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 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.

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 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.

BOX 4-1

Characteristics of Child and Adolescent Health That May Affect the Complexity of Health Care Transitions.

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 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 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).

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 the State Children’s Health Insurance Program [SCHIP], the figures are 3 and 2 percent, respectively.)

The rules for the federal-state Medicaid program are complex and difficult to summarize. Children may qualify for Medicaid in different ways. Depending on the category under which they qualify, their school status, and, in some cases, state discretion, Medicaid may cover children through age 17, 18, 19, or 20 (CMS, 2005d). After that, young people must meet the criteria for coverage applied to adults. For children with disabilities who would qualify for SSI benefits except that their family income is too high, the Family Opportunity Act (passed and signed as part of the Deficit Reduction Act of 2005) allows states to create a “buy-in” option that provides access to Medicaid for families with incomes up to 300 percent of the federal poverty level (Kaiser Commission, 2006a). (States are permitted to charge premiums based on family income.)

Children who are covered by Medicaid by virtue of receiving SSI benefits may lose both SSI benefits and Medicaid coverage at age 18 if they do not meet the SSI eligibility criteria for adults. These and other age-related aspects of both public and private insurance complicate health care transition planning and implementation.

As described in more detail in Chapters 8 and 9, federal regulations require that Medicaid programs must cover Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) services for children.⁴ Transition planning is not specifically cited as an EPSDT-covered service, and, in any case, implementation of EPSDT requirements has been uneven across the states (see, e.g., Foltz [1982], Sardell and Johnson [1998], Rosenbaum et al. [2005], and Peters [2006]). Nonetheless, the EPSDT benefit should, in theory, cover various assessments and services in preparation for the transition of a young person with disabilities to adult health care services. In addition, the basic Medicaid benefit package covers a number of long-term care services, including specialized therapies and some home care services that are often not available through private plans but that can ease the transition to adult health care for some young people with disabilities.

The federal rules for SCHIP do not require states to include EPSDT benefits, but SCHIP is still an important resource for children with special needs who would otherwise be uninsured. As recommended at the end of this chapter, extending Medicaid and SCHIP benefits through age 21 for all young people with disabilities would help them through a vulnerable period as they transition to adult life.

A variety of other health-related public programs may help children with disabilities obtain services and prepare for the transition to adult health care. For example, Title V of the Social Security Act authorizes MCHB to administer a major program of state block grants that offer support services for mothers, infants, and children and a series of specialized national programs, many of them related to children with special health care needs or disabilities. By law, 30 percent of funds for these grants are reserved for “family-centered, community-based programs for children with special health needs,” although the states may spend more (Peters, 2005, p. 16; see also Gitler [1998]).

One review of Title V programs for children with special needs noted that they “have traditionally focused on short-term goals and medical needs and have not focused on long-term issues such as transfer to adult care systems, employment, and independent living” (HRTW National Resource Center, undated, unpaged). In recent years, however, MCHB and state programs have expanded their focus beyond specialty services and have directed more attention to transition and longer-term issues, as evidenced by the transition goal and programs cited earlier.

Transition Support and Public Schools

For children who are eligible, federal education policy requires, at least in principle, the provision of extensive support for transition planning and implementation in several, mostly nonmedical aspects of a young person’s life and environment, including independent living arrangements, work, and postsecondary education. Problems in these nonmedical areas of life can have negative consequences for health and health care transitions.

The transition support requirements were included in 1990 amendments to the Individuals with Disabilities Education Act (IDEA), which requires free appropriate public education for children with disabilities who need special education and related services.⁵ The requirements apply until an eligible young person completes school or, in most cases, reaches age 22. In 2002, IDEA covered approximately 1.8 million young people in the 14- to-17-year-old age group, 200,000 18-year-olds, and 87,000 people in the 19- to-21-year-old age group (U.S Department of Education, 2006c, Table 1.7). The U.S. Department of Education funds the National Center on Secondary Education and Transitions to provide technical assistance and information on transition planning and resources for young people with disabilities.

