemingly simple recognition that what happens earlier in life affects what happens later (Meaney and Szyf, 2005; Champagne and Meaney, 2006). Research has focused particularly on the health and other consequences for adolescents and adults of what happens

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The Future of Disability in America in childhood in such areas as family relationships, peer interactions, education, nutrition, health care, and exposures to such obvious hazards as air pollution or violence (see, e.g., Kuh and Ben-Schlomo [1997], Thyen et al. [1998], Dell and To [2001], Sears et al. [2002], and Forrest and Riley [2004]). A number of conditions that commonly affect adults—including heart disease, diabetes, certain cancers, asthma, and obesity—are associated with childhood environments that can affect a child’s physiology or shape personal behaviors that persist into adulthood (see, e.g., Seidman et al. [1991], Rona et al. [1993], Barker [1997], and Shaheen [1997]). In addition, physicians and families are also becoming more aware that some unwanted effects associated with the improved survival rates for premature infants and the successful treatment of cancer and other childhood illnesses may not be evident for years (Perrin, 2002; Brandt et al., 2003; IOM, 2003a, 2006a; Castro et al., 2004). For example, a recent large, retrospective study that compared the survivors of childhood cancer with their siblings reported that 62 percent of survivors but only 37 percent of their siblings had at least one chronic condition; 28 percent of the survivors but only 5 percent of the siblings had a severe or life-threatening condition (Oeffinger et al., 2006). If accurate information about these childhood experiences, conditions, and treatments does not accompany a young person as he or she makes the transition to health care as an adult, the primary care or specialist physicians treating that person may fail to adopt or recommend appropriate monitoring and preventive measures. At a general level, taking a long view of disability across the life span requires a significant, sustained investment in longitudinal research. Chapter 2 stressed this point as it applies to epidemiological research. It applies equally to clinical and social intervention research, including research related to transitions for young people, aging with disability, and secondary conditions. Unfortunately, in both health care and policy research, very long-term studies, which tend to be costly and complicated to administer, are the exception rather than the rule, particularly for younger populations. One such exception is the National Children’s Study, which was described in Chapter 2. As important as this study will be to the identification of risk factors, it will not include the range of data needed to track transitions and identify variables associated with successful transitions for young people. A CRITICAL TRANSITION: FROM CHILD TO ADULT Systematic attention to health care transitions for young people dates back more than two decades. In 1989, the U.S. Surgeon General convened a conference on the topic that built on a smaller 1984 conference with the same theme (Magrab and Miller, 1989). Currently, the U.S. Maternal and Child Health Bureau (MCHB; which is part of the Health Resources and

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The Future of Disability in America Services Administration of the U.S. Department of Health and Human Services) has made the following one of its six primary goals: “[a]ll youth with special health care needs will receive the services necessary to make appropriate transitions to adult life, including adult health care, work, and independence” (McPherson et al., 2004, p. 1538).1 MCHB funds the development and evaluation of model programs on transitions and also funds the Healthy & Ready to Work Center to promote successful transition planning and outcomes (see www.hrtw.org). The National Institute on Disability and Rehabilitation Research has supported projects that conduct research on health care transitions, prepare informational materials for young people and their families, and develop guidance for health care professionals. To cite a few other examples, the American Academy of Pediatrics (AAP) (see below), a number of states, and several medical centers and children’s hospitals have developed transition resources or programs. In the United Kingdom, the National Health Service also supports research on transitions (NCCSDO, 2002). Adolescent Population “At Risk” for Transition Statistical data underscore the importance of planning for the transition to adulthood for young people with disabilities. Data from the 2004 National Health Interview Survey indicate that approximately 1.4 million children with some kind of activity limitation were in the 14- to-17-year-old age group, a critical period for transition planning (data supplied by committee consultant H. Steven Kaye, September 5, 2006). More than half of these young people were reported to have a learning disability or attention deficit hyperactivity disorder (or both). Another quarter had a mental health condition or a developmental disability (other than mental retardation). Approximately 70,000 had a limitation in activities of daily living. Data from the U.S. Department of Education (2006c) indicate that over 1.8 million children in this age group received special education services in 2002 and that over 375,000 were age 17 and, thus, soon to turn 18. Data from a 2001 survey of children with special health care needs suggest that perhaps a half a million or more children with such needs turn age 18 each year (Lotstein et al., 2005). As described below, reaching age 18 can trigger critical changes in a young person’s legal, financial, and health care status. Well before they turn age 18 and for various periods of time thereaf- 1 As defined by MCHB, children with special health care needs are “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally” (McPherson et al., 1998, p. 137).

