National Academies Press: OpenBook

The Future of Disability in America (2007)

Chapter: 4 Health Care Transitions for Young People

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Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
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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-

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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-

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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).

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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.

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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).

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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).

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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).

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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

4

As discussed in Chapter 9, the Deficit Reduction of Act of 2005 made complex changes in federal Medicaid policies. EPSDT benefits are still required for children, but in some cases, the benefits could be structured as a wraparound to an otherwise less comprehensive benchmark benefit plan (Kaiser Commission, 2006a). By adding another complexity to EPDST coverage, this policy change could have unintended consequences. West Virginia is said to have recently approved an alternative Medicaid basic benefit plan that excludes the follow-up EPSDT diagnostic and treatment services that are prescribed on the basis of the findings of screening examinations (Peters, 2006).

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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

5

Other laws also apply to the education of children with disabilities, including the Rehabilitation Act of 1973 (as amended) and the Americans with Disabilities Act. Section 504 of the Rehabilitation Act states that “[n]o qualified handicapped individual shall, solely by reason of his handicap, be excluded from participation in, be denied benefits of, or otherwise be subjected to discrimination under any program or activity which receives or benefits from Federal financial assistance.”

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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,

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

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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 were 56 percent for young people with emotional disturbances, 65 percent for those with multiple disabilities, and 75 percent for those with learning disabilities.

  • Overall, 96 percent had no reported problems with self-care, 78 percent had high reported functional abilities scores, and 78 percent had medium or high reported social skills. Seventy-two percent had health described as excellent or very good.

  • Approximately 80 percent were attending school, working, or preparing to work.

  • Approximately 20 percent were attending postsecondary school, which is about half the rate for other young people. About half of this group said they did not consider themselves to have a disability.

  • Over 40 percent were employed, whereas the rate was over 60 percent for other young people. During the initial interviews, for all categories of disability except multiple disabilities, over 90 percent of parents expected that their children would definitely or probably work.

  • About 75 percent were living with their parents up to 2 years after leaving school, a rate similar to that for other young people.

SOURCE: Wagner et al. (2005).

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-

6

Beginning at age 18, young people with disabilities also may become eligible for SSDI benefits on the basis of a parent’s Social Security earnings record, even if they have no such earnings record of their own. Under one SSDI provision, the program may cover adult children who have a disability that began before they reached age 22. Under another provision, the program may cover adult children who received dependents’ benefits under their parent’s Social Security before age 18 if they are disabled at age 18 (based on disability determination criteria for adults) (SSA, 2007a). Young people who qualify for SSDI become eligible for Medicare after 24 months after they begin receiving benefits. (Chapter 9 recommends that this waiting period for Medicare coverage be phased out.)

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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, 2006b, unpaged; 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)

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
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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.

HEALTH CARE SERVICES AND SYSTEMS

Efforts to plan and manage health care transitions for children with chronic medical problems and disabilities are inevitably complicated by the diversity of this country’s health care delivery and financing arrangements. One feature of this diversity is persistent disparities in access to care among different populations. Moreover, even for young people with mild conditions, differences in pediatric and adult health care services can be a challenge—particularly as they relate to the expectations for primary care practice and routine preventive and health promotion services.

Survey data clearly show a shift in the health care experiences of young people as they enter adult life. For young people ages 12 to 17, in com-

7

As described by the U.S. Department of Education, which administers the Centers for Independent Living grant program under the Rehabilitation Act, these centers are “consumer-controlled, community-based, cross-disability, nonresidential, private nonprofit agencies that are designed and operated within a local community by individuals with disabilities and provide an array of independent living services” (U.S. Department of Education, 2006b, unpaged).

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

TABLE 4-1 Usual Sources of Health Care for Young People With and Without Activity Limitations, Ages 12 to 17 and 18 to 24, 2005

Source of Health Care

Percentage of Young People

Ages 12–17

Ages 18–24

With Limitation

Without Limitation

With Limitation

Without Limitation

Clinic or health center

19.6

18.6

18.0

16.3

Doctor’s office or HMO

71.5

72.1

57.8

47.7

Hospital emergency room

1.4

0.4

2.1

1.7

Hospital outpatient department

1.4

0.9

0.2

0.8

Other/unspecified

0.3

0.7

3.4

2.9

Totals for:

 

 

 

 

