Investing in the Health and Well-Being of Young Adults (2015)

7

The Health Care System

Young adults often are perceived as healthy and as low users of health care, and recent attention has focused primarily on enrolling young adults in health care insurance to offset the higher costs associated with care for older adults. However, while young adults are clearly an important priority population for health insurance coverage, there also needs to be an expanded focus on improving the health care system’s ability and capacity to serve them. Important opportunities exist within the health care system to improve young adults’ health, safety, and well-being in both the short and long terms. Yet many young adults face serious challenges in accessing and navigating the health care system, with potentially serious repercussions.

Young adulthood provides an important opportunity for prevention. Serious illnesses or disorders can be avoided or managed better if young adults are engaged in wellness practices and screened for early signs of

or untreated illness. Furthermore, as described in earlier chapters, young adulthood is an age not only of opportunities, but also of risks that can impact lifelong functioning. Keeping young adults as healthy as possible during this critical stage of life may support more positive pathways into mature adulthood. Young adulthood also provides an opportunity to help young adults access and learn to navigate the adult health care system and develop the ability to work directly with health care providers to manage their health care more effectively.

Among the many young adults who are parents, moreover, there is an opportunity to minimize the potential impact of their behavioral and physical health problems on their children. For example, alcohol, tobacco, or drug use during pregnancy increases the likelihood of long-term cognitive and emotional development problems, such as attention-deficit hyperactivity disorder (ADHD), conduct problems, and lower school achievement, in the child (Knopik, 2009; Minnes et al., 2011). And children of depressed parents have three times the risk of anxiety disorders, major depression, and substance dependence compared with children of nondepressed parents (Weissman et al., 2006). Use of cognitive-behavioral therapies with parents with mental illness can help reduce mental health disorders in their children (Siegenthaler et al., 2012).

In addition to the challenges that almost all adults face in accessing and navigating a complicated health system, two challenges are particularly relevant for young adults: the transition from child to adult systems and the onset of certain health conditions, such as serious mental illness. Young adults are transitioning from pediatric to adult health care providers and from the child to the adult behavioral health system, and these new systems of care often differ significantly from those they used as children and adolescents. Some struggle as they assume primary responsibility for their health care for the first time. The health system may not be set up in ways that young adults find easy to use, and providers sometimes lack young adult–specific content knowledge and the skills needed to work effectively with this age group. This transition is widely recognized as challenging for those with

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^* Quotations are from members of the young adult advisory group during their discussions with the committee.

chronic illness, but it is also essential that all young adults make a successful transition to the adult health care system to ensure they receive preventive services that help them remain in good health, as well as the comprehensive array of physical and behavioral health services many of them need. Box 7-1 summarizes barriers discussed in the remainder of this chapter that impede young adults from accessing and continuing to use health care.

Health systems are currently undergoing significant changes that affect both young adults and the general population. A key provision of the Patient Protection and Affordable Care Act (ACA) is the requirement that health insurance plans extend dependent coverage so that young adults can be added to a parent’s plan until they turn 26; several states also had initiated expansion of insurance coverage before the ACA was enacted (Blum et al., in press). Driven by advocacy goals and the fiscal need to enroll healthy individuals to offset the cost of older and sicker individuals, the White House, states, health insurance companies, and advocacy organizations across the country have recently developed campaigns to increase young adult enrollment in insurance plans (e.g., Colorado Consumer Health Initiative and ProgressNow Colorado Education, 2014; HealthSource RI, 2014; Ostrom, 2014; Young Invincibles, 2014). Results of a 2013 survey indicate that of 15 million 19- to 25-year-olds who enrolled in a parent’s plan, 7.8 million would not have been able to do so prior to the ACA (Collins et al., 2013). In addition, federal surveys suggest that 1-3 million previously uninsured young adults have gained coverage since this provision took effect (Blumenthal and Collins, 2014). This change is likely to have a significant impact on young adults’ relationship with the structure and content of the health care system for years to come, and the evolving system offers opportunities for integrating further changes to benefit young adults.

In this chapter, we examine young adults in the health care system and provide recommendations for improving the system’s role in enhancing their health, safety, and well-being. As described in Chapter 1, the term health care is used broadly in this report to include both physical and behavioral health, and the term behavioral health encompasses the promotion of emotional health; the prevention of mental and substance use disorders; and treatments and services for substance abuse, addiction, and mental and substance use disorders (SAMHSA, 2011). Since the epidemiology of young adults is covered in greater depth in Chapters 2 and 6, this chapter focuses on health care delivery.

We first briefly describe where young adults currently receive health care services and what services they use. We then explore in turn transitions from pediatric to adult medical health care systems and from child to adult behavioral health care systems, preventive care for young adults, behavioral health interventions for young adults, health care coverage, and systems issues related to young adults. The chapter ends with conclusions and recommendations for improving health care for young adults. Note that the primary recommendations offered in this chapter are applicable to health systems in a variety of forms and are not restricted to specific implementations of the ACA. Some of our suggestions are not exclusive to young adults, but with the current large influx of young adults into the

system, there is an opportunity to think about how to get the system right for them and then extend it to others.

CURRENT USE OF HEALTH CARE BY YOUNG ADULTS

Comprehensive care with a medical home does not appear to characterize the health care delivery system for young adults as compared with children and adults (for a discussion of medical homes for 10- to 17-year-olds, see Adams et al., 2013).¹ An analysis of health care utilization conducted before the passage of the ACA found that young adults had significantly lower health care system utilization rates than other groups (see Table 7-1). Specifically, this age group had significantly lower rates of office-based and dental visits. Of interest is that young adults had significantly higher emergency room visit rates compared with those immediately younger and older than them. In addition, the use of specialty psychiatric services by those with mental health conditions falls from approximately 20 percent of adolescents to about 10 percent of young adults (Copeland et al., in press). The use of services in general—including medical care, educational and job services, and services provided through organizations such as Big Brother—by individuals with mental health conditions drops from about half of adolescents to a quarter of young adults.

The prevalence and trends of the major health-related problems affecting young adults are discussed extensively in Chapters 2 and 6. Table 7-2 highlights the percentages of young adults utilizing the various types of health care services. This table shows that small percentages of young adults received care for substance use and mental health disorders, even though more than 50 percent reported having a usual source of care and having received a routine general checkup within the past 12 months, and even though early young adulthood is often when the burden of illness emerges for substance abuse and mental health conditions. Emergency rooms represent a major component of care for young adults, utilized by an estimated 15 to 20 percent of this age group (Fortuna et al., 2010; Lau et al., 2014a), although evidence from three states suggests that the ACA

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¹ The patient-centered medical home is a model for primary care that promotes effective care coordination, accessibility, quality, and safety (AAFP et al., 2007; IOM, 2013a).

TABLE 7-1 Past-Year Health Care Utilization Rates by Age Group: 2009 Medical Expenditure Panel Survey (rates adjusted for pregnancy)

NOTES: Hospital outpatient visits are to general clinics that are hospital-based. ***p<0.001, **p<0.01, *p<0.05.
SOURCES: Adapted from Lau et al., 2013a, 2014a.

TABLE 7-2 Health Service Utilization by Type of Service

NOTE: MEPS = Medical Expenditure Panel Survey; NAMCS = National Ambulatory Medical Care Survey; NHIS = National Health Information Survey; NSDUH = National Survey on Drug Use and Health; NSFG = National Survey of Family Growth.
SOURCES: MEPS: Lau et al., 2014b; NAMCS: Fortuna et al., 2010; NHIS: Vujicic et al., 2014; NSDUH: SAMHSA, 2013a,b; NSFG: Hall et al., 2012.

has reduced emergency department use (Hernandez-Boussard et al., 2014). There appear to be no population data documenting the use of services for management of chronic medical or mental health conditions for young adults.

TRANSITIONS

Most young adults face the challenge of accessing a new health care system and new health care team independently of their parents or guardians. In addition to the differences between pediatric and adult health care systems and the possibility that the adult system is less well suited to their developmental stage, they may have changes in insurance coverage and face confidentiality concerns. These challenges are amplified when the young

adult has a chronic physical or mental health condition that requires ongoing coordinated care. Pediatric providers may not prepare adolescents for an adult model of care, and there is a lack of adult providers who are familiar with managing the adult progression of childhood chronic diseases (AAP et al., 2011). In this section, we first examine the transition from pediatric to adult medical health care for young adults with chronic health conditions, and we then we explore transitions in behavioral health care and substance abuse treatment. While much of the published literature focuses on the transition challenges for those with chronic illness, requiring close medical care, there appears to be no systematic coordination of the transition to adult care for those without chronic medical conditions. It is important to improve the transition process for all youth moving to the adult health care system, not just those who have identified chronic medical conditions.

Transitions for Young Adults with Chronic Health Conditions

As noted, most transition research has focused on young adults with chronic health conditions, including cystic fibrosis, rheumatological diseases, diabetes mellitus, sickle cell anemia, acute lymphocytic leukemia (ALL), organ transplant, inflammatory bowel disease, and congenital heart disease (CHD). In this context, transition has been defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems” (Blum et al., 1993, p. 570). Although it is recommended that transition planning begin during early adolescence, expert consensus suggests that the actual transfer should generally occur during the early young adult years, between ages 18 and 21 (AAP et al., 2011). Before young adults reach the age at which they can legally make their own decisions regarding their care, which could include discontinuing or not accepting available treatment, it is important that they understand their own health conditions and have the tools needed to make such decisions.

The transition from pediatric to adult care is a time of vulnerability

that can result in poor outcomes among individuals with chronic health conditions. Poor health outcomes can result from discontinuities of care during the transition process itself, including difficulties identifying a new care team. In a survey of more than 900 adults with CHD, 42 percent reported a lapse of care of more than 3 years, and 8 percent reported a lapse of greater than 10 years; the most frequent age at which lapses occurred was 20 (Gurvitz et al., 2013). Further, a study of 360 young adults (aged 19-21) in Canada with CHD showed that more than one-quarter had not seen a cardiologist since the age of 18 (Reid et al., 2004). These health care lapses among young adults with CHD result in poor health outcomes (Kovacs and McCrindle, 2014).

Concerns also arise regarding young adults’ health outcomes after they have transitioned into adult care. For example, a study of 185 participants found that young adults with diabetes had poor glycemic control after they transitioned from pediatric to adult care compared with those young adults who did not make this transition (Lotstein et al., 2013). A large retrospective study of sickle cell disease–related emergency department visits and hospitalizations found that young adults aged 18-30 had higher rates of acute care encounters and rehospitalizations compared with those immediately younger and older (Brousseau et al., 2010). A longitudinal study of individuals with sickle cell disease also found that deaths most frequently occurred after age 18 and after the transfer to adult care (Quinn et al., 2010), although stronger data are needed to fully support the conclusion that the transfer caused the poorer outcomes (DeBaun and Telfair, 2012). In addition, a recent study found increased intubation risk and longer lengths of stay for those young adults (aged 16-25) with sickle cell disease and acute chest syndrome who were cared for in adult hospitals versus those who were cared for in pediatric hospitals (Jan et al., 2013).

Barriers to implementing an effective system to improve transitions have been well documented (e.g., McManus et al., 2008). Some of the critical barriers include those mentioned above: a lack of trained adult providers able to accept young adults with adult manifestations of childhood chronic illnesses, apprehension among patients and families and pediatric providers that care will be compromised during transition, lack of reimbursement for recommended transition practices, a lack of tools with which to assess readiness for transition, and a lack of time for the provider (McManus et al., 2008). The uptake of better practices also has been hampered by the lack of widespread dissemination of research findings.