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The Future of Disability in America ter, many young people with disabilities will be involved in an active and complex process of transition planning that reaches beyond their families and health care professionals to include individuals from multiple service sectors, especially the public schools. School transition planning services are discussed later in this chapter. Goals of Health Care Transition Planning for Young People For a young person with a disability or serious chronic health condition, the ultimate goal for the transition from pediatric to adult health care services is to maximize “lifelong functioning and potential through the provision of high-quality, developmentally appropriate [and technically sophisticated] health care services that continue uninterrupted as the individual moves from adolescence to adulthood” (AAP et al., 2002, p. 1304). More specific individual goals include helping young people (consistent with their medical condition) achieve the skills in self-care, health care decision making, and self-advocacy that will prepare them to take more responsibility for their health and health care. For young people with disabilities as a population, the goals for health care transitions include the capacity of relevant health care and social agencies to identify and respond appropriately to different health and personal characteristics, family situations, and physical and social environments. The discussion here emphasizes health care transitions. Successful health care transitions, however, usually require attention to other dimensions of a young person’s life, including living arrangements, transportation, postsecondary education, work, family and other social relationships, and financial self-sufficiency. For example, housing and transportation conditions can affect the ease of self-care and physical access to supportive health care services. Although clinicians do not manage these aspects of a young person’s life, they should be alert to how such factors might support or interfere with a successful health care transition. For many young people with serious disabilities, successful health care transitions will also depend on public policies that support access to health insurance, assistive technologies, personal care services, housing, vocational training or postsecondary education, and income support, as well as public policies that support nondiscrimination in employment and the physical accessibility of transportation and public spaces. Several policies that include specific provisions for transition planning or assistance for young people are discussed below as environmental factors that affect health care transitions.

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The Future of Disability in America INDIVIDUAL AND FAMILY FACTORS AFFECTING HEALTH CARE TRANSITIONS Becoming an adult involves many steps and stages in a complex process. Some steps are fairly abrupt, in particular, reaching legal adulthood. Other aspects of the transition to adult life occur much more gradually and unevenly across different dimensions of a young person’s life. Major domains of transition include transitions from pediatric to adult health care, from school to work, and from living with parents to living independently. The nature of the transitions, including health care transitions, necessarily varies according to the specific situation and the characteristics of the individual young person. Family characteristics and resources will also influence the transitions. The next sections discuss these factors as they affect health care transitions. Individual Factors Box 4-1 summarizes several broad characteristics of health that will affect health care transitions for children. In general, the more complex the young person’s health situation is, the more complex the transition process will be. Children with conditions that are chronic but mild and not dis- BOX 4-1 Characteristics of Child and Adolescent Health That May Affect the Complexity of Health Care Transitions Single health condition Multiple health conditions Low risk of future health problems High risk of future health problems No dependence on medical equipment Reliance on life-sustaining medical equipment Rare acute illness, medically stable Frequent acute episodes, medically unstable Few medications Multiple medications, medication problems No cognitive impairments Profound mental retardation No physical impairments Serious physical impairments Mentally healthy Mentally ill No behavioral concerns Serious behavioral concerns SOURCE: Adapted from Kelly et al. (2002).

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The Future of Disability in America abling (e.g., eczema) or that only slightly impair activities (e.g., mild talipes equinovarus, or clubfoot) may need little if any transition planning, other than that appropriate for most young people. Certain other conditions, such as early-onset schizophrenia, will almost always present major challenges for the transition from pediatric to adult health care. The transitions for young people with many health conditions, such as cerebral palsy or asthma, are much more variable, however. For example, some young people with cerebral palsy have severe physical or mental disabilities that require considerable transition planning, whereas others experience barely noticeable effects of the disorder and therefore do not require the same intensity of attention to their transition to adult care. A small but important group of children and adolescents survive with major assistance from certain technologies, especially respiratory, nutritional, and mobility assistance. With appropriate educational, recreational, and workplace accommodations, these technologies typically allow young people to participate in many kinds of social and other activities. Careful monitoring is, however, important to ensure that equipment (including software) is performing correctly and is adjusted as needed to accommodate developmental, medical, or environmental changes. Planning for transitions in health care and living arrangements and other transitions can be particularly complex for this group of young people. Planning for transitions in health care requires very knowledgeable clinicians who have experience working with this population and their devices in diverse settings. Placing individual or condition-specific differences aside, considerable evidence suggests that young people in general are still developing neurologically, emotionally, and intellectually well into their 20s. They will therefore differ in some respects from older individuals, who comprise the majority of patients seen by most physicians and other health care professionals who care for adults. The creation of adolescent medicine as a specialty was a response to the particular challenges of caring for teenagers and young adults and, in itself, represents a transition strategy particularly attuned to the developmental stage of adolescence, although it does involve an additional health care transition that must be managed. In any case, adult care professionals will be better prepared to manage the health care needs of young people if they have the education and experience that allow them to understand how continuing development may affect risk taking and other decision making by their young adult patients with disabilities. As discussed later, the amount of education that professionals receive in these and other dimensions of health care transitions for young people is minimal. In addition to a young person’s health condition, planning for health care transitions must also consider what the International Classification of Functioning, Disability and Health (ICF) terms “personal factors” (WHO, 2001). These factors include maturity and readiness for self-care, coping