Those with a usual source of care

94.2

92.7

81.5

69.4

Those with no usual source of care

5.8

7.3

18.5

30.7

SOURCE: H. Stephen Kaye, Disability Statistics Center, University of California at San Francisco, unpublished tabulations from the National Health Interview Survey, as requested by the committee. The questions used to identify limitations that differ by age group are described in Chapter 3.

parison with young people ages 18 to 24, the transition to adulthood is accompanied by a reduction in the percentage of individuals with a usual source of care (Table 4-1).8 The drop is, however, larger for the group without disabilities. For both groups, most of the decline is accounted for by a drop in the use of a doctor’s office or a health maintenance organization (HMO) as the usual source of care. Additional data from the same survey show that young adults ages 18 to 24 are the least likely among all age groups to have a usual source of care.

Several factors undoubtedly contribute to the differences in the sources of health care by age and disability status. Young adults without disabilities, particularly males, often have no pressing need to see a physician. They typically will have “aged out” of their pediatrician’s practice and may not have thought to ask for a referral. Young adults also may lose insurance coverage because they are no longer covered by their parent’s health insurance or Medicaid and may have moved out of the family home and the sphere of family oversight.

In 2005, approximately 26 percent of young people with disabilities

8

The respondent for individuals under age 18 is usually a parent, whereas individuals age 18 and over usually report for themselves. The sample sizes for young people with specific kinds of limitations are too small to allow reliable subgroup estimates.

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

and 28 percent of other young people lacked insurance, a figure substantially higher than that for working-age adults overall (see Chapter 8). The combination of a lack of insurance and a lack of a usual source of health care can be significant for young people with disabilities. A recent analysis of 1999 to 2002 National Health Interview Survey data reported that 45 percent of young people ages 19 to 29 who had a disability and who were uninsured had no usual source of health care and two-thirds said that they had unmet health needs (Callahan and Cooper, 2006).

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.

Medical Home Model of Pediatric Care

For children with disabilities or special health care needs, efforts to improve the provision of health care have proceeded along many fronts. Some initiatives focus on advances in specialty medical care, whereas others focus on primary care, in particular, the development and implementation of the medical home model of care. The medical home model, which is endorsed and supported by the AAP, promotes health care that is accessible, family centered, continuous, comprehensive, coordinated, and compassionate (AAP, 2002; see also AAP [1999a, 2005a]).9 For MCHB, one of its six goals for children with special health care needs (which includes children with disabilities) is that all such children “receive coordinated, ongoing comprehensive care within a medical home” (McPherson et al., 2004, p. 1538).

The medical home is intended to provide ongoing primary care for children with special health care needs, help educate children and families about the child’s condition and its treatment, coordinate health services

9

With funding from MCHB and others, the AAP administers the National Center of Medical Home Initiatives for Children with Special Health Care Needs, which develops educational materials, training, guidelines, and other resources to help physicians, families, and others provide children with access to medical homes (AAP, 2005b). MCHB also helped fund two medical home “learning collaboratives” that had as one focus extending state Title V agency relationships with pediatric primary care under Title V of the Social Security Act (NICHQ, 2005).

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

(especially subspecialty, surgical, and specialized therapies) with the family, facilitate the integration of the child into community services, and address the child’s psychological and social needs. In addition, it should aid children and families through critical health care and community transitions, including the transition to adult life and adult health care services. As noted above, planning for health care transitions may involve attention to educational, developmental, psychosocial, and other service needs and the coordination of health care plans with educational and other community organizations as well as adult care providers.

A 2001 survey of families of children with special health care needs suggested that although most of these children had access to some features of the medical home model, the full model was not available for a significant proportion of them (Strickland et al., 2004).10 A North Carolina study reported that 56 percent of children with special health care needs had a medical home (Nageswaran et al., 2006). Surprisingly, the researchers found that children with some or severe functional limitations were less likely to have a medical home than children with no functional limitations. This is unfortunate, because early reports suggest that the medical home approach may particularly benefit children who have the most severe conditions (Broyles et al., 2000; Palfrey et al., 2004).

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).

10

The study assessed five components of the model: the child and family had a usual place to receive health care, a personal physician or nurse, no problems in obtaining appropriate referrals to specialists or other appropriate services, appropriate coordination of care, and family-centered care.

11

The model, which was developed by Edward Wagner with support from the Robert Wood Johnson Foundation, differs from disease management programs in several respects. The latter tend to be focused on single medical conditions, to involve little or no use of nonmedical services, and to rely more heavily on standardized care management protocols (see, e.g., ACP [2004] and MedPAC [2004]).