Despite these challenges, it is possible to plan for a smooth transition with good outcomes. In the case of cystic fibrosis, a chronic illness for which more programs have been implemented for transition care relative to most childhood conditions, a recent study contradicts many previous studies, finding that those who transitioned to adult care had a less rapid

decline in respiratory status than patients with similar characteristics who stayed in pediatric care (Tuchman and Schwartz, 2013). These inconsistent research results necessitate greater focus on what constitutes the content of the most effective health care for these and other populations of young adults.

Along with increases in life expectancy in recent decades, many more children with serious childhood-onset diseases are now living into the young adult years. For example, 25 years ago, approximately 30 percent of people with cystic fibrosis were age 18 or older, whereas today approximately half of people with cystic fibrosis are adults, and the median predicted survival age is over 40 (CFF, 2012). This change underscores the need for a successful transition to adult health care. Next we further explore reasons behind the poor outcomes associated with that transition.

Limitations of Adult Health Care Providers’ Familiarity with the Disease Process and Developmental Needs of Young Adults

Because many individuals with serious congenital and childhood-onset diseases are now living into the young adult years, many are now receiving care from adult-focused health professionals who previously did not see patients with these diseases and may not have received training in these areas (e.g., Tuchman et al., 2010). From a neurosurgery perspective, for example, caring for an individual with childhood-onset hydrocephalus is very different from caring for an adult in whom this condition emerged as a result of hemorrhage, infection, or tumor (Simon et al., 2009). In a survey, only 15 percent of general internists felt comfortable providing primary care to adults with cystic fibrosis, and 32 percent felt comfortable providing primary care to adults with sickle cell disease (Okumura et al., 2008). In another survey, a lack of training was cited by 24 percent of general internists as a significant or severe limitation on their ability to treat young adults with childhood-onset chronic diseases, although these reports were not statistically associated with physicians’ perceived quality of care (Okumura et al., 2010).

In addition, disease manifestation in young adults may differ from that in older adults. Health care providers who provide care for conditions that most commonly affect older adults, such as cancer, may be less familiar with the disease process in young adults. Studies on adolescent and young adult oncology training for health professionals have emphasized the importance of understanding tumor biology, pointing out that the epidemiology and biology are different for many cancers in adolescents and young

adults compared with children and older adults (Bleyer and Barr, 2009; Bleyer et al., 2008; Hayes-Lattin et al., 2010).² Similarly, young adults may have different concerns and psychosocial needs than older adults. For example, fertility preservation is a great concern for young adults with cancer (Gupta et al., 2013). Young adults with cancer also have a high desire for information and services in the areas of cancer diagnosis, nutrition, physical activity, complementary and alternative services, and health insurance assistance (Gupta et al., 2013; Zebrack, 2008). However, research also indicates that these needs frequently go unmet; in a survey of 217 young adults with cancer, 40-50 percent of respondents indicated that these needs were unmet (Zebrack, 2008). These young adults also expressed needs for or interests in services and supports such as “camp programs and retreats, counseling or guidance related to sexuality, counseling for family members, infertility treatment and adoption services, transportation assistance, child care, and alcohol or drug abuse counseling” (Zebrack, 2008, p. 1). Again, more than 50 percent reported that these needs were unmet. A comparison by age showed that young adults aged 18-29 had greater unmet needs than those aged 30-40.

Differences Between the Child and Adult Medical Care Systems

In pediatric longitudinal studies over the last few decades, the 5-year survival rate for pediatric ALL has increased to 90 percent (Robison, 2011). Unfortunately, there has been no similar increase for adolescent and young adult ALL; currently, the overall survival rate for adults is 30-40 percent (Narayanan and Shami, 2012). Yet there is evidence that treatment in a pediatric cancer center increases survival for adolescents and young adults (De Bont et al., 2004; Peppercorn et al., 2004; Ramanujachar et al., 2006). Box 7-2 examines potential reasons for this difference. In the case of cancer treatment, it may be that the transition to adult care should be based not on age but on disease outcome, meaning that some people may need to have pediatric subspecialty care even though they have transitioned to adult primary care and taken on adult roles in other areas of life.

Like some adult providers, adult health systems are new to providing care to large numbers of young adults with serious childhood-onset diseases. Until the 1980s, for example, only childhood cystic fibrosis centers existed (Tuchman et al., 2010). Now that many more individuals with the disease are living well into adulthood, adult programs have been developing, but in many cases they are provided in the same location as pediatric programs, and adult patients often are hospitalized in pediatric settings

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² In this field, “adolescents and young adults with cancer” are typically defined as those aged 15-39 (NCI, 2014).

(Tuchman et al., 2010). Thus the age-appropriateness of care offered for adult patients in a pediatric setting is a concern (AAP et al., 2011). In the survey by Okumura and colleagues, physicians responded that a lack of subspecialty access and having an office structure that did not facilitate coordination of care for young adults with special health care needs had

the greatest negative impact on their perceived quality of care (Okumura et al., 2010). In another study, internists saw a need to obtain the consent of young adults for family involvement in their care (Peter et al., 2009).

Studies on the perspectives of patients, providers, and families underscore the general discomfort with and lack of a structured process for the transition to adult health care (Peter et al., 2009; Reiss et al., 2005). Some pediatric providers who have developed successful relationships with patients and their families delay transitioning young adults to adult care because of “difficulty letting go,” previous experiences with difficult patient transitions, and the perception that the transfer will result in negative health outcomes (Reiss et al., 2005). An American Academy of Pediatrics (AAP) survey of pediatric providers’ activities related to transition found that few offered youth and their families preparation for transitioning to an adult model of care at age 18, communicated directly with the adult provider, offered medical summaries for the youth/family and the adult provider, and/or created a medical transition plan (McManus et al., 2008). Also of note is the internist perspective that there is a need for better training in congenital and childhood-onset conditions and an urgent need for more training for adult subspecialists (Peter et al., 2009). The perspectives of patients and physicians, coupled with concern for financial support to care for these complex patients, are important factors in successful planning for transition by all concerned (Peter et al., 2009).

Efforts to Improve the Transition Process

The transition from pediatric to adult care has been identified as a problem for decades. Yet there has been minimal systematic implementation and evaluation of institutional change to address concerns about the increasing numbers of pediatric patients with chronic conditions who are now living into adulthood.

Multiple consensus studies have been published on the transition from pediatric to adult care, starting with a Surgeon’s General Conference in 1989 (AAP, 1996; AAP et al., 2002, 2011; Blum et al., 1993; Magrab and Millar, 1989). The 2011 recommendations of the AAP, American Academy of Family Physicians (AAFP), and American College of Physicians (ACP) identify best practices in transitions (see Box 7-3)

and state that additional elements of health care delivery and reimbursement systems are needed to achieve a successful transition (AAP et al., 2011). Recently, the Agency for Healthcare Research and Quality (AHRQ) published a technical brief on transition for children with special health care needs that reiterates many of the same findings published in 1989 (McPheeters et al., 2014). Efforts also have been made to apply the Institute for Healthcare Improvement’s Triple Aim³ framework to this transition (Benson et al., 2014; Berwick et al., 2008).

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³ The Institute for Healthcare Improvement’s Triple Aim framework is aimed at achieving three goals: “Improving the patient experience of care (including quality and satisfaction); improving the health of populations; and reducing the per capita cost of health care” (IHI, 2014).

Various federal agencies support transition-related activities. For example, the Got Transition initiative/Center for Health Care Transition Improvement, a cooperative agreement between the Health Resources and Services Administration’s (HRSA’s) Maternal and Child Health Bureau and the National Alliance to Advance Adolescent Health, aims to improve health care transitions by developing and expanding the use of transition materials, training the workforce, enhancing youth and parent leadership, promoting health system changes, and serving as a resource clearinghouse (The National Alliance to Advance Adolescent Health, 2014a). This initiative has developed updated recommended core elements (Six Core Elements of Transition) for pediatric, internal medicine, family medicine, and med-peds⁴ practices (The National Alliance to Advance Adolescent Health, 2014b):

• establishing a transition policy,
• tracking and monitoring transition progress,
• conducting transition readiness assessments,
• planning for adult care,
• transferring into adult care (if applicable), and
• integrating the young adult into an adult practice.

Materials are organized and customized for three different situations, with corresponding types of health care providers:

• transitioning youth to adult health care providers (pediatric, family medicine, and med-peds providers);
• transitioning to an adult approach to health care without changing providers (family medicine and med-peds providers); and
• integrating young adults into adult health care (internal medicine, family medicine, and med-peds providers) (The National Alliance to Advance Adolescent Health, 2014b).

These recommended core elements and available customizable tools are based on the AAP/ACP/AAFP Clinical Report (2011) and were created using the quality improvement approach outlined by the Institute for Healthcare Improvement’s change framework. This approach may set the stage for less fragmentation of care in transition, with clear guidance for coordination and communication between pediatric and adult providers, improved preparation for the transfer to adult health care, improved integration of young adults as a special population into the adult health care setting, and ways to evaluate the transition process.

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⁴ Combined internal medicine and pediatric practice.

Similarly, the Substance Abuse and Mental Health Services Administration (SAMHSA) sponsors the Emerging Adulthood Initiative. This initiative is focused on improving outcomes among adolescents and young adults with serious mental health conditions as they transition to adulthood, including transitions in health care (Georgetown University Center for Child and Human Development, 2014).

Beyond the transition issues for children with chronic medical conditions, health systems need to accommodate the needs of young adults who do not have a chronic condition but still have increased health care needs due to their stage of development and heath behaviors and the emergence of new mental and physical health conditions. The increased emergency room utilization noted above may speak to the difficulty experienced by young adults in transitioning to the adult health care system and their unmet health needs.

Behavioral Health Care Transitions

Behavioral health care systems typically are separate from medical health care systems, and include both mental health and substance abuse systems. The 1999 Surgeon General’s report on mental health describes the “de facto” mental health system as comprising four sectors (a description that applies equally well to substance abuse services): “the specialty mental health sector, the general medical/primary care sector, the human services sector, and the voluntary support network sector” (HHS, 1999, p. 73).

Funding of this de facto system generally is split between public/government sources (e.g., Medicaid, Medicare, state funding) and private sources (including services provided through private funding and services provided directly by private agencies, such as employer-provided insurance) (HHS, 1999). Behavioral health services may be office based (typically 1-6 hours/week), home based (usually more intensive than office-based treatment), intensive outpatient (in which clients sleep at home but receive treatment for several hours per day), residential/inpatient, and intensive inpatient (which includes more extensive medical care, typically for a relatively brief period of time). Until recently, private insurance often limited payment for treatment to a restrictive amount that was easily exceeded by more serious treatment needs. Individuals then either paid out of pocket or applied to the public sector for services (HHS, 1999).

The Mental Health Parity and Addiction Equity Act, enacted in 2008, targets reducing the large disparity in insurance coverage for behavioral and physical health treatment. The legislation requires insurance groups to provide the same level of benefits they provide for general medical treatment for mental health or substance use disorders. Under final rules for this act, effective July 1, 2014, deductibles for behavioral health must be on par with

those for similar services for other medical conditions, and treatment limits or co-pays more restrictive than those for medical/surgical services are prohibited. Standards for reimbursement for psychosocial treatments also are being discussed, and the Institute of Medicine (IOM) has been asked to conduct a study to develop a framework for establishing efficacy standards for psychosocial interventions used to treat mental disorders; the results of these discussions will have important implications for young adults (Insel, 2014; IOM, 2014). In addition, the ACA now prohibits lifetime or annual dollar limits for essential health benefits, which include mental health and substance abuse care (CMS, 2014a). Future research examining the impact of these new rules and requirements will help determine the extent to which needed behavioral health care is more affordable and accessible to young adults.