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The Future of Disability in America styles, and personality characteristics. As noted in Chapter 2, the identification and study of these factors are sometimes controversial and may raise charges of blaming the victim and ignoring environmental influences on behavior. Nonetheless, transition planning that does not consider a young person’s behavioral, psychological, and other personal characteristics runs the risk of failure. For example, research on children with asthma has found that adolescents are less likely to adhere to preventive drug regimens than their younger counterparts and, as a result, have poorer control over their condition (Jonasson et al., 1999; McQuaid et al., 2003). Decreasing oversight by parents likely accounts for some of the relationship between increasing age and decreasing adherence to drug or other treatment regimens. In general, as Rosen and colleagues (2003) have observed, “[m]any adolescents with chronic conditions are at higher risk than peers for unnecessary dependency, developmental difficulties, and psychosocial delay” (p. 309). One objective for a successful transition process is to counter these risks by helping young people with disabilities become—and see themselves as—more independent and self-reliant. No clear milestone heralds the readiness of a particular young person to transfer his or her health care from a pediatrician to a health care provider for adults or for other dimensions of the transition to adult life, such as living independently. Several guidelines for transition planning have suggested personal factors that health care professionals, parents, and even young people themselves may consider in assessing readiness (see, e.g., McDonagh and Kelly [2003], Ardoin and Schanburg [2005], Adolescent Transition Project [undated], and Children’s Hospital Boston [undated]). They include maturity of judgment and reasoning skills and a maturity of response to anticipatory guidance and transition preparation; understanding of the medical condition and treatment and the ability to participate in medical visits; self-care skills, including the ability to fill prescriptions, follow prevention and treatment regimens, and seek assistance in an emergency; self-advocacy skills; and medical status and stability. Family and Guardian Factors For most young people with disabilities, families play a critical role in successful health care transition planning and implementation. Health care and social service professionals recognize that various family characteristics, such as education, income, marital status, living arrangements, health

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The Future of Disability in America insurance coverage, and the availability of support from the extended family, can influence health care transitions. Family dynamics are also important. McDonagh (2006), for example, cites research indicating that family support (without overprotectiveness) is associated with emotional resilience and independence in young people with a chronic illness or disability. Other factors, such as differences in child and parent perceptions of the child’s situation, parental discord, and parents’ difficulty in accepting a young person’s increasing maturity, can complicate transition planning, youth readiness for independence, and other outcomes (see, e.g., Resnick et al. [1997], Werner [1997], McDonagh [2006], and Shaw et al. [2006]). Even when young adults have assumed legal responsibility for making decisions about their care, parents often provide practical, emotional, and financial support with the transition process and beyond. When young adults cannot assume such responsibility, parents usually continue as the legal decision makers. For many young people with cognitive impairments, reliance on parental financial, caregiving, and other resources may be much more important than it is for young people with other disabilities (Thorin et al., 1996). For some children with disabilities, state agencies assume the role of guardian and act in lieu of the parents. An analysis of 1998 data found that 14 percent of children in foster care had a disability, usually one involving a cognitive or psychological condition (Smith, 2002). It also found that 20 percent of foster children had not received a clinical evaluation. Although young people with more severe disabilities may receive ongoing support from social service agencies, critics have noted deficiencies in how state foster care programs plan and support the transition from child to legal adult (see, e.g., English et al. [2003, 2006] and Reilly [2003]).2 Some have recommended the extension of Medicaid coverage to age 21 to assist young people leaving the foster care system (CPPP, 2001). ADOLESCENT TRANSITIONS, PUBLIC POLICY, AND OTHER ENVIRONMENTAL FACTORS One milestone in becoming an adult is marked by a distinct and abrupt role shift—that from legal minor to legal adult, usually at age 18. Still, the parents of young people with complex health challenges often remain deeply involved in making decisions about the young person’s health care 2 Of the approximately 280,000 children of all ages who left foster care in 2004, 8 percent were described as emancipated (by virtue of reaching age 18 or meeting other state criteria, such as living independently and being financially self-supporting), 2 percent were runaways, and 2 percent transferred to another state agency (ACF/DHHS, 2006).

