Challenges in Adolescent Health Care: Workshop Report (2007)

Despite the many challenges of providing quality health care to vulnerable adolescents, many organizations have found ways to address their needs in diverse settings. The committee invited a variety of providers to share their perspectives on gaps in care and strategies for bridging them as a way of illuminating these issues and pointing to areas in which more evidence would be valuable.

Offering the perspective of a nongovernmental entity, Kristin Adams of Girls, Inc., spoke about the ways in which this national group serves a population of largely low-income, minority females. Girls, Inc., is an umbrella for more than 100 member organizations, each of which is its own nonprofit entity, serving communities throughout the United States and Canada. The group’s mission is to inspire and empower all adolescent girls to “understand, value, and assert their rights.” The organization reports that it served 800,000 girls in 2004 through its programs, website, and publications (available: http://www.girlsinc.org/ic/page.php?id=7, accessed July 22, 2007).

Adams enumerated some of the key health issues that affect the girls they serve: pregnancy prevention, sexually transmitted diseases, and reproductive health care; abuse, neglect, and violence; and substance use and abuse. Issues related to body image—anorexia and bulimia—and stress, affecting girls as young as eight or nine, are also of particular concern for clinicians who work with adolescent girls and young women.

Looking at the system for providing care through the lens of adolescent girls and young women’s needs, familiar issues arise. Lack of insurance or inability to afford available insurance or care; language barriers; transportation; and parental support all affect the young people served by Girls, Inc. Confidentiality can also be a particular concern for adolescent girls and young women when they need reproductive health care. For all these reasons, health education is a prime concern for the organization, although it does not provide health services. Adams noted that neither health education nor physical education is included in the requirements of the No Child Left Behind legislation, and as a result both are being significantly cut back in many jurisdictions. Girls, Inc., has begun advocating for the inclusion of these programs when the legislation is reauthorized and also focuses on programs that provide these opportunities outside school.

The role of parents is a key issue. Adams noted that often parents of vulnerable adolescents lack information about health and health care. Those who are not experienced at advocating for themselves or their children have not been able to teach their children to advocate for themselves. To address this problem, Girls, Inc., has developed the concept of the health bridge for adolescent girls and young women—a means of both linking them to the health services they need and teaching them to advocate for themselves. On a very practical level, Girls, Inc., staff work with adolescents as they practice looking through the telephone book to find a practitioner, calling for an appointment, and visiting a clinic before becoming a patient to assess the environment and establish a comfort level.

At the same time, Girls, Inc., works at the community level to educate providers about the perspectives adolescents bring and to identify ways they can do more to reach adolescents and provide them with what they need. Girls, Inc., has organized adolescent forums to spread their messages among adolescent girls and young women, parents, and community leaders, as well as parent-daughter workshops to provide education about health issues, health fairs, and other activities designed to reach as many people as possible.

Several distinct challenges face providers who work with adolescents in rural areas, as Kathaleen Perkins, a physician from West Virginia University, explained. While rural adolescents experience many of the same problems as young people in other settings—such as poverty; high rates of teen pregnancy, substance abuse, and violence; and mental health problems—their situation poses some unique challenges, as well as some twists on the problems already described. These challenges also complicate the efforts of the caregivers who work with rural adolescents.

For example, with regard to teen pregnancy, Perkins noted that in the Appalachian region, as elsewhere, rates are declining, but that pregnancy rates are increasing among the youngest adolescents. With regard to drug use, she noted that crystal methamphetamine has become a very significant problem, in many cases affecting entire families. This situation is exacerbated by an increasing problem with criminals who travel from urban areas to West Virginia, where legal restrictions are minimal, and purchase guns with drugs.

West Virginia is also one of three states with the highest rates of obesity; two-thirds of its population has a body mass index over 30, and 50 percent of fifth graders are overweight, according to a recent study (Neal et al., 2001). It is not uncommon for Perkins to see adolescents weighing between 300 and 600 pounds in her own practice. The state, as well as all 55 counties, has tackled this problem with a variety of interventions at both the school and family levels, from employee and school fitness programs to meal planning programs to individual counseling.

Another tough challenge is that of access—long distances and dispersed populations are a practical obstacle to improving access to crucial services for every adolescent. Rural health centers, funded jointly by the state and the federal government, provide a significant portion of care for West Virginia adolescents. Collectively and working in partnership with communities, they see 13,000 medical patients of all ages each month and an additional 4,720 dental patients. School-based health services are another important resource for adolescents, although not all schools offer them.