Aging Out of Child-Serving Systems

For young adults with mental health or substance use treatment needs, an additional factor that complicates service delivery is the many funding streams, state-funded services, and ways of organizing treatment that are age defined (Davis et al., 2009). Age-defined services and systems include special education (ending at age 21), foster care (typically ending at age 18 or 21), juvenile justice (typically ending at age 17 or 18), and adult criminal justice (starting at ages 16, 17, or 18). Public mental health systems also are typically divided organizationally and fiscally between child and adult services (Davis, 2003; Davis et al., 2006). Each of these systems may provide or coordinate behavioral health services. Thus, young adulthood marks an age when particularly vulnerable individuals’ behavioral health services are disrupted by “aging out” of children’s service systems. Continuity of care as individuals age out is dependent on access and strong connections to behavioral health services from adult systems. In addition, within public mental health services, policies that define eligibility criteria or target populations for services are distinctly different for child and adult mental health (Davis and Koroloff, 2006), with adult criteria typically being more narrow. This produces a barrier to access based on changing age, not changing need.

Another factor that contributes to discontinuities in care for any young adult with health care needs is the age-based eligibility criteria for Medicaid

and Supplemental Security Income (SSI).⁵ Medicaid has different eligibility criteria for children (dependent members of a household) and adults. Those who age out can fail to meet the adult criteria (Pullman et al., 2010). Qualifying for Medicaid by meeting the Social Security Administration’s (SSA’s) definition of disability also is impacted by age-based definitions of “disability” (e.g., ADHD is a qualifying mental disorder for children but not for adults). According to SSA, each year tens of thousands of child SSI recipients reach age 18, and their medical eligibility is redetermined according to adult disability standards (Hemmeter, 2012). Overall, about one-third of these children (37 percent) lose eligibility (Hemmeter, 2012). Among youth with mental health disorders that fall under the “other mental disorders” category (e.g., anxiety, affective, and disruptive behavior disorders)—who make up 28 percent of all children receiving SSI after reaching age 18—more than half (53 percent) lose eligibility upon redetermination (Hemmeter, 2012). Overall, these age-based criteria contribute to higher risk of Medicaid disenrollment during young adulthood, even among highly vulnerable clinical populations (Davis et al., 2014; Pullman et al., 2010), and may contribute to reduced access to needed behavioral health care (Slade et al., 2014). Although discussed here in the context of behavioral health transitions, many of these same discontinuities apply more generally to health care coverage issues for young adults.

Differences Between Child and Adult Mental Health Systems

Several typical treatment culture differences characterize child and adult mental health systems. The first is the manner in which parental figures are involved. In their seminal work defining system-of-care principles for children with emotional disturbance, Stroul and Friedman (1986) focus on the importance of partnering with parents to provide appropriate treatment and supports for their child. Since that work was published, child mental health systems have largely changed to work more closely with parental figures in developing and implementing treatment and service plans for their children (Stroul, 2002). Approaches such as the wraparound process (VanDenBerg and Grealish, 1996) and multisystemic therapy (Henggeler et al., 1998) are formalized means of partnering with family members to address the child’s mental health condition and resulting functional impairments. However, family involvement is less emphasized in adult mental health systems, and once they turn 18, youth can legally restrict providers from sharing any treatment information with family members. Yet client factors that facilitate shared decision making often are still immature in the

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⁵ In most states, SSI beneficiaries are automatically eligible for Medicaid, while other states require a separate application and determination of eligibility (SSA, 2014).

youngest adults (Delman, 2012; Joseph-William et al., 2014). Given the unique role parents can play in the lives of young adults (as described in Chapter 3) and the help they could provide with decision making, excluding their potential supports may compromise the efficacy of treatment for a young adult needing behavioral health services. Indeed, family cognitive-behavioral treatment appears to be an important component of early intervention in psychosis (Gleeson et al., 2009).

Another substantial difference in practice between child and adult mental health systems is related to care coordination. Children with serious mental health conditions often are involved in multiple systems, including child welfare, juvenile justice, special education, and mental health. Providers in these systems typically are aware of the involvement of other systems, and often communicate and coordinate with them. Adult mental health, by contrast, is often insular, so that services such as vocational rehabilitation or drug treatment are provided within the mental health system rather than in partnership with those systems (Davis et al., 2012b). Disconnects in cross-system connections, especially between child and adult systems, can cause disruptions or redundancies in services, especially for 18- to 21-year-olds who are still involved in child systems.

Finally, adult mental health systems often fail to recognize the unique needs of young adults, and there are few interventions with strong evidence of efficacy for this age group (GAO, 2008). With the exception of interventions to treat early psychosis, few interventions have been devised specifically for this age group, and all are in early stages of development (Davis, 2012a). Evidence of the efficacy of evidence-based adult or child interventions with a young adult population is limited (Davis et al., 2012a). Clinical trials including this age group as part of a larger age group (e.g., studies of adults in general) cannot sufficiently establish efficacy in the young adult population. For an age effect to be detected, a large sample size of the young adult age group is needed, and few age group comparisons have been conducted thus far in published studies. However, some studies have reported significant differences in outcomes or relative effectiveness of psychosocial interventions between older and younger age groups (e.g., Burke-Miller et al., 2012; Haddock et al., 2006; Kaplan et al., 2012; Rice et al., 1993). Applying interventions that have been established in older or younger populations and adapting those interventions for young adults is a reasonable starting point for research and service provision. For example, the individual placement and support model for adults with severe mental illness (Bond, 1998) has been adapted and tested for use with young adults with first or early episodes of psychosis (Killackey et al., 2008; Major et al., 2010; Porteous and Waghorn, 2007), with results providing support for its use in this age group.

Substance Abuse Care Transitions

Many of the issues of transition faced by young adults with mental health conditions are also faced by those with substance use disorders: involvement in multiple child systems that end variably between ages 18 and 21, adolescent and adult treatment providers who are trained to work with one but not the other age group, stricter diagnostic criteria for adult than child Medicaid coverage for substance abuse-based eligibility, and few interventions with efficacy for reducing substance use specifically in young adults. Several of the unique aspects of the substance use system are worth noting, however. Foremost is the heightened stigma of substance abuse problems. Most substance use is illegal, and alcohol use is illegal for young adults under age 21. Recreational use of marijuana also is illegal except in Washington and Colorado for those over the age of 21. Moreover, use of substances often is seen as a moral issue, and problematic substance use is viewed as a volitional problem rather than a chronic illness. The legal issues and moral values have two major consequences—reducing funding for treatment and posing a barrier to treatment seeking (Cutcliffe and Saadeh, 2014; Drucker, 2012). The result is a scarcity of substance abuse services and long wait lists for those services.

Brief substance use treatments for which there is growing evidence of efficacy are increasingly available on college campuses, but for the many young adults with substance use problems that are not in college or the military, or for college students whose substance abuse problems require more than brief treatment, the challenge of finding a provider after the significant step of acknowledging the need for help is a formidable barrier to care. The scarcity of treatment resources, in combination with the need for young adults to advocate on their own behalf despite their inexperience in doing so, can lead to a large unmet need for treatment in this age group (Tighe and Saxe, 2006). Mental health and substance use disorders can further impede young adults’ abilities to advocate for themselves. Young adults’ inexperience with self-advocacy also means that simply providing them with information about how and where to obtain health insurance or care, while important, is not sufficient. Also necessary are active and effective preparation of adolescents and young adults and outreach by the health care system to help them access and complete needed treatment.

PREVENTIVE CARE FOR YOUNG ADULTS

The majority of health problems during young adulthood are preventable, and behaviors associated with negative health outcomes have high prevalence among young adults, as described in Chapter 6. These behaviors often are also responsible for the onset of many chronic health conditions

(e.g., obesity, diabetes, addiction to substances, mental health disorders) that lead not only to functional impairment throughout adulthood but also to a shortened life span. Many of these behaviors represent an opportunity for cessation of harmful behaviors, the development of healthy alternatives, or further entrenchment of the behaviors that threaten adult health.

Use of Preventive Care in Young Adults

Knowledge of the use and delivery of preventive services for young adults is limited by the lack of attention to this age group in clinical delivery systems and health services research noted throughout this report. A few recent studies, either population-based assessments or based within health care delivery systems, have documented the relatively low rates of preventive services in this population (Fortuna et al., 2009; Lau et al., 2013b; see Table 7-3). Considerable variation is related to gender, race/ethnicity, and having a usual source of care. With the exception of influenza vaccination, young females are more likely than males to receive preventive services (Lau et al., 2013b). Young adults who have a source of care they typically use also are more likely to receive preventive services. Black young adults are more likely than their white counterparts to receive the full range of sexually transmitted infection (STI), cholesterol, and diet counseling (Lau et al., 2013b). Compared with whites, Asians are less likely to receive STI

TABLE 7-3 Percentage of Visits During Which Preventive Counseling Was Provided to Young Adults (aged 20-29), 1996-2006

NOTES: “Mental health” does not include substance abuse or use; STI = sexually transmitted infection.

Primary care includes internal medicine, pediatrics, family practice, general practice, general preventive medicine, or public health or general preventive medicine.

^a Data were available for 1996-2000 and 2005-2006.

^b Data were available for 2001-2006.

^c Data were available for 1996-2000.

SOURCE: Adapted from Fortuna et al., 2009.

TABLE 7-4 Past-Year Receipt of Screening or Preventive Services Among Young Adults Aged 18-25 Who Had a Past-Year Visit, National Health Interview Survey, 2011

SOURCE: Analysis done by Sally H. Adams @ University of California, San Francisco, Division of Adolescent & Young Adult Medicine.

and emotional health screening, and Latinos/as are more likely to receive cholesterol and diet counseling (Lau et al., 2013b).

Analysis of National Health Interview Survey (NHIS) data from 2011 reveals that among young adults who had a clinical visit during the past year, access to a range of preventive services ranged in frequency from 87 percent receiving a blood pressure check to 22 percent receiving a fasting blood sugar check (see Table 7-4). It is important to note that such preventive screening can take place during any clinical encounter with a provider or in alternative delivery systems (e.g., pharmacies, work or school sites). Providers need to be encouraged to use any visit as an opportunity to address a component of preventive care.

Guidelines for Preventive Care for Young Adults

This section examines existing guidelines, their implementation, and monitoring of adherence.

Existing Guidelines

There continue to be no specific medical, behavioral, or oral health guidelines focused specifically on the young adult population. The clinical preventive services recommendations⁶ of the U.S. Preventive Services Task Force (USPSTF) consist of evidence-based recommendations across several specific health areas. For the past two decades, there has been a strong movement toward developing consensus-based guidelines for care for adolescents, starting with the American Medical Association’s Guidelines for

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⁶ See http://www.uspreventiveservicestaskforce.org/recommendations.htm for details (accessed October 22, 2014).

Adolescent Preventive Services: Recommendations and Rationale (Elster and Kuznets, 1994) and Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents (Green, 1994). The most recent Bright Futures edition includes preventive care recommendations up to age 21 (Hagan et al., 2008). A revision of Bright Futures is expected to be released in 2015.