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The Future of Disability in America and other matters, although they may no longer be legally responsible. At the same time, before an adolescent has the legal authority to make decisions about his or her own health care, pediatricians, parents, and others tend to give increasing weight to the young person’s views, preferences, and perceptions (AAP, 1995; IOM, 2004b).3 Turning age 18—or age 20 or 22, for that matter—may bring other age-triggered transitions. Among the potentially more consequential of these is the transition from being covered by a parent’s employer-sponsored health insurance or by Medicaid (or other public insurance for children) to being uninsured. In addition, poor children with disabilities who have qualified for Supplemental Security Income (SSI) must, when they turn 18, undergo a new assessment to determine whether they meet the eligibility criteria applied to adults (Loprest and Wittenburg, 2005). Various federal-state programs for children with special heath care needs have upper age limits of 18 to 21. Planning for age-related transitions for these programs is particularly important for children who have complex chronic conditions or disabilities and who are poor. In addition, child health care professionals and organizational providers may have their own age-based policies for transferring young patients to professionals or providers providing adult services, although they will usually work with young people with serious chronic problems or disabilities and their families to plan the transfers of care and smooth the transition (Reiss and Gibson, 2006). The involvement of multiple providers and service agencies with different policies will, in some respects, add to the complexity of the transition. For young people with disabilities, a number of federal and state policies may directly or indirectly support or complicate transition planning. The rest of this section briefly describes policies related to health insurance and other health programs, income support, and public education. The focus is on their possible relevance to the health care transition process. Medicaid and Other Public Health Programs As described in Chapter 8, children with special health care needs or disabilities are slightly more likely than their peers to have health insurance and are particularly more likely to have public health insurance, primarily through Medicaid. Approximately 29 percent of children with special health care needs but only 17 percent of other children have Medicaid (For 3 Under certain circumstances, young people under the age of majority may acquire the authority to make their own decisions about health care and other matters. State policies vary; but these circumstances typically include living independently of one’s parents by virtue of marriage, military service, or financial independence (Campbell, 2004).

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The Future of Disability in America BOX 4-5 Examples of Barriers to Care Coordination and Transition for Young People with Disabilities Involvement of multiple service delivery systems and, possibly, multiple care coordinators with no organized system overall for care coordination Lack of clearly defined or agreed-upon roles for each member of the primary health care practice team and the specialty team, the family, and educational and social services agencies Inadequate communication among health care professionals and the other organizations involved in the young person’s care Inadequate knowledge about community resources and the process of coordinating care and transitions Insufficient reimbursement for the knowledge, time, and administrative work required to effectively coordinate care and care transitions Language and cultural barriers SOURCES: AAP (1999a) and McDonagh (2006). analysis, which focuses on the challenges facing the primary care pediatrician. Given that different providers, funding programs, and social services agencies may need to be involved as a young person moves from pediatric to adult health care, the potential for care coordination difficulties is likely to multiply during that transition. A small survey of primary care physicians (n = 13) with experience in transitions reported that the most significant barriers to the process were difficulty finding an adult health care provider, youth resistance to the transition, family resistance to the transition, and a lack of institutional support for the process (Scal, 2002). The physicians generally reported success in dealing with youth and family resistance, however. Others have described similar transition barriers. For example, Tuffrey and Pearce (2003) identified the following barriers to the transition placed by the patient, the family, and the health care provider (see also the work of Koop cited in Magrab and Millar [1989]). Young person. Young people, particularly young people with complex conditions who have spent years with the same pediatric care team, may see the transition process as abandonment and may feel uncomfortable or threatened by the style of practice of physicians who care for adults.

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The Future of Disability in America Family. Parents, too, may see the transition from the pediatric care team as abandonment. They can also feel threatened by the loss of authority over care for an adult child, especially if the adult health care provider is not sensitive to parental anxieties and to parental involvement in their child’s ongoing process of achieving independence. Pediatrician. Pediatricians may be reluctant to initiate a transition. They may also see physicians who care for adults as less prepared to provide comprehensive, developmentally appropriate patient- and family-centered care. Adult health care providers. Physicians who care for adults may have had little training for many conditions that were once fatal in childhood and may have little experience working with young adults with disabilities or potentially disabling conditions and with their parents. Many will be subspecialists with a less comprehensive, less interdisciplinary approach to care than is characteristic of providers in pediatric or family practice. Health care financing issues loom large in discussions of barriers to successful health care transitions and, more generally, to effective implementation of the medical home and chronic care models. One set of financial barriers involves coverage, in particular, the potential for young people (1) to lose coverage altogether when they turn 18 or (2) to experience a disruption in their source care and covered services during a switch from one health plan to another or from Medicaid coverage for children to Medicaid coverage for adults. As noted earlier, the relatively high rates of uninsurance for young adults with disabilities compared with rates for children with disabilities create access problems that can undermine the transition to appropriate health care as an adult. In addition, the avoidable interruptions in children’s enrollment in public insurance programs, as discussed in Chapter 8, can disrupt health care coordination generally and transition planning specifically. A recommendation in Chapter 8 calls for the states to limit recertification for and reenrollment in SCHIP to no more than once a year. A second set of financial issues involves provider payment methods. These issues are often intertwined with coverage issues. Several studies have described shortfalls in the financing of health care for children with special needs and noted that payment for care coordination is typically limited with respect to both payment levels and the coverage of nonmedical services or services provided by nonmedical personnel (see, e.g., Fox and Newacheck [1990], Fox et al. [2002], and Markus et al. [2004]). Although it is not specific to young adults or health care transitions, a recent literature review by Jeffrey and Newacheck (2006) found strong evidence that health insurance coverage had positive effects on access to care for children with special health care needs and on their use of services. The studies reviewed did not assess the effects of coverage on health outcomes.