Since 1990, further amendments to IDEA have changed some transition planning requirements. Currently, a student’s individual education plan must include a description of the transition services that he or she requires (Apling and Jones, 2005). These services are now defined as a coordinated set of activities that is designed to be “results oriented” and “focused on improving the academic and functional achievement of the child with a disability to facilitate the child’s movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation” (21 U.S.C. 1401). The 2004 amendments to IDEA changed the required start date for transition planning to age 16, which many view as too late (Cortiella, 2005; SSAB, 2006). Other provisions specified that every state is to develop a transition monitoring and improvement plan (U.S. Department of Education, 2006a).

Although health care transitions are not an explicit focus of IDEA, when a young person has a health condition that interferes with his or her academic achievement, the transition plan may directly address that problem and the services needed to address that problem. Some attention to health-related issues is implicit in aspects of transition planning, for example, guidance or education related to risk taking and safety skills (see, e.g., Blessing [2003] and Wood et al. [2004]). Although contacts with health care organizations are generally not tracked, the U.S. Department of Education does report on contacts with mental health agencies. For an estimated 11 percent of covered students in 2002, schools contacted mental health agencies as part of the transition planning process (U.S. Department of Education, 2006c, Figure 1-48).

An evaluation of IDEA and its transition planning requirements was beyond the scope of this study, but the committee did find reason for concern that the program was not living up to expectations. In 2000, a report from the National Council on Disability based on data from the U.S. Department of Education concluded that nearly 45 percent of states were not in compliance with requirements for individualized education plans and that nearly 90 percent were not in compliance with transition planning requirements (NCD, 2000a). In 2002, the U.S. Commission on Civil Rights noted a lack of full federal funding for IDEA and inadequate resources for program monitoring (USCCR, 2002).

In a 2005 interim report from a 10-year longitudinal study funded by the U.S. Department of Education, researchers described the transition experiences and other circumstances of a national sample of young people ages 15 to 19 who were out of school in 2003 and who had also been the subject of interviews in 2001, when they were still receiving special education services (Wagner et al., 2005). (The researchers also questioned their parents and teachers.) The study, which began in 2000 and which will continue until 2009, includes 12,000 young people who were 13 through 16 years of age when the study began. Researchers reported that the average age at which transition planning began was 14.7 years (at the time, the legal requirement was that it was to begin at age 14) and that 95 percent of young people had a transition plan. The researchers reported that, overall, about 83 percent of teachers described the transition planning program as being well suited or fairly well suited to preparing youth for transition, although only 73 percent of the youth received instruction that focused specifically on transition planning.

Box 4-2 lists several of the study’s initial findings about the postschool experiences of the young people with disabilities evaluated in the study. The researchers emphasized the great diversity among the young people, noting that “some youth are struggling because of their disability, poverty, the absence of a high school education, or other factors” (Wagner et al., 2005, p. ES10). They also reported that, compared with the other young people studied, young people with emotional disabilities, mental retardation, or multiple disabilities experienced more limitations related to work, postsecondary education, and other factors related to community participation. The researchers urged caution at this early point in the study in describing the outcomes as successes or failures,

BOX 4-2

Selected Survey Findings About the Postschool Experiences of Young People with Disabilities. Overall, 72 percent completed high school, including over 85 percent of those with hearing, vision, or orthopedic impairments or autism. School completion rates (more...)

Income Support and Work

In 2005, approximately 1 million children qualified for SSI because they met the law’s definition of disability for children and their and (usually) their family’s incomes and resources fell within the eligibility limits (SSA, 2006a). For about two-thirds of these children, the disability involved a mental disorder, including mental retardation. When children receiving SSI benefits reach age 18, their medical condition is reviewed by using the disability rules for adults to determine their continued eligibility. At that point, their family’s income and resources no longer count for financial eligibility determinations. Some young people lose benefits on the basis of the application of adult disability criteria, but others become eligible for SSI because their family’s resources are no longer considered in their eligibility determination.⁶

To support independence and community participation, the U.S. Congress and the Social Security Administration have developed various dem onstration and other programs to help adult SSDI and SSI recipients begin or return to work by providing vocational and other assistance, including a continuation of Medicare or Medicaid benefits. In addition, one program, Ticket to Work, has a component for young people ages 18 to 21 that is intended “to ensure the successful transition of youth with disabilities from school to work and adulthood through the provision of employability services, supports, and incentives” (SSA, 2006bnpaged; see also U.S. Department of Labor [2004b]). This program does not extend to young people under age 18 who receive SSI benefits, although these young people may be eligible for vocational and other transition services through IDEA. In a report to Congress, the federal Ticket to Work and Work Incentives Panel (SSA, 2003b) recommended that 16- and 17-year-olds be allowed to participate in the Ticket to Work program, and the committee reinforces this recommendation at the end of this chapter.