Several groups have called for the development of care guidelines for young adults (Callahan and Cooper, 2010; Fortuna et al., 2009; Irwin, 2010; Ozer et al., 2012). Recently, Ozer and colleagues (2012) conducted an analysis to identify evidence-based guidelines for young adults by reviewing professional consensus guidelines and the evidence-based guidelines from the USPSTF that include young adults (aged 18-26). They found that four groups—AAP, the American Congress of Gynecologists and Obstetricians (ACOG), AAFP, and ACP—had developed guidelines relevant to young adults.

Increasingly, health care plans have incorporated an annual preventive care visit with limited or no co-pays as part of the core benefits for subscribers. The ACA has expanded the opportunity for young adults to receive an annual preventive visit with no associated co-payments, and a recent study documents an increase in young adults’ receipt of a general checkup in the first year of implementation of the ACA—48 percent in 2011 as compared with 44 percent in 2009 (Lau et al., 2014b). Table 7-5, adapted from Ozer et al. (2012), lists the preventive services that most private plans must cover under the ACA, which include the evidence-based screening and counseling services rated highly in either Category A or B by the USPSTF,⁷ the Advisory Committee on Immunization Practices’ recommended immunizations, the Bright Futures recommendations, and the services specified in the Women’s Preventive Services Guidelines (HHS, 2012). The Women’s Preventive Services Guidelines (HRSA, 2014; IOM, 2011) specify that in addition to the services provided for all adults, the services

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⁷ The USPSTF defines Category A as follows: “The USPSTF recommends the service. There is high certainty that the net benefit is substantial.” Category B is defined as follows: “The USPSTF recommends the service. There is high certainty that the net benefit is moderate or there is moderate certainty that the net benefit is moderate to substantial” (USPSTF, 2012).

TABLE 7-5 Preventive Health Care Services for Young Adults (aged 18-26) Covered Under the Affordable Care Act

^* If at higher risk.

NOTE: STI = sexually transmitted infection.

SOURCES: Adapted from Ozer et al., 2012, 2013. Original sources are the evidence-based screening and counseling services rated highly either in Category A or B by the USPSTF, immunizations recommended by the Advisory Committee on Immunization Practices, the Bright Futures recommendations, and the services specified in the Women’s Preventive Services Guidelines.

listed in Table 7-5 must be provided to women by private plans without cost sharing (Armstrong, 2012a,b; HHS, 2012; HRSA, 2014). Note that Table 7-5 summarizes what evidence-based services are currently covered, and does not provide a comprehensive list of what this committee deems should be covered.

Comprehensive dental guidelines for young adults could not be identified, although the American Academy of Pediatric Dentistry recommends

that a dental home be established when the adolescent patient, family, and dentist agree that it is time to transition to adult dental care (AAPD, 2013).

Implementation of Guidelines

Multiple approaches can be used to incorporate preventive guidelines into clinical practice for young adults. At present, however, there is no consensus among health professional organizations, the USPSTF, health care plans, and state and federal agencies on guidelines that should be used as the starting point for implementation.

Barriers that impede the delivery of preventive services in clinical settings include both clinician factors (e.g., lack of knowledge of guidelines; attitudes toward the efficacy of preventive services; and lack of training, skills, and confidence to deliver the services) and external factors (e.g., time constraints, lack of screening tools, lack of reimbursement) (e.g., Ozer et al., 2005). Efforts comparable to those over the past two decades to increase the delivery of preventive services to adolescents are just beginning for young adults. Multiple models shown to increase preventive screening in adolescents could be adapted for use for young adults (Boekeloo and Griffin, 2007; Boekeloo et al., 2003; Klein et al., 2003; Olson et al., 2009; Ozer, 2007; Ozer et al., 2005; Sanci et al., 2012; Stevens et al., 2008; Tylee et al., 2007).

Monitoring of Adherence to Guidelines for Young Adult Preventive Care

No mechanisms for monitoring adherence to guidelines relevant to young adult preventive care currently exist. With the implementation of preventive care under the ACA, it will be necessary to identify national- and state-level datasets that can be used to monitor the implementation of these guidelines. Monitoring guideline adherence for young adult preventive care is important in both the public health and health care domains. Below are identified existing datasets that could be used for this purpose and describe associated challenges.

Four nationally representative ongoing surveys that include some measures of preventive screening and counseling for adults in general can be accessed to obtain estimates specifically for young adults: the NHIS, a survey of health status and health care access; the Medical Expenditures Panel Survey (MEPS), a household survey of health, health care, and health care expenditures; the National Ambulatory Medical Care Survey, which monitors the services patients receive from clinicians in ambulatory settings; and the Behavioral Risk Factor Surveillance System, a survey of behavioral risk factors associated with major morbidity and mortality (AHRQ, 2014; CDC, 2014a,b,c). In addition, the Centers for Medicare & Medicaid Ser-

vices (CMS) is developing and implementing a revised set of adult health care quality measures in conjunction with AHRQ (CMS, 2014e; GPO, 2012; Mann, 2012). Many of these measures are applicable to young adults (e.g., influenza vaccinations, body mass index assessment, screening for clinical depression) and will be of use in assessing the implementation of clinical preventive screening in Medicaid-enrolled young adults. The use of these measures is encouraged by CMS but is optional for the states. It is not clear how states will choose the measures on which they will report and what capability they will have to access data specific to young adults.

Despite the availability of these data, researchers, policy makers, funders, and other stakeholders need to have the expertise to break out the specific ages that make up young adulthood, examine state-level data, and differentiate specific subpopulations. Moreover, some of these datasets are more readily accessible than others. In many cases, online analysis can be carried out, but there usually are restrictions on the specificity of age groups and the breadth of subgroup analyses possible. In addition, most national survey data centers allow analysis of state-level data upon request, but the datasets are not always sufficiently large to study the states with smaller populations.

For both national- and state-level data analysis, data elements that help differentiate special populations may be insufficient. Gaps may exist for youth who have been in foster care or were recently homeless or incarcerated. For the CMS data, only young adults enrolled in Medicaid will be able to be assessed with the new adult core measures.

Some of the survey procedures also may introduce bias into the survey responses. For example, the MEPS data collection procedures identify the adult respondent for the entire household, including young adults, as the adult who is most knowledgeable about the health care utilization and expenditures of all household members (AHRQ, 2014). For many young adults, parents may be unaware of health care accessed confidentially; through college health services; or through other systems of care, such as public health clinics and pharmacies (Lau et al., 2014a).

In addition, current adult health care monitoring efforts do not cover many key topics relevant to young adult screening and counseling, such as obesity-related issues, substance use, and reproductive health issues. When these topics are assessed, a lack of specificity often limits the utility of the assessment. For example, the USPSTF recommends that young adults have their blood pressure screened every 2 years when it is is below 120/80 mm Hg (NAHIC, 2014). Yet surveys such as the NHIS asking about the recency of blood pressure monitoring do not always ask respondents to report their blood pressure, so adherence to this guideline cannot be determined.

Preventive Care for Behavioral Health Conditions

There are fewer rigorously tested approaches for preventing behavioral health disorders than exist for many physical disorders (e.g., encouraging diet or exercise in all patients to reduce the likelihood of their developing cardiovascular disease). One example of an accessible behavioral health prevention approach is encouraging aerobic physical activity to prevent the development of depression (Mammen and Faulkner, 2013).

Most prevention approaches for behavioral health target children and adolescents based on the young ages at which many behavioral health conditions develop and the ready access to these populations in schools (IOM, 1994; Stice et al., 2009). Studies of prevention interventions for conditions common to young adults—including Web-based technologies to reduce the risk of developing depression (Van Voorhees et al., 2011) and anxiety (Braithwaite and Fincham, 2007; Christensen et al., 2010; Cukrowicz and Joiner, 2007)—have targeted primarily college students. SAMHSA funds the Campus Suicide Prevention Grants⁸ to support efforts at postsecondary institutions to prevent suicide and to improve services for students with problems that put them at risk of suicide, such as depression, substance abuse, and other behavioral health issues; however, there are currently no rigorously tested interventions to implement. A growing body of research documents brief interventions for reducing college binge drinking with some evidence of efficacy (e.g., Kulesza et al., 2013). Preliminary evidence also suggests that parents who talk with their children about binge drinking before they depart for college can decrease excessive drinking and alter drinking perceptions (Turrisi et al., 2001).

Instead of going to college, some young adults enter the military after high school. As discussed in Chapter 5, military personnel who have been deployed are at heightened risk of developing posttraumatic stress disorder and other mood and anxiety disorders and for suicide. While several interventions have been developed for use both before and during deployment to prevent the development of posttraumatic stress disorder or suicide, none have as yet been rigorously tested (Hoge and Castro, 2012; Hourani et al., 2011). Predeployment mental health screening also has been used to either divert some individuals from deployment or provide additional mental health support (mainly medication) during deployment (Warner et al., 2011). There is evidence of reduced mental health needs in brigades with screening compared with those without (Warner et al., 2011).

For civilian young adults not enrolled in college or in colleges that offer some preventive interventions, most interventions are designed for

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⁸ See http://www.samhsa.gov/grants/2013/sm-13-009.aspx for details (accessed October 22, 2014).

individuals at high risk of developing a mental health disorder or with conditions that increase this risk. For example, cognitive-behavioral interventions can reduce the risk of developing posttraumatic stress disorder if administered within days or weeks after a traumatic event (Agorastos et al., 2011). Given the high risk of violent victimization in young adulthood, including sexual violence and witnessing violence, prevention of trauma symptoms and posttraumatic stress disorder is particularly relevant in this age group.

The experience of psychological stress is pervasive in young adults and may contribute to the subsequent development of behavioral or physical health disorders, as described in Chapter 6. A variety of stress reduction techniques are available for which there is evidence of efficacy in adults, such as mindfulness-based approaches or cognitive therapy (Abbott et al., 2014; Querstret and Cropley, 2013), cognitive-behavioral techniques (Cruess et al., 1999), and relaxation techniques (Shah et al., 2014). Some of these techniques can reduce symptoms of behavioral health conditions (Chiesa and Serretti, 2014; Khoury et al., 2013; Shah et al., 2014), although findings on the benefits for physical conditions are more mixed (Abbott et al., 2014; Fordham et al., 2013; Hughes et al., 2013; Lauche et al., 2013; Reiner et al., 2013). As with other behavioral health interventions, direct evidence of the efficacy of these stress reduction approaches specifically in young adults is limited, and studies have focused primarily on college students (Bodenlos et al., 2013; Tanis, 2012).

There are also approaches for reducing the development of depression in high-risk groups, such as adolescent children of parents with depression or adolescents with elevated depression symptoms (Beardslee et al., 2013; Clarke et al., 1995, 2001). One such approach has been adapted for Web-based intervention and has shown moderate effects in young adults (Clarke et al., 2009). In addition, pharmacological treatment combined with psychotherapy reduces the likelihood of suicide in individuals who have unipolar or bipolar affective disorders (Rihmer and Gonda, 2013). And since young adulthood is a common age for becoming a parent, preventing postpartum depression is particularly relevant in this age group. While cognitive-behavioral therapies reduce postpartum depression, evidence is currently insufficient regarding approaches for identifying those at risk and providing preventive interventions (Nardi et al., 2012).