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The Future of Disability in America Pediatricians and internists, among others, have long argued that coordination-of-care activities and other nonprocedural services are poorly reimbursed compared with the payments provided for services that involve surgical, imaging, or other procedures.13 The website for the AAP medical home initiative devotes one section to the provision of advice on coding and reimbursement to help pediatricians secure the maximum appropriate payment for their services and time (AAP, 2006; see also the work of McManus et al. [2003] and Sophocles [2003]). For example, the AAP website recently provided advice about revisions in the Current Procedural Terminology coding scheme for physician services. The revisions added a code for 15 to 30 minutes per month of care plan oversight for patients who are not enrolled in home health or hospice and who are not in a nursing facility. Given the extensive demands that care coordination makes on physician time and the time of nursing, office, and other personnel, as well as the documentation required for meticulous coding of services, some pediatric practices limit the number of children with special health care needs or disabilities that they will accept as patients (see, e.g., Mitchell et al. [2001] and Valet et al. [2004]).14 Another concern for pediatricians is that if they choose to participate in Medicaid managed care contracts, they may be required to accept full-risk capitated payment (i.e., payment per managed care member rather than payment per service provided). Despite progress in developing health-based risk adjustment methods that more fairly compensate health plans that care for patients with serious chronic conditions or disabilities (see Chapter 8 and Appendix C), limited information and analyses are available for use in developing reliable and equitable risk adjustments for capitated payments for the care of children or young adults with special health care needs (White, 2002). Notwithstanding the risks of capitated payment for health plans or in- 13 Medicaid reimbursements are a particular point of contention, as is the application to pediatric practice of payment models (e.g., resource-based relative value scale) that were originally developed for Medicare (AAP, 1997, 1999a, 2004; see also GAO [2001a]). Nonetheless, a 2003 study reported that pediatricians’ caseload of Medicaid patients increased significantly between 1993 and 2000 (Tang et al., 2003). The study did not focus on children with special health care needs. 14 Recognizing the limits on financing of coordinated care for children with special health care needs, researchers examined the extent and costs of care coordination activities in one four-physician pediatric practice organized around the medical home model (Antonelli and Antonelli, 2004). Considering only nonbillable encounters, they found that about half of the encounters involved activities that are not typically considered medical, for example, managed care referrals and consultations involving educational programs. Physicians were involved in about half of the coordination activities. Using Bureau of Labor Statistics (BLS) data, the researchers estimated the annualized cost of the unreimbursed coordination activities for the practice to be $28,500 (setting staff labor costs at the BLS median). They did not discuss this figure in the context of overall practice expenses or revenues.

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The Future of Disability in America dividual providers and concerns about restrictions on patients’ timely access to needed services and providers, capitated payment theoretically allows more flexibility in how professionals manage care, including how they delegate services to nonphysicians. It also offers the potential for providers to benefit from the savings achieved through more effective care management. One recent examination of alternatives to the full-fledged model of chronic care endorsed by the ACP and others concluded that it is more difficult to support the management of patients with complex chronic conditions in a fee-for-service setting than in a capitated setting (Berenson, 2006). As noted earlier in this chapter, federal policy makers have been promoting Medicare special needs plans for beneficiaries who live in institutional settings, who are dually eligible for Medicare and Medicaid, or who have severe or disabling chronic conditions. In addition, the U.S. Congress has increased payments for capitated Medicare Advantage plans (not just plans participating in the special needs program and not just traditional managed care plans), such that payments to health care plans are projected to be higher than historic costs, particularly for dually eligible beneficiaries who are relatively healthy (Peters, 2005; Gorman Health Group, 2006). (See the work of Peters [2005] for a discussion of the complexities associated with various initiatives to coordinate and integrate care for Medicare and Medicaid beneficiaries with significant chronic care needs.) As described earlier, Title V of the Social Security Act provides for a program of state block grants for services to aid mothers, infants, and children and also supports programs for children with special health care needs or disabilities. Although they make needed services available to people who might otherwise go without them, the range of specialized Title V programs creates transition challenges in at least two dimensions. One dimension relates to the complexities of collecting the required information and planning and coordinating the appropriate transfers of care for a particular young person or for the group of young people served by a pediatric practitioner. The other dimension is financing. Multiple eligibility criteria may need to be tracked, and eligibility for some services may end when a young person “ages out” of the program (Szilaygi et al., 2003). As transfers of care occur for young people, the tracking and tapping of financing sources for care coordination and other transition activities can be a major challenge, particularly for the nonmedical dimensions of care and for young adults who are eligible for benefits from multiple sources (e.g., Medicaid, Medicare, and providers of vocational rehabilitation and assistive technologies). A 2000 review of state care coordination programs under Title V of the Social Security Act reported that although 41 (of 46 responding) programs assisted families with obtaining early intervention services and specialty medical services, only 33 offered assistance with transition planning (Zimmerman et al., 2000). That study also reported that only 18 state programs sought reimbursement for care coordination services through their