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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).

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.

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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 referrals and access to other expensive specialized services

  • Extended appointment times, for example, for individuals who use augmented communications tools or technologies or who need assistance in getting ready for an examination

  • Benefit management mechanisms that facilitate waivers of benefit restrictions when the provision of additional services would likely reduce a health plan’s overall costs for a person’s care

  • Care that considers the whole person and his or her environment, including needs for social services or home modifications

  • Specialized health education and behavior modification programs, for example, programs suitable for individuals with bipolar disorder

  • Accessible websites and other communications tools

  • Information systems that support the integration of clinical and social services as well as quality monitoring and improvement activities appropriate to this array of services

  • Providers with accessible facilities and equipment

  • Clinicians and other personnel who have the appropriate knowledge, skills, attitudes, and organizational support (e.g., communications training and access to specialized expertise) to serve people with disabilities, including expertise in assessing the needs and options for assistive technology, general-use technologies, and home modifications

SOURCE: Palsbo and Kailes (2006).

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]

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
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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).

12

The AAP has also issued statements on the physician’s role in the development and implementation of the individualized education plans that are required under IDEA and, more generally, the transition of young people with disabilities from school to work or college (AAP, 1999b, 2000). These statements stress that the physician role includes promoting self-advocacy and self-determination and providing anticipatory guidance to help prepare young people for health, health care, and other challenges or issues that may lie ahead.

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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-

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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.

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

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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 steps needed to prepare for that shift. The process should begin by age 14 for patients with more complex conditions.

  • In collaboration with the family and all providers involved in the young person’s care, the physician or care team prepares a detailed description of the patient’s diagnoses with supporting diagnostic data and a plan of care that documents all aspects of care, including hospital care, specialty care, home care (formal and informal), medications, medical devices, and other relevant information. It includes a roster of patient diagnoses with dates and status, therapeutic plans with medication management, and other interventions.

  • On the basis of the care plan and an assessment of the patient’s or family’s understanding of the child’s condition and needed care, the health care plan is amended to include steps to address known and anticipated gaps.

  • In light of the assessment described above, the physician or care team works with the patient and the patient’s family to assess the young person’s readiness for the transfer of care and evaluate the adequacy of his or her environmental supports, including health insurance, living arrangements, work arrangements or plans, and transportation needs.

  • The physician or care team works with the patient (as appropriate) and family to identify and contact adult care providers consistent with the care plan and to identify other appropriate resources (e.g., social service agencies, support groups).

  • The physician or care team develops a medical summary that provides a common information resource for adult health care providers and facilitates the transfer of relevant records and other information to adult health care providers with the patient’s written permission.

  • The patient and the patient’s family receive a notebook or file with documentation of the patient’s diagnoses, essential medical history, treatments, and self-care needs; questions for the patient’s new health care providers; and information about community resources and supports.

  • The physician or care team provides counseling and education about new roles and responsibilities of the patient for components of the health care plan. Anticipatory planning covers both disease-specific and developmental aspects of care and includes special attention to sexual development, family planning, and risk taking as part of the developmentally appropriate patient care plan.

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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.

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×
  • 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.

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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.

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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.

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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?

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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.

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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.

Suggested Citation:"4 Health Care Transitions for Young People." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
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The Future of Disability in America Get This Book
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The future of disability in America will depend on how well the U.S. prepares for and manages the demographic, fiscal, and technological developments that will unfold during the next two to three decades.

Building upon two prior studies from the Institute of Medicine (the 1991 Institute of Medicine's report Disability in America and the 1997 report Enabling America), The Future of Disability in America examines both progress and concerns about continuing barriers that limit the independence, productivity, and participation in community life of people with disabilities. This book offers a comprehensive look at a wide range of issues, including the prevalence of disability across the lifespan; disability trends the role of assistive technology; barriers posed by health care and other facilities with inaccessible buildings, equipment, and information formats; the needs of young people moving from pediatric to adult health care and of adults experiencing premature aging and secondary health problems; selected issues in health care financing (e.g., risk adjusting payments to health plans, coverage of assistive technology); and the organizing and financing of disability-related research.

The Future of Disability in America is an assessment of both principles and scientific evidence for disability policies and services. This book's recommendations propose steps to eliminate barriers and strengthen the evidence base for future public and private actions to reduce the impact of disability on individuals, families, and society.

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