Finally, because young adulthood is the peak age of onset of psychosis (Copeland et al., 2011), prevention of these most serious mental illnesses is a high priority. There is growing evidence that cognitive-behavioral therapies and complex psychotherapies can delay the transition from symptoms indicating high risk of developing psychosis to the development of a psychotic disorder, while pharmacotherapy does not appear to be beneficial for this purpose (Stafford et al., 2013). Both psychotherapies and pharma-

cotherapies can, however, help reduce the likelihood of a second episode of psychotic illness in those who have recently experienced a first episode (Álvarez-Jiménez et al., 2011).

BEHAVIORAL HEALTH INTERVENTIONS FOR YOUNG ADULTS

Effective behavioral health treatments and strategies exist for adults. The efficacy of these treatments specifically for young adults, however, is largely undemonstrated because they typically group young and other adults together (Davis et al., 2012a).

Pharmacological interventions are expected to be as efficacious in young as in older adults, although noncompliance may be greater in young adults (Baillargeon et al., 2000; Kessing et al., 2007). Psychosocial interventions, however, cannot be assumed to be as efficacious in young as in older adults, as they can be influenced by many of the factors that are changing or less mature in young compared with older adults. Such factors include responsibility taking, response to authoritative figures, changing roles within the family, and responses to behavioral contingencies. Indeed, young and older adults even perceive various qualities of their interaction with physicians differently (Bradley et al., 2001). Consequently, psychosocial interventions need to be explicitly tested in young adults. To this end, the young adult sample size needs to be large enough to detect an age effect compared with older or younger age groups (Davis et al., 2012a). Few published studies have compared age groups, although some have yielded significant findings comparing young and older adults with respect to outcomes or the effiacy of psychosocial interventions (e.g., Burke-Miller et al., 2012; Haddock et al., 2006; Kaplan et al., 2012; Rice et al., 1993; Sinha et al., 2003). With the exception of interventions to treat early psychosis, few interventions have been developed specifically for young adults; all are in early stages of development, and there are few for which efficacy has been demonstrated in this age group.

HEALTH CARE COVERAGE FOR YOUNG ADULTS

Young adults without health insurance or with gaps in insurance coverage are less likely to access health services compared with young adults who are continuously insured (see Figure 7-1). Health insurance coverage rates for young adults, however, have historically been the lowest of any age group. In 2010 and 2011, for example, young adults aged 19-25 had an uninsured rate of 28 percent and were the age group most likely to be uninsured (Todd and Sommers, 2012). The rate of uninsurance among empoyed young adults also is one-third higher than that among older

FIGURE 7-1 Percentage of young adults aged 19-29 who experienced different types of health care access problems in the past year because of cost (2010 data).
SOURCE: Collins et al., 2012.

employed adults because the part-time, entry-level, seasonal, and small-business jobs held more commonly by young versus older adults often do not include health benefits (CMS, 2014d).

In this section, we describe state-level efforts to enhance coverage for young adults and the impact of the ACA on this population. We also discuss several groups of young adults who have particular difficulty accessing care, including unauthorized immigrants, those exiting the foster care system, those involved in the justice system, and those with mental illness. The focus is primarily on financial barriers, but we identify additional barriers as well. It is important to keep in mind that access to adult care that fails to effectively engage and retain young adults or address their particular needs also is insufficient. A recent study showed that even though young adults’ coverage increased following en-

actment of the ACA, the impact on their health status and the care they received was limited (Kotogal et al., 2014), although their use of emergency departments for care does appear to have decreased (Hernandez-Boussard et al., 2014).

State-Level Efforts to Improve Young Adults’ Health Care Coverage

Prior to passage of the ACA, laws extending dependent coverage for young adults were passed in 37 states (Collins and Nicholson, 2010). These laws vary considerably in scope. For example, the age of dependency ranges from 23 in Oregon and Wyoming to 31 in New Jersey (Collins and Nicholson, 2010). Dependency criteria also vary by student, financial, and marital status, with some laws covering only young adults who are full-time students, financially dependent, living in the same state as their parents, or unmarried (Collins and Nicholson, 2010). In addition, under an option included in a 1999 federal law, 33 states took action to extend Medicaid coverage from age 18 to age 21 for youth exiting foster care (English et al., 2006; Lehmann et al., 2012).

The Patient Protection and Affordable Care Act

The ACA includes four principal pathways for increasing health insurance coverage for young adults—one specific to this age group (coverage under their parents’ employer-sponsored health plans) and the others shared with other age groups (health insurance for college students, Medicaid expansion, and insurance exchanges).

Providing for continued coverage for young adults is the intent of the ACA requirement that employer plans providing coverage for dependent children extend that coverage to young adults up to the age of 26. This employer mandate has had a notable impact on retention of young adults already covered by parental plans as well as new enrollment. The Health Insurance Tracking Survey of Young Adults found in 2013 that 19- to 25-year-olds on parental employer plans increased from 13.7 million to 15 million between November 2011 and March 2013, and that 7.8 million of these young adults who joined a parent’s plan would not have been eligible for coverage in the absence of the employer mandate (Collins et al., 2013). The survey also found notable increases (from 17 percent to 26 percent in 2013) among lower-income young adults, although this demographic group also is less likely to have parents with employer-sponsored health insurance (Collins et al., 2013).

The ACA addresses the high degree of variation in coverage and oversight of student health insurance by making these plans subject to the same protections as health insurance exchange plans. The act does not, however,

require guaranteed availability and guaranteed renewal because of the unique transient status of students (CMS, 2014b). As many as 3 million students may be covered under student health insurance plans at institutions of higher learning (CMS, 2014f).

Medicaid expansion and health insurance exchanges under the ACA are the major pathways for increasing coverage among lower-income young adults. Adults with incomes up to 133 percent of the federal poverty level (FPL) ($15,521 for an individual, $31,721 for a family of four for 2014) are now eligible for Medicaid or for coverage in new health insurance exchanges, with graded subsidies for incomes between 100 percent of the FPL ($11,670 for an individual, $23,850 for a family of four) and 400 percent of the FPL ($46,680 for an individual, $95,400 for a family of four) (FamiliesUSA, 2014). In 2013, 15.7 million 19- to 29-year-olds were uninsured for at least part of the prior year, and of these individuals, 82 percent had household incomes qualifying either for Medicaid under the ACA expansion or subsidized coverage in insurance exchanges (Collins et al., 2013). By the end of the first full ACA enrollment period in April 2014, there were 2.2 million young adults (aged 18-34) among the 8 million total enrollees in state-based or federally facilitated insurance exchanges (ASPE, 2014). Medicaid expansion in 27 states and the District of Columbia will increase the number of eligible insured young adults (KFF, 2014a).

Despite increases in young adult coverage under the ACA, young adult enrollment has been modest compared with the total estimated number of uninsured young adults. Moreover, it remains uncertain how many of the young adults newly enrolled in the exchanges will actually pay premiums to acquire, use, and sustain their coverage. Lack of awareness and knowledge of eligibility for subsidized insurance and concerns about affordability among young adults have been cited as major reasons for the slow uptake in this age group (Collins et al., 2013).

In addition, as of this writing, 21 states are not moving forward with Medicaid expansion, and 2 are in open debate on the issue (KFF, 2014a). An estimated 4.8 million adults who are uninsured, poor, and nonelderly could fall into the coverage gap in the states not expanding Medicaid, but it is not known how many of these individuals are young adults (KFF, 2014b). This failure to participate in Medicaid expansion will adversely impact the ability of lower-income young adults, particularly those of color, to obtain health insurance. These states provide much less Medicaid coverage than states adopting Medicaid expansion; for example, parents in a family of three have median eligibility limits of 46 percent and 138 percent of the FPL, respectively (KFF, 2014b). Nearly half of all nonelderly adults with family incomes below 138 percent of the FPL live in these states (KFF, 2014b).

Insurance exchanges at the state and federal levels are required to offer

a range of health plans that provide specific levels of coverage defined by the proportion of eligible expenses the plan will pay (actuarial value). These proportions range from 60 percent to 90 percent of eligible expenses—bronze, silver, gold, or platinum—with premiums rising accordingly. Premiums also are higher if the individual is a smoker, enrolls a family, or is over age 24 (GPO, 2013). Coverage of prevention services is mandatory (GPO, 2013), as is coverage for mental health, maternity, and newborn care and prescription medications—all especially relevant to young adults. Coverage of dental care is not required for adults, but may be offered as part of a health plan or as an independent policy. It has been estimated that the ACA could reduce dental uninsurance in all adults by approximately 5 percent, compared with about 55 percent in children younger than 19, for whom dental care is an essential health benefit (ADA, 2013).

Concern about affordability as an enrollment barrier for young adults, who generally are more financially constrained, healthier, and less likely to utilize health care services compared with older adults, prompted the addition of a fifth health plan category under the ACA. This “catastrophic coverage” entails low premiums, but very high deductibles that translate to little coverage until considerable out-of-pocket expenses have been incurred (CMS, 2014c). In the state of Connecticut, for example, a single young adult aged 27 earning $32,000 per year could purchase a catastrophic plan at $115.10 per month net of an ACA premium tax credit of $60.20 per month, and receive free preventive services and three free primary care visits. However, this plan requires that $6,350 of out-of-pocket expenses be incurred before any additional coverage is provided.⁹ “Catastrophic plans” were not a major contributor to increased young adult enrollment during the first enrollment period, with only 5 percent of 18- to 34-year-old young adult enrollees in federally facilitated exchanges selecting such a plan (ASPE, 2014).

Approximately 67 percent of young adult workers (aged 19-29) are enrolled in health insurance as a result of employer health benefits (Collins et al., 2013). Enrollment rates are higher among those aged 26-29 (79 percent) than those aged 19-25 (52 percent) (Collins et al., 2013). This differential may reflect the finding that up to half of 19- to 25-year-olds not enrolling in their employer plan are receiving coverage under their parental (34 percent) or spousal (19 percent) plan, while others may not be working enough hours to be eligible for employer benefits. Of those not enrolled in employer, parental, or spousal plans, most report unaffordability (22 percent) rather than lack of need (5 percent) as the principal reason for nonenrollment (Collins et al., 2013).

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⁹ Calculation performed on access health CT, the Connecticut health insurance exchange, using these parameters during the first ACA enrollment cycle for 2014 coverage.

Young Adults Who Have Difficulty Accessing or Maintaining Care

As noted above, certain groups of young adults—including those exiting the foster care system, those involved in the justice system, those with mental illness, and unauthorized immigrants—face particular difficulty accessing care. Chapter 8 provides a broader look at these groups and other marginalized young adults and examines programs and policies that can support their well-being.

Young Adults Exiting Foster Care

Young people in foster care have higher rates of serious health problems compared with the general population of adolescents and young adults (English et al., 2014). They are also disproportionately members of racial and ethnic minority groups (English et al., 2014). Higher rates of both physical and mental health issues are found among children and youth in foster care, including birth defects, developmental delays, emotional adjustment problems, chronic medical problems such as asthma, dental caries, and substance abuse (AAP, 2012; CMHS and CSAT, 2013; Halfon et al., 1995). And it is estimated that more than 30 percent of older adolescents in foster care have a disability or chronic illness (Rosenbach et al., 2001). A portion of their health concerns are directly related to the issues that led to their placement in foster care, such as physical or sexual abuse; other health concerns arise during placement (English et al., 2014).