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The Future of Disability in America state’s Medicaid program (e.g., under EPSDT case management benefits, among other options). Nine of the 30 states that provided services to children enrolled in SCHIP obtained reimbursement through that program. Research on Health Care Transition Planning Notwithstanding the attention focused on health care transitions by the 1989 U.S. Surgeon General’s conference and various initiatives to promote organized transitions programs, research on the health care transition experiences of young people is limited (see, e.g., McDonagh [2000, 2006] and Bennett et al. [2005]). As a Canadian group put it, “[t]ransition is discussed frequently … but studied rarely” (Reid et al., 2004, p. 198). The investigators involved in one 1993 study reported that most young people with chronic conditions made the transition to adult life without serious problems, although those individuals with more complex conditions were more likely to experience difficulties (Gortmaker et al., 1993). A more recent and much larger study that used data from the 2001 national survey of parents of children with special health care needs reported low rates of discussion with a child’s physician about transition issues, including the identification of adult health care providers (Scal and Ireland, 2005; see also the work of Lotstein et al. [2005]). Positive responses in all the areas covered in the survey were reported for only 16 percent of the children; those children were more likely to have more extensive health care needs. These two studies found that the type of insurance was not significantly associated with the adequacy of transition planning (Scal and Ireland, 2005; see also Lotstein et al. [2005]). Using attendance at a congenital heart disease center as a measure of successful transfer, a Canadian study of young people ages 18 to 21 who had been treated as children at a children’s hospital found that not quite half had successfully transferred (Reid et al., 2004). Successful transfer was more likely for young people who were older at the time of their last children’s hospital appointment, who had undergone more surgeries, and who had a recommendation for follow-up documented in their medical chart. In an extensive review of the literature on transitions, McDonagh (2006) reported that studies of formal transition activities generally showed positive results. In studies of populations with cystic fibrosis or human immunodeficiency virus infection, one strategy that both young people and their parents viewed as successful was interaction with the designated adult care clinician during the transition period (Westwood et al., 1999; Miles, 2004). During such interactions, the patient and family can gain confidence in that clinician’s knowledge and capabilities. A study of young people with rheumatologic conditions (Shaw et al., 2005) and two studies involving young people with diabetes (Salmi et al., 1986; Vanelli et al., 2004) also found positive results by use of this transition strategy.

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The Future of Disability in America Most of the studies reviewed by McDonagh focused on process, satisfaction, and knowledge measures, but some of the studies reported improved health outcomes related to organized transition processes. Most studies involved small populations, often at a single center. Some focused on a single aspect of transition, for example, the role of a care coordinator. Few of the studies monitored the children over time. DIRECTIONS FOR RESEARCH Although the committee’s review identified useful research, many unanswered questions exist about the transition of young people with disabilities to adult health care and the circumstances that support successful transitions. The committee did not attempt to rank priorities for a program of research but identified several broad areas for further investigation (Box 4-6). It encourages researchers and research agencies to involve young people and their families, advocacy and support groups, pediatric and adult health care providers, and representatives of educational and social service agencies and health plans in planning a program of further research. The development of such a program of research should be part of the expanded support for disability and rehabilitation research called for in Chapter 10. EDUCATION OF PEDIATRICIANS AND ADULT CARE PHYSICIANS Despite the growth in the numbers of young people with chronic conditions and disabilities, professional education to prepare pediatricians and adult care physicians to guide the health care transitions for their young patients with serious chronic conditions and disabilities appears to be minimal or less in medical school and residency training (Reiss and Gibson, 2006). This lack reflects a broader problem with the preparation of health care professionals to care for people with chronic conditions and disabilities across the life span, as discussed also in Chapter 5 (Holman, 2004). Well-functioning health care systems can create an environment that supports good care for people with disabilities, but such care still requires appropriately educated physicians. Survey data suggest that today’s physicians may be poorly prepared to meet the complex medical and psychosocial needs of people with disabilities. For example, a national survey of physicians (n = 1,236) reported that nearly two-thirds regarded their training as inadequate in 10 chronic care skill areas: geriatric syndromes, chronic pain, nutrition, developmental milestones, end-of-life care, psychosocial issues, patient education, assessment of caregiver needs, coordination of services, and interdisciplinary teamwork (Darer et al., 2004). Another study of 70 clerkship directors for 16 medical schools reported that the directors varied considerably in