A recent report on the reform of Social Security disability programs also recommended several changes related to children (SSAB, 2006). Among other directions, it proposed an integrated system for children with disabilities that would include (1) comprehensive, functional assessments early in childhood; (2) expectations of independence, self-support, and participation; and (3) continuing guidance and management to plan for these goals and secure the supports necessary to achieve them. It did not describe how this integrated system would be financed, for example, what local school districts would be expected to fund. With respect to reform directions overall, the report acknowledged that “no substantial body of evidence-based research” provides clear direction about what programs to encourage work are effective and with what populations (SSAB, 2006, p. 8).

Other Environmental Factors

For young people, the nature of health care transitions and transition outcomes—including their participation in community life—may be influenced by many environmental factors in addition to those cited above. For example, among the environmental domains identified in the ICF (listed earlier in Box 2-2), support and relationships involving family and friends can affect how well prepared young people are to manage health care and other transitions and how much assistance is available to help them when problems arise. Attitudes, including cultural biases and anxieties, may lead primary care professionals to avoid accepting adults with disabilities as patients. Assistive products and accessible home technologies can help young people with disabilities achieve and sustain independent living. Accessible built environments can affect the ease with which young people are able to find a combination of physically manageable (and affordable) housing, transportation, and employment arrangements that allows them to live independently.

In most of the domains just cited, services, systems, and policies beyond those discussed in this chapter can impose or remove barriers to young people’s transition to an adult life of independence and community participation. For instance, a wide range of social service and advocacy programs and organizations—both public and private—seek to help people with disabilities achieve fulfilling lives and manage or overcome the physical, cultural, economic, and other environmental barriers that they encounter. Examples of such programs include the state Assistive Technology Programs, other technology-access programs described in Chapter 7 and 9, and the Centers for Independent Living.⁷ Such organizations may fill gaps in public services, provide alternative styles or types of services, assist people in dealing with bureaucratic and legal obstacles to obtaining needed services, provide information about options that public officials may not mention without explicit inquiries, and engage in more general advocacy for people with disabilities. Even when such organizations do not exist in a given community, many groups have websites that offer extensive information and advice, for example, about how to qualify for and then manage consumer-directed personal care services.

The next section considers health services and system factors that may affect the transition from pediatric to adult health care. It also discusses the “disability competence” of health plans more generally.

Organization of Pediatric and Adult Care for Individuals with Chronic Health Conditions or Disabilities

A comprehensive review of the diverse and complicated organization of health care children, adolescents, and adults with chronic health conditions or disabilities is beyond the scope of this report. As briefly described below, however, desirable models of such care have been identified for both children and adults. To the extent that the features of these models become more widely adopted, young people should experience better planning for health care transitions.

Adult Care Models

Proponents of the medical home model for children with special health care needs are increasingly linking it to a model for chronic care management that has focused primarily on adults (see, e.g., NICHQ [2005]).¹¹ At the same time, the medical home is increasingly being invoked in discussions of the chronic care model. For example, in a position statement endorsing the chronic care model, the American College of Physicians (ACP) noted its support for “a patient-centered, physician-guided model of chronic care management that gives the patient a ‘medical home’ from which all care needs are coordinated” (ACP, 2004, p. 2). In 2006, the ACP endorsed the “advanced” medical home as the basic model for all primary care (ACP, 2006).

The chronic care model is widely cited and endorsed (see, e.g., IOM [2003b], Eichner and Blumenthal [2003], and ACP [2004]). Although both models emphasize the importance of coordinated care and active patient involvement, the pediatric medical home model is more explicit in defining the roles of the parent and the child in education and participation in decision making. Most descriptions of the chronic care model are more explicit in emphasizing the crucial roles of system-level elements. These elements include overall delivery system design, evidence-based decision making, clinical decision support systems, and clinical information systems that can track the performance of the care team and provide feedback.