In 2012, approximately 23,396 individuals left foster care by “emancipation,” or “aging out” (Children’s Bureau, 2013). Up until 2008, most individuals in foster care exited at 18, although the exit age was older in some states (English et al., 2014). Thus, many youth face an abrupt ending to social, educational, and health services, including Medicaid services, for which virtually all foster care children and adolescents are eligible (English et al., 2014). In 2008, the federal Fostering Connections to Success and Increasing Adoption Act (P.L. 110-351) was signed into law. This act offers federal payments for young adults aged 18 or older who meet certain requirements related to their placement and who are working toward independence through activities such as educational programs, certain programs related to obtaining employment, and employment (Children’s Bureau Training and Technical Assistance Network, 2008). Many foster youth transitioning into young adulthood face a variety of problems, including poor or absent family support; problems with employment and low income; problematic living arrangements; medical, dental, and mental health issues; and lack of health care coverage. Therefore, continuation of support has been noted as crucial to successful transitions (AAP, 2012).

The ACA is expected to lead to significant changes in access to health

care for these youth. Starting in 2014, the ACA requires states to provide Medicaid coverage up to the age of 26 for most individuals aging out of foster care. Still, health care coverage accessibility challenges will likely remain for the foster care population, given their need for help in the enrollment process and the need to identify appropriate providers in their community (English and Park, 2012). Barriers such as lack of transportation and low health literacy may pose challenges as well.

Young Adults Involved in the Justice System

In the United States, millions of young adults have some form of contact with the justice system, ranging from arrest without prosecution to detention or incarceration in an adult facility (as discussed in greater detail in Chapter 8). A variety of studies have documented increased health concerns, particularly mental health and substance abuse issues, for this population, as well as vast disparities in access to needed health care (English et al., 2014). Many of these young adults have long-standing preexisting physical and mental health problems. For example, approximately 65-70 percent of the adolescent juvenile justice system population has a mental health disorder, and more than 25 percent of these disorders are considered serious enough to require significant and immediate treatment (Shufelt and Cocozza, 2006). These and other health profile data do not apply only to young adults involved in the juvenile justice system; adults in the criminal justice system generally experience many of the same health problems.

Access to health care for young adults is determined by many different factors, both while they are in the justice system and afterward. These factors can include their socioeconomic circumstances, their geographic location, and the particular part of the justice system in which they are involved. Young adults involved in the justice system frequently are living in poverty or come from families with very low incomes. Prior to enactment of the ACA, many young adults were not eligible for Medicaid unless they were pregnant or disabled, and in most states the Medicaid eligibility income threshold for adults was extremely low (Heberlein et al., 2012). Moreover, Medicaid funds may not be used for services to “inmates of public institutions” (Zemel and Kaye, 2009). Health care for this population is provided at the state and local levels, and its quality varies significantly. Even among those who are living in nonsecure residential placements or on probation or parole, health insurance coverage under both Medicaid and private plans is uneven (English et al., 2014).

Future effects of the ACA on low-income young adults in the justice system will depend primarily on their state’s decision about whether to expand Medicaid. As discussed above, young adults who do not qualify for Medicaid because of higher incomes may have access to health insurance

through a parent’s employer-based policy until they turn 26 or through the health insurance exchanges. Agencies and facilities in the justice system can play a critical role in ensuring that young adults enroll in insurance coverage for which they are eligible, particularly as they exit the system (NACo, 2012; National Conference of State Legislatures, 2014). Some states have taken steps to facilitate this coordination. For example, legislation in Nevada allows the director of the Department of Corrections to apply for determination of Medicaid eligibility on a prisoner’s behalf.¹⁰ Having health insurance in place before exiting the system is key so that follow-up health care appointments can proceed immediately thereafter. Among other benefits, this can help prevent recidivism, particularly for those with mental health and substance abuse issues (English et al., 2014).

Young Adults with Behavioral Health Disorders

Utilization of behavioral health care is lower among young adults relative to children and older adults (Hower et al., 2013; Pottick et al., 2008, 2014; Ringeisen et al., 2009). Beginning in 2014, the implementation of Medicaid expansion and insurance exchanges under the ACA, in addition to the 2008 legislation mandating parity for behavioral health care discussed above, improvements in Medicaid disenrollment rates and more continuous and integrated behavioral and physical health care can be expected for young adults. Many states are establishing administrative processes intended to simplify health care plan enrollment (KFF, 2013; Koyanagi and Alfano, 2013). Examples of these processes include using a single application for both Medicaid and exchange plans and designing exchange plans specifically for youth under age 21. In addition, states can choose to make adults without children with incomes up to 133 percent of the FPL eligible for Medicaid, with a much higher match from the federal government than for other populations, and to make those who have been uninsured for more than 6 months potentially eligible for federally subsidized, high-risk state insurance plans that provide coverage for individuals with preexisting conditions (Koyanagi and Alfano, 2013).

The potential effectiveness of these reforms for young adults with substantial behavioral health issues is unknown. For example, the application process for health care coverage can be a barrier to treatment for young adults. Studies of Massachusetts’ health care reform have found that young adults enrolled in Medicaid and health care exchanges at higher rates

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¹⁰ Nevada S.B. 519. An Act relating to Medicaid; authorizing the Director of the Department of Corrections to apply on behalf of a prisoner for a determination of Medicaid eligibility; and providing other matters properly relating thereto.

(Gettens et al., 2011; Long et al., 2010), but those with behavioral health issues had lower enrollment rates (Capoccia et al., 2013).

Young adults also are much more likely than more mature adults to drop out of outpatient psychotherapy (Davis, 2013; Edlund et al., 2002). It is unclear to what extent the reasons for treatment dropout are similar and simply more prevalent in young than in older adults (e.g., insurance loss due to more frequent job change/loss), or the reasons are qualitatively different (e.g., related to peer influence in young adults but to spousal influence in mature adults). It is intriguing, however, that at least one study of a large-scale effort to tailor mental health care to the needs and characteristics of young people found much higher treatment enrollment rates in those settings than in standard adult settings (Gilmer et al., 2012).

Unauthorized Immigrants

An estimated 11-12 million unauthorized immigrants reside in the United States, representing about 17 percent (one in six) of all uninsured Americans (Gusmano, 2012; Passel et al., 2013). The age distribution of this population differs from the legal immigrant or U.S.-born population, with 18- to 39-year-old males making up 35 percent of unauthorized immigrants, compared with 18 percent of legal immigrants and 14 percent of the U.S.-born (Passel and Cohn, 2009). Overall, in 2008 unauthorized immigrants represented 4 percent of the population in the United States and 5.4 percent of the workforce (Passel and Cohn, 2009). The children of unauthorized immigrants may be unauthorized immigrants or U.S. citizens, and together they account for 6.8 percent of elementary and secondary school students (Passel and Cohn, 2009).

On average, this population has used subsidized medical care and other forms of public assistance less than legal immigrants and U.S.-born citizens (Wallace et al., 2013). Unauthorized immigrants represent approximately 13 percent of the uninsured; they remain ineligible for Medicaid and may not participate in the health exchanges or receive tax credits (KFF, 2014c). While there are important questions about whether and how this population and the communities in which they live would benefit from health insurance coverage, research suggests a positive relationship between extending coverage to all uninsured residents (regardless of legal status) and the more general health and well-being of everyone living in those communities (IOM, 2009; Pauly and Pagán, 2007).

The Obama Administration established the Deferred Action for Childhood Arrivals (DACA) program in 2012 (HHS, 2014a). Under this program, children who came to the United States without authorization before age 16 and were under age 31 as of June 15, 2012, may request relief from deportation for a period of 2 years, during which they are eligible for work

authorization (HHS, 2014a). Consideration of deferred action is available for individuals who “are currently in school, have graduated or obtained a certificate of completion from high school, have obtained a general education development (GED) certificate, or are an honorably discharged veteran of the Coast Guard or Armed Forces of the United States” and have no significant criminal record (HHS, 2014a). Approximately 1.7 million individuals nationally, primarily Hispanic youth (85 percent), were eligible for the DACA program when it started (Passel and Lopez, 2012). However, DACA recipients are specifically excluded from the ACA’s Medicaid expansion and health insurance exchanges (Brindis et al., 2014).

SYSTEMS ISSUES RELATED TO YOUNG ADULTS

While young adults have lower health care utilization than other age groups, this is not necessarily because they have less need for health care. In this section, we examine how several issues raised earlier can be adddressed to improve the health care system for young adults and help ensure that they enter and remain in the system to receive the care they need. Specifically, we consider the health care workforce providing care to young adults, confidentiality concerns, the need for better integration of behavioral and medical health care, and innovative approaches to care delivery that may better address young adults’ needs and preferences. The section ends with proposed frameworks for young adult health care.

The Health Care Workforce

As noted earlier in the discussion of transitions, health care providers require both biomedical and psychosocial knowledge and training to provide high-quality care to young adults. Some adolescent-focused medical boards, professional associations, and researchers have started to include young adults within their population of interest, although their primary focus remains on adolescence. Yet little attention has been given to the skills and training needed by both pediatric health care professionals and systems that provide adult health care to provide high-quality care to young adults; most youth with special health care needs are still with their pediatrician at age 18 (the lower end of the age definition for young adults for this report). The limited research in this area is focused primarily on care for young adults with special health care needs.

Over the past 50 years, the need to train a health care workforce to work with adolescents has increasingly been recognized, although important gaps and inadequacies remain (see, for example, Emans et al., 2010; Fox et al., 2010; Hergenroeder et al., 2010; NRC and IOM, 2009). Postgraduate fellowship training in adolescent medicine is available for those

TABLE 7-6 Inclusion of Young Adults in Training Programs and Materials

who have completed accredited residency training in pediatrics, family medicine, or internal medicine. After the fellowship, candidates take an exam to be certified with a subspecialty in adolescent medicine. Among formal training programs and materials in medicine, public health, social work, and behavioral health, there is no comparable recognition of the uniqueness of young adulthood. Similarly, for example, the National Association of Social Workers has published standards for the practice of social work with adolescents (NASW, 1993).

Some adolescent-focused professional associations and training programs have begun to incorporate a greater focus on young adults. For example, the Society for Adolescent Health and Medicine includes both

adolescents and young adults within its vision statement (SAHM, 2014). And its Journal of Adolescent Health also has recently recognized the importance of young adults by changing its tagline to “Improving the Lives of Adolescents and Young Adults.” As noted throughout this report, however, it is important to keep in mind that young adults have needs distinct from those of both adolescents and older adults and often are cared for by different health care providers from those who care for adolescents; therefore, the workforce training needs also are distinct. Table 7-6 provides

examples of training programs and materials in medicine, public health, social work, and addiction counseling, along with information about how young adults are explicitly mentioned, if at all. It is important to note that training specific to young adults also is lacking in other areas relevant to young adults’ health. For example, few adult correctional settings provide staff members with training in the mental health needs of this age group (Fagan and Zimring, 2000). Of interest as well is the Young Adult Specialist Model developed by the Kaiser Permanente Group in Northern California, described in Box 7-4.

Resources and training materials for young adult health care are limited. Various curriculums and training materials are available that address adolescents and young adults together (EuTEACH, 2014; Neinstein, 2014; Partnership for Male Youth, 2014). However, reflecting the availability of material, the majority of videos, case studies, and cited references focus more on adolescents than on young adults. The National Adolescent and Young Adult Health Information Center has collected clinical preventive screening guidelines for young adults aged 18-26, extracting recommendations from the USPSTF, Bright Futures, and ACOG (NAHIC, 2014).