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The Future of Disability in America BOX 4-6 Directions for Research on Health Care Transitions for Young People Child Development and Personal Factors What are critical periods in child development that affect the transition process? Does planning for transition from the onset of a disability make a difference? How do stages in adolescent development, including risk-taking behaviors in earlier adolescence and maturation in later adolescence, affect the characteristics of transition planning and implementation? How may a young person’s physical and mental condition interact with development to affect the transition? What are developmentally appropriate ways and times for increasing an adolescent’s self-care and self-management responsibilities and involving adolescents with disabilities in decision making? To what extent should the process vary depending on the characteristics of the child? Family Factors What family characteristics influence transition and in what ways? How should transition programs account for and respond to these characteristics? What education and other types of support are most effective in helping parents prepare for their child’s transition to adult health care? Health Care Services Organization and Financing What are the most critical components of a model of health care transition for young people with disabilities? What does each component contribute to the effectiveness of transition care? For example, what characteristics of electronic health records and record systems best support the gathering and timely sharing of relevant medical, social, and other information among the parties involved in transition planning (e.g., young people, family members, the referring and the accepting physicians, and other health care providers). How does the effectiveness of different aspects of the model vary depending on the characteristics of the young person, the family, and their environment? How can transition care best be planned and implemented when the features of the medical home and chronic care models are not in place? What roles do assistive technologies, including those for cognitive disabilities, play in easing the transition? What specific changes in coverage of services, payment to providers, or other characteristics of health care financing would be most useful in improving the transition of care for young people with disabilities? Does training in teamwork in planning and coordinating the transitions for young people with disabilities improve the process and outcomes?

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The Future of Disability in America the importance that they assigned to an array of skills or competencies in chronic care management (Pham et al., 2004). Such skills or competencies are also relevant to care for many people with disabilities. Of concern to the committee is the relatively low ratings assigned to the need for physicians to know strategies to maximize their patients’ potentials, to be able to discuss alternative information sources, and to have the ability to assess equipment needs, which may involve identifying the need for a referral to an expert in this area. In addition to shortfalls in education on the care of chronic illnesses generally, another concern is an inconsistency between recognition of the importance of transition planning by providers and their personal involvement with the transitioning of their own patients. For example, Telfair and colleagues (2004) reported that although the majority of providers agreed on the importance of a formal transition program for young people with sickle cell disease, few actually facilitated the transition process with their patients. A survey of parents and physicians found differences of opinions about the extent to which they believed that it was the provider’s responsibility to assist in various transition activities and the extent to which providers actually did provide such assistance (Geenen et al., 2003). An encouraging sign of increasing attention to the requisites of chronic care management is the recent identification by the Accreditation Council on Graduate Medical Education (ACGME) of the need to make competency in systems-based care a priority in residency program curricula (ACGME, 2006a). As described earlier, systems-based care is a key element of the chronic care model. The ACGME discussion stresses the importance of working with other health care professionals, helping patients negotiate the health care system, and understanding coding and other dimensions of health plan operations. Other competencies involve medical knowledge, patient care, interpersonal and communication skills, professionalism, and practice-based learning and improvement. All of these competencies are relevant to physicians caring for young people with disabilities, either as aspects of direct patient care or in managing interactions with health plans so that payment and other procedures are followed to minimize coverage denials and other problems. In another initiative, the Institute for Improving Medical Education of the Association of American Medical Colleges has created the Enhancing Education for Chronic Illness Care initiative (AAMC, 2006). The institute has awarded grants to 10 medical schools to redesign their curricula and residency programs to improve graduates’ understanding and knowledge