Finding and retaining adequate staff to serve this large geographical area has been a big problem for the state. Educating, recruiting, training, and retaining caregivers to serve the rural areas of the state have become priorities for policy makers. Perkins identified key strategies to address the problem, including the use of rural rotations for medical students as well as clinicians, integration of curriculum in training programs, and close relationships between universities and care providers. Technology has also provided some valuable tools for bridging these gaps in care— telemedicine (Mountaineer Doctor Telemedicine) has allowed providers

to gain access to university lectures on neurology and adolescent medicine, for example, while video conferencing facilitates consultations with specialists (currently this technology is used for psychiatry).

The director of the adolescent health center and counseling services at The Door, a multiservice youth development agency in New York City, Rhonda Braxton, turned the focus to the challenges of providing adolescent care in an urban setting. The Door provides comprehensive care, including health care, dental, counseling, education, and legal and career development services, free of charge, to adolescents between ages 12 and 21. It also has a laboratory and medical dispensary on site so it can provide medications and birth control and provide test results mostly free of charge.

The needs of the more than 4,000 clients seen at The Door in a year are great. Predominantly female and black or Hispanic, they seek the services that vulnerable adolescents need in many settings—such as primary and reproductive health care, HIV counseling and testing, dental services, and mental health services. These adolescents have low income and often have trouble affording and navigating the health care system. Like many adolescents, they may have issues related to parental consent (required in New York state for general physical and dental care but not for reproductive care), may be misinformed about health issues, and may be anxious or embarrassed when they seek treatment.

From the perspective of providers at The Door, the major challenges are maintaining full funding, ensuring continuity of care, obtaining required parental consent, and gaining patient compliance with recommended treatments and follow-up care. Because adolescents’ priorities are different from those of the adults who work with them, patience and effort are required to get them to take crucial steps for their own well-being.

The key to success at The Door, Braxton explained, is its internal capacity to coordinate services. A practitioner can literally walk a patient down the hall for mental health counseling, for example, or introduce him or her to a counselor who can help the patient apply for Medicaid family planning benefits. Moreover, The Door has developed relationships with community partners so that if it is unable to meet an HIV-positive patient’s complex medical needs, for example, it can oversee the transfer of care for that patient to another facility. The Door also has a school- and community-based outreach program through which it provides health education to some 10,000 students every year, as well as more than 500 parents.

Several practical strategies have been important to success. Open

access appointment scheduling, which allows adolescents to be seen within 48 hours of making a request, has reduced their no-show rate from 50 to 20 percent. Peer education programs include young people who work with adolescents who come into the center, as well as young adults who offer education in schools and community organizations. Finally, the staff has made cultural sensitivity a priority, so that adolescents will feel welcome there regardless of sexual orientation or other issues, and they have also worked to protect the adolescent’s privacy. A fish symbol is displayed prominently at the center so that cards bearing just the symbol can be sent to young people at home as a discreet signal to get in touch with the center.

Reaching adolescents through schools is a logical way to circumvent some of the obstacles that impede their care. In 2005 in the United States there were 1,725 school-based health centers—partnerships among schools and community health organizations that provide medical and some mental and dental health services to school-age children and adolescents in the schools—according to Linda Juszczak (National Assembly on School-Based Health Care). Those centers, 80 percent of which serve adolescents, provided approximately 1.7 million students with physical examinations, immunizations, lab testing, medications, dental care, and health education, among other services.

And 71 percent of the centers also provided mental health services. They may target issues that are common for adolescents by providing counseling for pregnancy prevention, testing for pregnancy and sexually transmitted diseases, substance abuse counseling, and nutrition and weight loss counseling.

Juszczak drew on several sources of current data, as well as her own experience, to describe some of the benefits and challenges to delivering care through the schools.² The school location makes it much easier to reach some of the adolescents who are least accessible to providers, such

as young men, the uninsured, and those who are reluctant or embarrassed to seek care. In particular, adolescents are more likely to seek mental health care in a school-based center than elsewhere. Both parents and students have reported strong support for these centers. Moreover, when center-based care is available, adolescents make less use of urgent and emergency care, which can reduce costs to Medicaid (Adams and Johnson, 2000; Kaplan et al., 1998, 1999; Key, Washington, and Hulsey, 2002; Webber et al., 2003). At the same time, the incidence of risk behaviors among students served by a school-based center decreases, and health-promoting behaviors increase. This is best documented when school-based health centers put interventions in place with the goal of changing specific behaviors. Risk behaviors related to adolescent sexual activity, pregnancy, and contraceptive use have received the most attention and centers have demonstrated that they can, for example, increase contraceptive use and compliance among adolescents with appropriate interventions. Other selected examples of school-based health centers successfully targeting risk behaviors among adolescents include substance use, including tobacco use, school attendance truancy, and discipline problems.