Confidentiality Concerns

While much has been written about the need for confidential care among adolescents, less attention has been paid to that need among young adults, even though they similarly seek and use sensitive services, such as

those related to sexual health, substance use, and mental health. Research has documented that adolescents will forego medical care if confidentiality is not ensured (NRC and IOM, 2009); serious consequences, such as unprotected sex, unintended pregnancy, untreated STIs, and mental health issues, can result (Ford et al., 2004; Lehrer et al., 2007; Slive and Cramer, 2012). This is particularly true for those adolescents most at risk. As more young adults are insured through the ACA, many more are expected to seek and receive services that entail senstive issues (Tebb et al., 2014), such as discussion of sexual behavior and provision of contraception; screening and treatment for STIs; and screening, counseling, and treatment related to mental health or substance use disorders.

At the same time, a number of important changes are occurring in how patient health care data are collected, stored, accessed, and shared. While these changes hold promise for improving care and keeping consumers better informed, they may result in breaches of confidentiality for both adolescents and young adults covered through their parents’ plans (Tebb et al., 2014). The general rule of the Health Insurance Portability and Accountability Act (HIPAA) is that individually identifiable health information cannot be released by a health care provider or insurer without written authorization if the patient is 18 or older. Yet a number of exceptions allow or require a provider or insurer to release individually identifiable health information without written authorization, giving insurance companies the discretion to share otherwise protected information with an insurance holder if the disclosure is for billing and payment purposes. Thus even though a parent/insurance holder does not have a right to demand full access to protected information, the insurer can provide that individual with information related to billing and payment (termed Explanation of Benefits [EOB]). The objective is to reduce insurance fraud and abuse by informing policy holders of insurance claims made and actions taken on their account by anyone covered under their policy (including dependents) (Tebb et al., 2014). There is no legal mandate to send this information; however, claims reflecting services received in a doctor’s office that are denied because they may not be part of the insurance benefits package need to be reported to the policy holder (Tebb et al., 2014). Thus, there is inherent tension between the importance of confidentiality and the need for policy holders to be informed about the costs of health care services and benefits under their health plan. This issue is less of a problem for individuals enrolled in Medicaid, because most state Medicaid programs do not send EOB information at all or withhold it for sensitive services (although policy holders must be notified when claims are denied) (Tebb et al., 2014).

The HIPAA regulations do give individuals the right to request that their insurers send such communications by alternative means or to an alternative location rather than by mail to the home address. However,

insurers need accept such a request only if it “clearly states” that disclosing the information involved might “endanger the individual.” Confidential conversations with several insurance companies suggest they receive very few such requests each year (Gudeman, 2013).

Creative solutions to this issue are emerging. In Massachusetts, New York, and Wisconsin, for example, plans are not required to send an EOB when no additional payment is required for services (Tebb et al., 2014). This might happen if an adolescent or young adult receiving services paid the co-pay or if a service were one of the preventive services for which co-pays cannot be imposed under the ACA. Some health care systems also are designing systems to protect confidentiality in multiple areas, such as the making of appointments, lab and pharmacy procedures, and electronic medical records and billing. The state of California passed the Confidential Health Information Act (SB138), scheduled to take effect in January 2015, which will enable patients to request that EOB information be sent to the beneficiary (in this case, the young adult) rather than the policy holder (Gudeman, 2013; Tebb et al., 2014).

Confidentiality issues will be different for young adults with intellectual disabilities, for whom guardianship and decision-making support may be appropriate. The Got Transition initiative has developed an overview of options for guardianship and alternative options for decision-making support (Center for Health Care Transition Improvement, 2012). In addition, special concerns have been raised regarding situations in which parents or other family members are serving caregiving roles for young adults with mental illness, leading to efforts to allow providers to make disclosures when necessary to prevent clinical deteroriation or harm to the patient or others.¹¹

Better Integration of Behavioral and Medical Health Care

Emphasis is increasing on integrating the medical and behavioral health care systems. The ACA endorses collocated, collaborative care.

There is no one model of integrated care. Rather, there are three basic dimensions that vary in different models: collocation, integration, and collaboration (Blount, 2003; Perrin and Sheldrick, 2012). Collocation refers to physicians and mental health clinicians sharing space and having at least somewhat overlapping hours. Integrated practice includes sharing medical records; going to the same meetings; sharing office staff for scheduling and billing; sharing medical charts, referrals, and scheduling; and the like. Collaborative practices incorporate more purposeful strategies for ensuring coordinated care, including shared decision making across practices, shared

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¹¹ For example, Rhode Island Code § 40.1-5-27.1.

care of the same patients, and a single plan of treatment that incorporates both physical and behavioral health. Collocation is not required for integration and collaboration to occur. Integrated care can emphasize physical health care while linking patients to behavioral health care, or emphasize behavioral health care while linking patients to physical health care.

Given the health profile of young adults as described in Chapter 2, integrated behavioral and physical health care would be particularly beneficial to this age group. Having easy access to behavioral health services through primary care settings could increase early use of such services (i.e., before symptoms worsen) among a population in which, as discussed above, utilization of these services is low relative to other age groups. Moreover, one study found that about half of individuals with common behavioral health conditions were seen exclusively in primary care settings (Regier et al., 1993). Thus, better integration of services also could improve general medical practitioners’ treatment of common behavioral health conditions. And because going to a primary care setting is less stigmatizing than going to a behavioral health clinic (Bower, 2002; Bower et al., 2001; Kramer and Garralda, 2000), a primary care clinic with integrated behavioral health services could decrease dropping out of behavioral health treatment among young adults. Thus, access to primary care that offers prevention or early intervention for behavioral health problems could help reduce early mortality in young adults and prevent future conditions.

However, no studies have examined access to care or care outcomes for integrated care in young adults. In general, evidence indicates that collaborative care models based in primary care targeting depressive and anxiety disorders are more effective than usual care in reducing symptoms in adults (Archer et al., 2012). These models have demonstrated improved employment rates, functioning, and quality of life, as well as cost-effectiveness (Schoenbaum et al., 2001, 2002, 2004; Simon et al., 2001, 2002). Far less research has been conducted on other mental health disorders. Evidence on the benefit of connecting individuals receiving behavioral health care to physical health care interventions also is less clearly established, although randomized controlled trials have found some benefit (van Hasselt et al., 2013). Thus, while integrated care holds promise for better behavioral health care delivery and early intervention with physical health conditions that contribute to early mortality, research is needed to test this promise.

Innovative Approaches to Care Delivery

There is burgeoning interest in how to get young adults to come “in the door” and then stay engaged in the system. Unfortunately, little research has examined how young adults prefer to access and interact with the health system, limiting health care systems’ ability to improve the system design

for young adults. As noted above, for example, young adults receive care in emergency departments at higher rates than those immediately younger and older than them. However, it is unclear whether this is related to payment issues, a lack of knowledge about how to access care in other settings, or certain features of the emergency department that make it a more attractive place for young adults to seek care. Further research could investigate which features of emergency departments and/or urgent care are appealing to young adults so that these features could be incorporated into other care settings.

One potential idea is to provide care to young parents and their children together. This could be accomplished through programs that focus explicitly on two generations together (see Glied and Oellerich, 2014). Or, for example, when young adult parents take their children in for preventive/well-child visits, there could be an opportunity to provide them with information on adult preventive/wellness services that may apply to them. In the U.S. health care system, however, structural barriers impede the development of such two-generation approaches to health. Glied and Oellerich (2014) identify as the primary barrier that most physicians specialize in treating children or adults and are not used to providing care to a whole family. Other barriers include financing constraints related to health insurance, access to care, and benefits.

Below we briefly describe research on technology-based and peer-led approaches to health care for young adults.

Harnessing Technology for Young Adult Health Care

The emerging field of “mHealth” focuses on innovative approaches to using social media and mobile technology for public health and health care delivery (see, for example, the annual mHealth Summit [2014], the mHealth Alliance [2014], the U.S. Department of Health and Human Services’ [HHS’s] mHealth initiatives [HHS, 2014b], and Jones et al. [2014]). While there is little evidence on the question of whether these approaches are effective generally, let alone for young adults, they appear to hold promise for this population, who, as discussed earlier in this report, are heavy users of these media. Therefore, further research in this area is warranted.

The limited research on harnessing technology to enhance the care provided to young adults suggests that caution and careful design are needed. Although young adults are heavy users of social and mobile media and the Internet, including to search for and receive health-related information, research suggests that they generally prefer face-to-face interaction with health care providers over interaction via telephone, webcam, email, or text message (Garrett et al., 2011; Labacher and Mitchell, 2013; Lindstrom Johnson et al., 2012). To explain this preference, young adults cite confidentiality concerns, and in one study, many participants said they thought they would receive more individualized and credible information during face-to-face interaction (Lindstrom Johnson et al., 2012). Young adults’ preferences are not homogenous: Cunningham and colleagues (2014) examined young adults’ preferences for how to receive information about anxiety and depression and found that they fell into three groups, one of which preferred working independently on the Internet to obtain this information.

It is important to recognize that the research described in the preceding paragraph has limitations with respect to determining the preferences of young adults in the United States. First, most of this research focuses on young adults with chronic health conditions, and their preferences and needs may not be applicable to all young adults. Second, there is little research to enable the exploration of commonalities and differences across subgroups of young adults. Third, some of the research in this area comes from Canada, European countries, and Australia, and cross-cultural differences may be relevant. In addition, the care delivery system in these countries is very different from that in the United States.

Research is needed in this area to address several key questions. First, would enhancing confidentiality/security policies and assurances increase young adults’ preferences for using technology for health care purposes? Second, would technology be particularly helpful for young adults who would otherwise lack access to services, such as those who are geographically remote from providers or otherwise unable to access care? Third, would offering technology approaches as an option work well for

certain subgroups of young adults? Fourth, how can technology be integrated to supplement face-to-face interactions?

The Quantified Self

A growing body of research on preventive health care, self-diagnosis, self-monitoring of health-related behaviors, and health awareness examines how technology can be used to track, store, and analyze data on an individual’s daily behaviors (Fox and Duggan, 2013). This research and the technologies that support it can be loosely summarized by the term “the quantified self.” This form of self-tracking is enhanced by wearable devices and by networked platforms that facilitate the collection and sharing of data, and is also referred to as “lifestreaming,” “lifelogging,” “lifehacking,” “self-quantifying,” or “personal informatics” (Marwick, 2013). The idea is to monitor one’s behaviors so as to improve both behavioral and physical health.

The sociotechnical environments and devices that support the quantified self may be described as “human augmentics.” The term describes technologies that are designed to assist sensory, cognitive, and physical systems in evolving beyond their limits (Kenyon and Leigh, 2011). Human augmentics include devices that connect and sustain the human augmentics ecosystem, such as displays, robots, sensors (wearable and not), and a variety of cognitive amplifiers (Kenyon and Leigh, 2011). They also include compensatory devices for both healthy and disabled populations, such as a variety of prostheses and brain-machine interfaces. At this time, however, there are no studies indicating whether young adults as a group are relying on such technology and how and under what circumstances they are using such devices and with what outcomes.

Peer-Led Approaches

Given the vital role of peer influence in the lives of young adults, peer-led approaches to health care are intuitively appealing. Although such approaches are offered with increasing frequency, however, research is limited on their efficacy among adults in general, and even more so among young adults. In a systematic review, Lloyd-Evans and colleagues (2014) found that the existing body of research on peer-led approaches among adults with severe mental health conditions is weak, with inconsistencies in both methods and reporting. Peer-led approaches appear to be as effective as, but no better than, usual behavioral health services provided to adults (Lloyd-Evans et al., 2014).

