The Future of Disability in America (2007) / Chapter Skim
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4 Health Care Transitions for Young People
4 Health Care Transitions for Young People
Pages 98-135
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From page 98... ...
The story of Donna Olsen and her son also illustrates that health and disability -- like most of life -- are dynamic and not static for both individuals and societies. With advances in biomedical science and technology, many people with early-onset health conditions are living years, even de
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From page 99... ...
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.
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From page 100... ...
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.
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From page 101... ...
A CRITICAL TRANSITION: FROM CHILD TO ADULT Systematic attention to health care transitions for young people dates back more than two decades.
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From page 102... ...
. 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.
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From page 103... ...
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.
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From page 104... ...
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 Simpler Transition More Complex Transition Single health condition Multiple health conditions Low risk of future health problems High risk of future health problems No dependence on medical Reliance on life-sustaining equipment medical equipment Rare acute illness, medically Frequent acute episodes, stable 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.
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From page 105... ...
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.
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From page 106... ...
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]
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From page 107... ...
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.
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From page 108... ...
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)
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From page 109... ...
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.
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From page 110... ...
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.
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From page 111... ...
. 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.
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From page 112... ...
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.
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From page 113... ...
. because their family's resources are no longer considered in their eligibility determination.6 To support independence and community participation, the U.S.
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From page 114... ...
. 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.
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From page 115... ...
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.
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From page 116... ...
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.
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From page 117... ...
. 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.
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From page 118... ...
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.
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From page 119... ...
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.
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From page 120... ...
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]
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From page 121... ...
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.
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From page 122... ...
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)
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From page 123... ...
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)
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From page 124... ...
. • 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.
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From page 125... ...
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)
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From page 126... ...
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.
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From page 127... ...
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)
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From page 128... ...
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)
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From page 129... ...
. 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.
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From page 130... ...
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)
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From page 131... ...
• 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?
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From page 132... ...
. 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)
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From page 133... ...
, 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.
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From page 134... ...
Recommendation 4.1: To improve the transition of young people with disabilities from pediatric to adult health care, policy makers, pro fessional 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 medi cine residency programs and add skills in the management of individu als 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.
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From page 135... ...
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.
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