A number of challenges remain, however. Perhaps most serious are the limitations to access. First, most centers are available only to students enrolled in the school in which they are located, so students who have dropped out or are homeless or otherwise transient (and thus among the most vulnerable) may not be able to receive care. A high proportion of students simply move to another school every year, which also may interrupt their ongoing care and relationships with caregivers. Second, varying state and local laws may restrict adolescent’s access to reproductive health care, while parental consent requirements pose additional limitations in many jurisdictions. Funds are chronically limited, and mental services in particular are not sufficient to meet demand.

Insurance issues also pose problems. School-based centers may identify problems that require follow-up care but are not in a position to ensure that uninsured adolescents who require care are referred to another provider. Although the available data indicate that care provided through school-based centers complements, rather than duplicates, services available elsewhere, adolescents who do have insurance may still need to see a primary care physician in their health plan to obtain necessary referrals.

School-based centers have been operating for more than 25 years, and the funding available for them has grown, particularly over the past decade. Although more diverse sources of funding have been identified, Juszczak noted that funds from the settlement of tobacco lawsuits, which have been a significant revenue source in a number of states, will begin to decline soon. At the same time, maternal and child health block grant monies have been diminished in recent years, and these combined losses could have a profound impact on small, school-based centers.

Moreover, she noted, a significant portion of the care provided in school-based settings that is eligible for Medicaid coverage is uncompensated since the care is not provided by the recognized primary care physician, providers in school-based health centers cannot be the primary care physician and the state does not have policies in place which allow school-based health centers to be reimbursed outside of this relationship. Finally, an important component of the service that school-based centers provide (as do other kinds of programs that serve adolescents) goes beyond the kind of medical care that could be covered by insurance, even if more of their clients were covered. Counseling and health education are important and save money by preventing a variety of problems, but they are not generally reimbursable costs. Juszczak closed with the observation that these circumstances all clearly point to a need for new funding sources to keep these centers in place and expand their reach.

Managed care providers do not often care for the most vulnerable adolescents, yet they still face some of the same issues, as Charles Wibbelsman, a physician with Kaiser Permanente in San Francisco, explained. Perhaps the greatest challenge is that of confidentiality. Adolescents seeking contraception or care for other issues that they do not want to share with their parents may not want to risk having their parents receive a bill or other notification of services rendered through a family plan. In Wibbelsman’s experience, young people will often forgo the care available through a family’s health plan and go to Planned Parenthood or another kind of center to avoid this risk.

Wibbelsman pointed out that many varieties of managed care are available and Kaiser’s approach has sought to maximize preventive medicine in serving adolescents. Kaiser is a group model health maintenance organization (HMO)³ in which care is prepaid (by the employer or subscriber), so itemized bills are not required, although copayments may be required at the time of service. Kaiser is thus able to offer comprehensive care for adolescents, including contraception and care for sexually transmitted diseases, on a confidential basis. As the organization has grown, they have opened a growing number of adolescent centers throughout Northern California. A primary goal of the centers is to offer comprehensive evaluations, including risk assessment, to all their patients—rather than treating only the condition that instigated the visit.

Moreover, the organization has been very flexible in responding to the recommendations of practitioners regarding ways to better serve their adolescent patients. For example, they found that by offering emergency contraception on site at the clinic, rather than writing a prescription that would need to be filled at a pharmacy or referring the patient to another site, they could better serve adolescents and also save money.

Kaiser is a unique HMO, in part because it has focused so much attention on creative ways to deliver health education. Their strategies include an educational theatre program that works with school-based centers, as well as a variety of guides for adolescents and parents to help them understand both health issues and alternative care options. Few other HMOs have made comparable efforts to serve the needs of adolescents.

One element of the system was mentioned perhaps more than any other throughout the day: government programs and funding that support care for adolescents. Dianne Ewashko (New York State Office of Children and Family Services) offered the state perspective, while Josh Sharfstein, a physician and commissioner of health (Baltimore City Health Department) offered a local government perspective.