Palsbo and Kailes (2006) recently analyzed the chronic care model to identify features that would make applications of the model “disability competent” (see also the work of DeJong et al. [2002]). Although these features do not take the specific needs of young people into account, they are broadly relevant to this group (Box 4-3).

BOX 4-3

Features of Disability-Competent Chronic Care Systems. “Gate-opener” mechanisms, for example, standard protocols for specific health situations that allow the bypassing of “gatekeeper” procedures that control specialty (more...)

As discussed in Chapter 8, 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 (Section 231 of the Medicare Modernization Act of 2003). The great majority of the existing plans (226 of 276 as of 2006) serve dually eligible individuals; only 13 focus on individuals with severe or disabling chronic conditions (Verdier and Au, 2006). Most plans have contracts only with Medicare. Although these plans have not been aimed at young people in transition, experience with them may contribute to the dissemination of the chronic care model to this younger group.

If the pediatric medical home and chronic care models were in place, transitions from pediatric to adult health care would undoubtedly become easier and more predictable for young people with disabilities. Such ease and predictability are not at hand, however. The widespread implementation of both the chronic care model and the medical home model depends on extensive changes in the organization, delivery, and financing of health care in the United States; but such changes have been slow to materialize (see, e.g., Berenson [2006]). For example, despite the heavy promotion of electronic medical records, their implementation in physicians’ offices has proved slow (see, e.g., Jha et al. [2006]). Evidence-based guidelines are becoming more available, but acceptance of the guidelines is uneven and decision support tools to promote adherence are not in widespread use (see, e.g., Cabana et al. [1999], Solberg et al. [2000], and Shekelle et al. [2003]). Financing barriers to transition planning and implementation are discussed further below.

Approaches to Health Care Transitions for Young People

This period of late adolescence and young adulthood too often is at risk of becoming a twilight zone with young people falling out of [pediatrics] but not yet falling into adult medicine.

McDonagh (2006, p. 4)

Most discussions of health care transitions for young people reflect the perspectives of pediatric and adolescent medicine, with relatively little contribution from adult-oriented medicine (but see the work of Barbero [1982] and Schidlow and Fiel [1990]). In 2002, however, the AAP, the ACP, and the American Academy of Family Physicians collaborated on a statement on health care transitions for young adults (AAP et al., 2002).¹² In 2003 the Medicine-Pediatrics Program Directors Association created a Committee on Transition Care (Melgar et al., 2005). Today, about 15 percent of pediatrics graduates come from combined medicine-pediatrics residencies.

A good model of transition for young people with disabilities would combine the features emphasized in the medical home and chronic care models with the disability-competent features described above in Box 4-3. Even then, the specific approaches to transition and the transfer of care will vary depending on the complexity of the person’s health condition; the availability of relevant medical and other services in the community; and other individual, family, and environmental factors, as described earlier.

Several options exist for transferring responsibilities for a young person’s health care. For example, the transfer might be from a general pediatrician to an adult internist or family practitioner, from a pediatric subspecialist to an adult subspecialist, from a pediatric subspecialist to an internist or family practitioner with specialized experience, or from a pediatric medical home to a coordinated adult chronic care team. Today, the fourth option—with a coordinated team on both sides of a planned transition—is uncommon. In addition, although many young people with disabilities will experience a transfer of health care from a pediatrician (or adolescent medicine specialist) to an adult care physician, some who have been under the care of a family practitioner may continue with that individual as their primary care physician.

A survey of 126 interdisciplinary adolescent transition programs reported that a primary care transition approach was uncommon (Scal et al., 1999). (These programs were developed before the intense promotion of the medical home model of care.) The majority of programs (62 percent) were organized around a specific condition, such as cystic fibrosis; the rest provided services for a range of conditions. Nonetheless, the actual services provided differed little among the different approaches. Program respondents cited multiple difficulties in achieving successful transitions, including a lack of institutional support, a lack of time, and inadequate education in the areas of behavioral change and sexuality and reproduction. Several reports have called for transition service education for physicians but have not proposed specific educational strategies (Leslie et al., 2000).