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The Future of Disability in America of treatments for chronic conditions.15 Although it cannot be expected to cover the many specific dimensions of health care for young people with mobility, speech, cognitive, and other types of impairments, many aspects of general training in chronic care management will be relevant for the care of children with disabilities related to chronic health conditions. With respect to pediatric professionals specifically, pediatric residency programs require only a month of adolescent medicine experience (ACGME, 2006b). In addition, adolescents are underrepresented in continuity-of-care clinics, constituting less than 10 percent of clinic patients identified in a 1995 survey (Marilyn Dumont-Driscoll, professor of pediatrics, University of Florida College of Medicine, personal communication, December 11, 2006). Continuity-of-care clinics offer pediatric residents experience in providing longitudinal and continuous care for well children and children with chronic conditions or disabilities. The committee found no data on formal education for pediatricians about the transition to adult care for young people with disabilities. RECOMMENDATIONS The transition to adult health care is a complex process that is influenced by the characteristics of the young person, his or her family, and the larger environment of policies and organizational arrangements that affect the availability and coordination of health care services, the sharing of health care information, and the support provided by schools and social services available in the community. As outlined in this chapter, many barriers to successful health care transitions for young people with disabilities are basic features of health care in this country. These include the fragmented organization of health care services, dysfunctional provider reimbursement methods, the high levels of uninsurance or incomplete insurance (e.g., a lack of coverage for nonmedical consultations and services), and the limited availability of sophisticated information technology to support information sharing among generalists and specialists who care for children with complex health conditions. The limited education of health care professionals in chronic care management is another barrier. In addition, most physicians who treat adults have little exposure to pediatric medicine and thus to the conditions and patterns of care that their young adult patients with disabilities have experienced. 15 Other initiatives can also be cited. For example, more than a decade ago, the U.S. Department of Veterans Affairs began a 3-year realignment of its graduate medical education program by reducing specialty training positions and increasing primary care positions (Stevens et al., 2001). The shift came in response to a restructuring of patient care to improve services for the system’s large population of seriously and chronically ill veterans.

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The Future of Disability in America The committee was impressed by the potential and promise found in the medical home and chronic care models. If these models were widely adopted and sustained, young people would be much more likely to receive the comprehensive and multifaceted care that would help them to make a successful transition from pediatric to adult health care. Although further development of these models is needed, as is more research on the circumstances that contribute to their effectiveness, several elements appear to be critical if health care consistent with that offered through these models is to expand and reach more young people. These elements include reforms in the organization and financing of health care and better preparation of health care professionals for the provision of coordinated care for people with serious chronic conditions and disabilities. Recommendation 4.1: To improve the transition of young people with disabilities from pediatric to adult health care, policy makers, professional societies, public and private payers, and educators should work to align and strengthen incentives in public and private health care programs to support coordinated care and transition planning; expand the use of integrated electronic medical records for chronic disease management and during the transition of young people with disabilities from pediatric to adult health care; and expand chronic care education in pediatric and internal medicine residency programs and add skills in the management of individuals with chronic health care needs to specialty board requirements. This chapter makes clear that young people face major changes in their eligibility for public or private health coverage and are at risk for the loss of benefits just as they are in the process of making the transition from pediatric to adult health care. As described earlier, Medicaid, SCHIP, IDEA, and SSI all change eligibility or coverage policies at age 18 or by the time a young person reaches age 21. MCHB, despite its emphasis on planning for transition, has neither the jurisdiction nor the resources to support transition programs for individuals beyond age 21. Thus the committee recommends several changes in public programs to support young people with making a successful transition to adult health care services and independent living. Recommendation 4.2: To support the successful transition of young people with disabilities from pediatric to adult health care and independent living, the U.S. Congress should extend Medicaid and State Children’s Health Insurance Program (SCHIP) coverage through age 21 for young people with disabilities

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The Future of Disability in America and specify that Medicaid and SCHIP benefits cover transition assessment, coordination, and management services for these young people; fund the Maternal and Child Health Bureau so that it may expand its work to develop and implement medical home and other services for young people with special health care needs who are over age 21 and who need continued transition support; revise the Ticket to Work program by lowering the eligibility age to 16 years and directing the U.S. Department of Education and the Social Security Administration to develop guidance for the coordination of Ticket to Work services with the transition services and supports provided under the Individuals with Disabilities Education Act; and direct the Centers for Disease Control and Prevention to work with other relevant agencies to examine opportunities for the monitoring of transitions through additions to state and national youth surveys or other cross-sectional and longitudinal data collection efforts. In addition, as discussed in Chapter 9, it important that policy makers monitor the effects of changes in Medicaid program requirements that were made in the Deficit Reduction Act of 2005. Some of these changes may threaten the provision of services to children with special needs. It will also be important to monitor the implementation of the act’s provisions for states to expand enrollment of low-income children and youth with disabilities. Although not a formal recommendation, the committee encourages the Centers for Disease Control and Prevention, in conjunction with the Social Security Administration, the Maternal and Child Health Bureau, the Centers for Medicare and Medicaid Services, and the Department of Education to convene a conference on transition planning for young people with disabilities. The topics for such a conference could include discussions of best practices in transition services, transition monitoring, continued research to strengthen the evidence base for transition planning, health professions education, and issues in coordinating the transition services provided by different public programs. This chapter has focused on young people with disabilities who are in the process of moving into the world of adult health care and adult life generally. The next chapter focuses on the continuing experiences of people with early-onset disability as they grow older. It also considers the risk of secondary health conditions for people with disabilities—regardless of age.