Ewashko began with the point that the needs of adolescents are more complex than those of any other age group. The percentage of this group with mental health issues is three to four times higher than that of other age groups, and the same holds true for substance abuse issues. Other risky behaviors are also prevalent with this group, and adolescents also display a variety of developmental needs. Moreover, many adolescents present themselves with multiple needs at once, coming to centers with urgent needs for major dental work, asthma, and a sexually transmitted disease, for example. Approximately 70 percent of the young women who enter the juvenile justice system, Ewashko explained, test positive for a sexually transmitted disease, while 76 percent of the male and female population entering that system have a history of substance abuse. Moreover, when addressing the problems of vulnerable adolescents, providers need to include children as young as 9 or 10 years old, who routinely enter the system because they are already using and selling controlled substances, for example.

New York state has additional challenges because so many vulnerable adolescents go to New York City. The state has made it a priority to offer care to every child, and, as Ewashko mentioned, they have worked on fostering collaboration and coordination among different elements of the system to better serve so-called cross-system children, who need more than one kind of service or support. Training and technical assistance for

staff at each agency with responsibility for adolescents has helped them better understand what services are covered by Medicaid.

Because of low reimbursement rates, many practitioners do not accept Medicaid patients; dentists and psychiatrists are two kinds of specialists the adolescent population badly needs that are in short supply in the state. However, New York City’s Medicaid managed care approach establishes a consistent primary care doctor for each enrollee and provides Medicaid recipients with a list of participating specialist providers and facilities. From Ewashko’s perspective, perhaps the biggest challenge is to find ways to serve not just the child but the entire family. Because the most vulnerable adolescents have such complex needs, it is critical that providers address not just health issues, such as substance abuse or the consequences of risky sexual behavior, but underlying causes as well. There may be a need for legal services for the foster or biological family, a need for other kinds of support so that the caregiver can succeed in his or her role, or a need to set up a system to make sure the child takes prescribed medication regularly. Like most of the presenters, Ewashko stressed the critical importance of coordination throughout the system.

Sharfstein echoed that point, noting that coordination across agencies and levels of government is very difficult. Although much of the conversation about caring for adolescents refers to a “system,” the term does not adequately describe what actually exists. A child seeking care has little understanding of the boundaries between organizations, regulations, and policies that affect what is available where, or even, perhaps, of the relationships among his or her assortment of problems. Individual agencies tend to focus on the adolescents they see and on planning their own budgets and priorities and are not generally in a position to consider the system as a whole or to take action on their own to improve quality and efficiency. Policy makers at the local, state, or federal level may want to focus on ensuring care for the whole population of adolescents, but they typically are assigned responsibility for one element, such as medical care or foster care.

From Sharfstein’s perspective, the world’s greatest health care program cannot effectively address the complex needs of a child who is dealing with a dysfunctional family, school, and neighborhood.

The problems that Sharfstein sees in Baltimore are the same ones that other speakers enumerated: depression, sexual risk taking, teen pregnancy, substance abuse, dropping out of school, violence, and the like. The city has a variety of health centers and centers for adolescents and for the community at large, academic health centers, and school-based centers. They have after-school initiatives, some run by the Health Department, which include services that target adolescents at particular risk for mental illness, school failure and delinquency, and those in out-of-home

foster care placement. One effective strategy has been to develop teams that can visit adolescents who are at risk and individually link them to an agency or program that can help with the immediate problem. After a year of operation, the program has seen a one-third decline in arrests and rearrests among young people who were enrolled.

The principal challenge Sharfstein cited, apart from lack of insurance coverage, was lack of capacity. Baltimore has not been able to put in place interventions there is reason to believe can be very successful, such as screening for sexually transmitted diseases among middle school students, or to cover all the adolescents who could be helped by others, such as the Operation Safe Kids violence prevention program. Sharfstein reiterated the lack of reimbursement for mental health services as a critical deficit. For example, he described multisystemic therapy, an intervention recommended by the Surgeon General, in which a team addresses the mental health problems of serious juvenile offenders comprehensively by providing therapy to build the skills of the parents as well as the child, intervening at the school if necessary, and so on. While this intervention has demonstrated significant benefits and has become a reimbursable expense in other states, Baltimore is able to offer this intervention to a tiny fraction of the roughly 2,000 adolescents he believes would qualify for it. Sharfstein believes that without this kind of therapy, adolescents who might benefit from it end up costing the city and the state far more when they require detention, out-of-home foster care, and other programs.

Sharfstein had three ideas for improving adolescent care. First, the federal government should develop clear incentives for states to follow best practices as soon as evidence becomes clear. Second, the state governments should both hold agencies accountable for outcomes and provide leadership from the top to facilitate interagency collaboration. Third, local governments should take the lead in identifying innovative ways to link community resources.