Another evidence-based health care approach that utilizes peer support is the chronic disease self-management model for adults (Lorig et al., 2009).

This model has been extended to address the health status of adults with serious mental illness, with promising results (Druss et al., 2010).

In the past, a lack of funding has served as a barrier to offering peer-led health services. However, many states now reimburse peer specialists under Medicaid (Kaufman et al., 2012). Because of the importance of peer influence among young adults, developing and rigorously testing well-specified peer-led interventions is an important area for future research.

Characteristics of High-Quality Health Care for Young Adults

In Box 7-5, we draw on two frameworks developed by the World Health Organization (WHO, 2001, 2009) and the IOM (2001) to identify the characteristics of high-quality care for young adults. The WHO framework, originally developed for adolescent-friendly services, is adapted here to the needs of young adults. Of course, the health care system could be improved for all adults. Nevertheless, focusing on improving the system for young adults is important because their access to and utilization of the health care system will be carried forward throughout their lives.

CONCLUSIONS AND RECOMMENDATIONS

From among the many topics discussed in this chapter, the committee selected three areas in which action would make a particular difference for young adults: improving the transition process from pediatric to adult health care, improving preventive care, and developing evidence-based practices. Health insurance coverage for young adults also is very important but, as the discussion above makes clear, extensive action is already occurring in this area. Improving behavioral and medical health care for young adults would improve their health, safety, and well-being, as well as their educational and employment outcomes. Young adults with chronic health conditions, including mental health and substance use disorders, often have lower educational attainment and less successful employment experiences and outcomes, as described in Chapter 4.

Improving the Transition Process

The transition from pediatric to adult health care—including both medical and behavioral health care—is associated with poor outcomes for young adults. Structural barriers, such as funding streams and eligibility requirements, as well as age limits set by health systems, impose artificial boundaries between the two systems. These barriers negatively impact the transition process by creating discontinuities in care and associated poor outcomes. Other challenges arise because of adult health care providers’

lack of familiarity with disease processes and developmental issues among young adults.

Transitions of care have long been identified as an important problem in health care, as described in the IOM report To Err Is Human: Building a Safer Health System (IOM, 2000). As reported more recently,

The ACA includes several provisions that impose penalties for poorly managed care transitions and offer financial incentives for improving transition care (Burton, 2012). Examples of these provisions include reduced payments for readmission rates that exceed particular targets and payment for transition care services in medical homes. State Medicaid agencies also can provide reimbursement for transition care that occurs in “health home” practices, which provide physical, behavioral, and long-term care services.

This recent movement has an associated focus on developing measures for and improving care transitions/handoffs. The transition to adult care is included in the National Committee for Quality Assurance’s (NCQA’s) 2014 Standards and Guidelines for NCQA’s Patient-Centered Medical Home (NCQA, 2014). Transition of care for youth with special health care needs also is included as a Healthy People 2020 indicator (HHS, 2014c). With these exceptions, however, the focus on measuring transitions generally has not included the transition between pediatric and adult systems. For example, the following transitions are considered by the National Transitions of Care Coalition Measures Working Group:

• “Within settings; e.g., primary care to specialty care, or intensive care unit (ICU) to ward.
• Between settings; e.g., hospital to sub-acute care, or ambulatory clinic to senior center.
• Across health states; e.g., curative care to palliative care or hospice, or personal residence to assisted living.
• Between providers; e.g., generalist to a specialist practitioner, or acute care provider to a palliative care specialist.” (NTOCC, 2008, p. 1)

Rather than developing a separate approach for improving the transition to adult health care, we propose drawing attention to this transition

and incorporating it in the current movement to improve transitions generally. Thus we propose that health care delivery systems develop a process for the transition from pediatric to adult care. The recommendations developed by AAP, AAFP, and ACP (AAP et al., 2011; see also Box 7-3) and the six core elements developed by the Got Transition initiative provide an appropriate guide for the develoment of this process, although additional research and evaluation are needed to support these recommendations. We also propose that health care delivery systems include metrics on this transition among their quality performance metrics. Since metrics for this transition do not yet exist, we suggest that AHRQ develop them.

Recommendation 7-1: Health care delivery systems and provider organizations serving young adults (e.g., medical homes, accountable care organizations)—with input from the Agency for Healthcare Research and Quality (AHRQ) and the Centers for Medicare & Medicaid Services (CMS)—should improve the transition process for young adults moving from pediatric to adult medical and behavioral health care.

To implement this recommendation, the committee recommends the following specific actions:

• AHRQ should develop quality performance metrics on the transition-of-care process to ensure continuity of care for young adults making this transition.
• CMS should encourage greater attention to this transition within the innovation models that it solicits and funds, such as those from the Center for Medicare & Medicaid Innovation.
• Health care delivery systems and provider organizations serving young adults should develop a coordinated pediatric-to-adult transition-of-care process within their organizations.
• Pediatric-to-adult transition-of-care performance metrics should be incorporated into quality measurement and reporting frameworks by the National Committee for Quality Assurance, the National Quality Forum, and other quality measurement entities for all health care delivery models serving young adults, such as medical homes, accountable care organizations, and integrated delivery systems.
• The Office of the National Coordinator for Health Information Technology should ensure that meaningful use criteria enable the capture of relevant data elements for this reporting.
• CMS, health insurers, and purchasing entities such as employer coalitions should incorporate young adult transition-of-care met-

• rics into pay-for-performance initiatives, contracting, and other provider assessments.

• The Maternal and Child Health Bureau in the HRSA should expand its work on transition-of-care metrics for youth with special health care needs to include all youth and young adults, incorporate such metrics in Title V program requirements, and support related capacity development and training in states.

Careful design of these metrics is important so as not to generate perverse incentives for health systems to exclude young adults with special health care needs. Comprehensive coordinated health care delivery systems should give substantial weight to performance metrics for such patients to help ensure that they meet performance requirements by applying better practices to populations similar to those they have served in the past rather than by excluding more unhealthy patients.

The transition from pediatric to adult health care is a lengthier process than some of the other health care transition processes, such as transfers from primary to intensive care. When done well, the transition to adult health care begins several years prior to the actual transfer time and includes patient education and engagement. However, many of the issues related to discontinuities for this transition are analogous to those entailed in other types of transitions. Placing greater emphasis on this transition by including it in transition metrics is likely to have benefits for other aspects of the transition process from pediatric to adult care as well.

Improving Preventive Care for Young Adults

As described in Chapters 2 and 6, young adults are less healthy than commonly perceived, the majority of the health problems they face are preventable, and the health habits developed during these years have lifelong implications. Knowledge about the use and delivery of preventive services for young adults is limited, but the available evidence suggests that young adults receive little preventive care. As discussed earlier, for example, during visits with physicians, including primary care and obstetrics-gynecology providers, most young adults receive no preventive counseling on such critical issues for this age group as injury, smoking, exercise, weight reduction, mental health, and STIs/HIV. Various sets of recommendations (e.g., from USPSTF, ACOG, and Bright Futures) can inform the care of young adults aged 18-26, but there is no consolidated set of guidelines for preventive medical, behavioral, and oral health care specifically focused on the young adult population. Furthermore, the efficacy of these guidelines for young adults is unclear because the age ranges are broad, and young adults are grouped with adults overall. Because young adults’ burden of

disease is different from that of older adults and because other issues, such as fertility, may be of greater concern for this age group, it is important to have evidence-based recommendations assessed specifically for efficacy with young adults.

In addition to recommendations for adults in general, USPSTF provides a special focus on children and adolescents and older adults (USPSTF, 2011, 2013), and convenes workgroups and makes evidence-based recommendations specifically for these populations. USPSTF is the preferred body to develop a consolidated package of evidence-based recommendations for young adults because its existing model could be extended to provide a special focus on the health problems that most affect young adults.

Recommendation 7-2: The U.S. Preventive Services Task Force should develop a consolidated set of standardized evidence-based recommendations for clinical preventive services such as screenings, counseling services, and preventive medications specifically for young adults aged 18-26. Behavioral and oral health should be included in these recommendations.

Once these recommendations have been developed, they will need to be implemented. Federal, state, and local governmental entities that fund or provide physical or behavioral health services—including the U.S. Department of Defense, HHS (through AHRQ, CMS, HRSA, the Indian Health Service, and SAMHSA), the U.S. Department of Veterans Affairs, and corresponding state and local agencies—in partnership with commercial insurers and employer-sponsored health plans, should be involved in improving preventive care for young adults, including increased access to care and content of care that emphasizes preventive visits as part of an array of integrated, comprehensive services.

Recommendation 7-3: Federal, state, and local governments, commercial insurers, employer-sponsored health plans, and medical and behavioral health systems should adopt the clinical preventive services recommended by the U.S. Preventive Services Task Force, include the delivery of those services in quality performance metrics used for pay-for-performance and other health care provider assessments, and require public reporting of compliance.

To improve preventive care for young adults, it will be critically important to drive provider interest in engaging young adults in receiving preventive care, as well as monitor the delivery of these services. Given the broad variety of entities—both governmental and private—involved in providing

preventive care to young adults, we do not recommend specific approaches to driving provider interest and ensuring appropriate monitoring. Rather, we focus on outcomes that should be measured and leave it to organizations to develop their own processes and implementation approaches.

Developing Evidence-Based Practices for Young Adults

Most prevention approaches are targeted at children and adolescents, and some are targeted at college students. With the exception of interventions for treating early psychosis, there are few behavioral health interventions developed specifically for young adults, all of which are in early stages of development, and few interventions with demonstrated efficacy specifically in this age group. Although pharmacological treatments should be as effective in young adults as in older adults, psychosocial treatments and interventions need to be explicitly tested in this age group. Because of the psychosocial nature of nonpharmacological interventions, including preventive interventions, psychotherapy, and other related approaches, such interventions can be influenced by many of the factors that are changing or less mature in young compared with older adults, such as responsibility taking, response to authoritative figures, changing roles within the family, and responses to behavioral contingencies.

Recommendation 7-4: The National Institutes of Health should support research aimed at developing a set of evidence-based practices for medical and behavioral health care, including prevention, for young adults. This research should build on the existing and established evidence-based practices (EBPs) for populations that are older (i.e., adults in general) or younger (i.e., adolescents) to

• identify those EBPs that hold promise for being effective in this age group and test them for efficacy;
• identify EBPs that are likely to be effective with modification for this age group and test the efficacy of the modified versions; and
• identify behavioral and medical health care needs that are unlikely to be addressed by existing or modified EBPs and conduct research to develop and establish new EBPs for young adults in these areas.

In developing methodologies for implementing this recommendation, it will be important to take into account socioeconomic position and racial, ethnic, and geographic disparities and differences, as well as differences according to immigrant and refugee status, across the full spectrum of the social, behavioral, and health indicators under discussion.

Research Priorities

As described throughout this chapter, further research is needed to help improve medical and behavioral health care for young adults. We identified four research needs of particular importance:

• Develop preventive care guidelines for young adults (see Recommendation 7-2).
• Develop a set of evidence-based practices for young adults for medical and behavioral health care encompassing prevention and effective processes for the transition from pediatric to adult care (see Recommendations 7-1, 7-2, 7-3, and 7-4).
• Examine the efficacy of integrating behavioral and physical health care for improving health outcomes for young adults.
• Develop a comprehensive behavioral health screen. (Note that other efforts also are needed to ensure that treatment can be offered if concerns are identified during screening.)

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