An analysis commissioned by the National Health Service in the United Kingdom used four problem-oriented models of health care transition as a means of describing different arrangements (NCCSDO, 2002). The direct transition model involves a handoff from pediatric to adult health care providers that includes strong attention to communication and information sharing but minimal attention to developmental issues (e.g., maturity for self-care). The analysis suggests that this approach is best suited to young people with mild impairments and few personal, family, or environmental risk factors. The sequential transition model entails considerably more support (e.g., support from an adolescent transition clinic) for a young person whose circumstances are more complex and who still needs to develop the skills and maturity required to negotiate the health care system and to manage his or her own care independently. The developmental transition approach puts even more emphasis on psychosocial and other developmental issues and support for young people identified as medically or socially vulnerable. Finally, the professional transition model shifts the focus to the professional infrastructure needed to support health care transitions for young people with complex medical conditions, such as cystic fibrosis or advanced sickle cell disease. This might include a stepwise process of (1) physician visits that include some time with the parents present, (2) introductions to adult care physicians, (3) assessments of readiness for health care transfer, and (4) transfer to adult health care with continuing access to counseling and peer support groups.

Although physicians in organized health care systems will have more support and resources to manage the transitions outlined in the professional transition model, all physicians—regardless of the setting—will, ideally, have basic competencies and characteristics that reproduce certain elements of the chronic care model at the individual level of the clinician and the patient. These elements include

• a comprehensive approach to assessment and planning;
• a willingness to acquire expertise when needed to manage the individual’s health care and transition to adult health care;
• a readiness to work collaboratively;
• a patient-centered philosophy of care;
• good skills in communicating with patients, families, other health care professionals, and social service professionals, when necessary; and
• an ability to negotiate and resolve differences when professional and patient or family preferences differ.

The elements of a professional health care transition infrastructure have been examined in a number of articles that focused on particular health conditions, such as asthma (Couriel, 2003), sickle cell disease (Anie and Telfair, 2005), inflammatory bowel disease (NASPGHAN, 2002), dia betes (Kipps et al., 2002), and cystic fibrosis (Anderson et al., 2002). For example, in one study higher rates of clinic attendance were seen among adolescents with diabetes who had had the opportunity to meet the adult diabetes consultant before their transfer to adult health care (Kipps et al., 2002). Although some of these articles summarize the findings for only a small series of patients, who were often evaluated by the use of surveys, their common themes provide some opportunity to identify frequent characteristics of transition. This is relevant, because research on health care services for children’s chronic conditions suggests that what works is often not disease specific but, rather, is applicable across a broad range of conditions (Hobbs et al., 1985; Perrin et al., 1993).

Box 4-4 outlines the steps in transition planning that will be particularly important for a young person with a serious chronic condition or disability. Most of these steps involve the collaboration of the physician with the young person (to the extent that his or her condition permits) and the young person’s family beginning well before the time that a transfer in care is anticipated. They also involve considerable attention to detail so that important needs are not overlooked and the practical aspects of a successful transition are identified well in advance of the actual transfer of care. These practical aspects include the identification of every service that a young person is receiving, the determination of what transfer options are available for each service (including self-care), the assessment of the financial resources required to support the transfer, the evaluation of patient and family understanding of the care plan and their needs for education and counseling, and the evaluation of the psychosocial and practical as well as the medical aspects of the transition. The description in Box 4-4 assumes that the young person has been cared for by a pediatric specialist or generalist. For family practitioners who continue to care for a young person, some of these assessments may still be needed if a transition from pediatric to adult subspecialist care must be arranged and if the effects of changes in a young person’s living arrangements need to be considered.

BOX 4-4

Care Coordination and Transition Planning. The young person’s physician or care team begins working with the patient (as appropriate) and the patient’s family to discuss the process and timing for the shift to adult health care and the (more...)

The importance of the last element listed in Box 4-4—counseling and the preparation of young people for the health care transition—is illustrated by the findings of Hauser and Dorn (1999) about adolescents with sickle cell disease who were undergoing transitions in care. They found that about half of the small group of adolescents they studied (n = 22) did not know such basic information as their hemoglobin type or their insurance status or that their condition is hereditary.

Barriers to Successful Transition Planning and Outcomes

A 1999 analysis of barriers to care coordination for children with special health care needs is also relevant to the transition of young people to the adult health care system (AAP, 1999a). Box 4-5 expands upon that 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.

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 (more...)

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.
• 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.

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 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 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.

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.