Health care system is failing adolescents

Research comes out every month identifying groups having difficulty obtaining needed services in our country’s health care system. A group often not discussed, perhaps because it is generally healthy, is adolescents. But a recent study by the Maternal & Child Health Policy Research Center (MCH) makes clear that when it comes to caring for adolescents, the health care system is not doing a very good job.

MCH co-director Margaret McManus tells State Health Watch the group previously had studied adolescents in the State Children’s Health Insurance Program (SCHIP) in selected states and had identified issues around provider availability, reproductive health care, and behavioral health care. The next step, she says, was to take a broader perspective and look at how the overall health care system is responding to the needs of adolescents.

What MCH found, she says, is that our health care system is not geared to meeting the needs of adolescents, especially in terms of preventive care, reproductive health care, and behavioral health care — both mental health and substance abuse.

Although most adolescents are reported to be healthy, Ms. McManus’ report says, the preponderance of evidence reveals that they confront significant health risks: physical and mental health problems; early experimentation with sex and drugs; physical inactivity; overweight and obesity; and substantial stress from school, family, and peer pressures. Adolescents who are low-income, minority, and living in inner cities appear to be at highest risk.

Nationally, according to the report, the annual costs of preventable adolescent health problems were estimated in 2002 to be $51.5 billion, or $1,152 per adolescent. When associated medical, legal, and lost productivity costs are included, the annual cost of preventable adolescent morbidity increases to $830.8 billion.

Despite the fact that adolescents face several health risks, their use of health services also can be a problem. Ms. McManus and her two co-authors, Kandi Shejavali and Harriette Fox, write that no other age group, except for young adults, is as likely to be without a usual source of care and have lower ambulatory visit rates.

"Foregone care is common among teens," they say, "especially among those who are older, low-income, uninsured, from minority backgrounds, or involved in high-risk behavior. . . . Despite high levels of preventable morbidity and potential cost savings, investment in adolescent health care has been limited. Moreover, few significant reforms have moved beyond the demonstration phase to wide-scale implementation, despite numerous national and state policy recommendations calling for improvements in adolescent health care."

The three researchers developed their report by interviewing more than 200 health care providers in four cities — Boston, Denver, Houston, and San Francisco — in a range of settings, including community health centers, school-based health centers, office-based practices, hospital-based clinics, family planning clinics, community mental health centers, and substance-abuse programs. The four cities were chosen based on their innovative adolescent health care leadership and program initiatives.

Providers who were interviewed painted what the researchers say is a "disturbing picture of the lives of many adolescents in their cities." They say the most common adolescent health conditions are indicators of the turbulent world in which they live, rather than signs of inherent medical problems. Moreover, they say, a significant proportion of teens experience a considerable lack of parental involvement in many aspects of their lives, including health care.

In all four cities, behavioral health conditions were cited as serious issues in the adolescent population, more so than reproductive health or physical health conditions.

"Providers described the most pervasive behavioral health conditions experienced by teens as depression, anxiety, and post-traumatic stress syndrome [typically resulting from family or interpersonal violence]," the report states.

"Substance abuse, most often alcohol, marijuana, and tobacco, was also reportedly widespread. The use of club drugs, for example, Ecstasy, was commonly mentioned, mostly among middle- and high-income teens. Providers told us repeatedly about the lack of hope and low self-esteem that characterizes many adolescents they care for, causing them not to feel good about themselves and prone to making risky decisions," it continues.

Reproductive health conditions were described as the second most important category of health problem by the providers, specifically sexually transmitted diseases and teen pregnancy. Physical health conditions mentioned most include obesity and asthma. Poor nutrition, lack of exercise, and even lack of sleep were said to be typical among teens.

When the providers were asked about subgroups with a disproportionate burden of health problems, their answers cited differences by income, age, sex, race, and ethnicity.

The interrelatedness of behavioral, reproductive health, and physical health conditions were commonly stressed among providers serving adolescents, the report says. The providers noted that adolescent health problems often occur in concert with other problems and with common risk factors. Thus, while adolescents often present themselves to health care providers with physical symptoms, the problem may actually be behavioral or gynecological. This is how the providers view the three areas of concern:

Preventive and primary health care.

According to the providers, preventive and primary health care don’t generally meet the needs of adolescents because there are too few teen-friendly sites of care.

The authors say that whenever they heard of preventive and primary care services that were adequately meeting the needs of adolescents, it was because services were easily accessible and at least some physical, behavioral, and reproductive services were coordinated. Through site visits in the four cities, the researchers learned that such arrangements are available in many school-based health centers, community health centers, and hospital outpatient departments with special teen clinics and multidisciplinary staff arrangements, a few group model HMOs with special teen programs, and even some mobile services.

According to the providers, what makes preventive and primary care services work for adolescents are delivery arrangements that allow walk-ins, extended office hours (late afternoons and evenings), anticipating no-shows, having separate office space for teens, eliminating cost-sharing, assuring confidentiality, emphasizing parent participation, and most important, having providers who truly care about treating adolescents and have the training to do so.

Roadblocks identified as standing in the way of providing comprehensive preventive and primary care to adolescents include provider availability and organization, insurance and managed care, and parental consent and communication.

Reproductive health care.

Providers said organization and delivery of reproductive care does not meet the needs of adolescents. Prevention and education don’t receive enough attention, confidentiality protections are not well understood or consistently implemented, and reproductive health care often is disconnected from preventive and primary care.

Reproductive health care appears to adequately meet the needs of adolescents where a broad array of reproductive services are available on a free and confidential basis and reproductive and primary care are linked in teen-friendly settings. Such arrangements were found in many family planning programs, community health centers, and hospital outpatient departments with special teen clinics, and a few group-model HMOs with special teen programs.

As with preventive and primary care services, reproductive health services that work are those that offer confidential protections, no cost-sharing, a teen-friendly atmosphere, easily accessible sites of care, public transportation, and evening hours.

Barriers to effective reproductive health care are lack of confidentiality protections, insurance coverage limits, insufficient financing for confidential care, inadequate information for adolescents, and limited provider availability.

Behavioral health care.

Providers in all four cities expressed the greatest concern that mental health and substance abuse treatment services are grossly inadequate to meet the needs of adolescents. The authors say a shortage of psychiatrists, psychologists, social workers, and substance abuse counselors trained to serve adolescents is widespread and has been at a crisis stage for some time.

Relatively few adolescents who need mental health services receive treatment, and even fewer receive substance-abuse treatment services, according to providers in all four cities. Those who do receive care generally have a serious emotional disturbance, are experiencing a crisis, or have been required by schools or courts to participate in counseling. Comprehensive, continuous treatment consistently is unavailable.

In settings where the behavioral health needs of adolescents are being met, the providers said, risks are identified early on, families are involved in treatment, mental health and substance abuse counseling are integrated, and a continuum of services is delivered in a timely manner by well-trained providers. In reality, however, such optimal arrangements rarely are found.

Providers offered many insights into what makes behavioral health services work well for adolescents, citing single point of access or one phone-in line but multiple sites of care, same-day services, evening and weekend hours, flexible scheduling, longer appointments, after-school programs, and outreach with particular attention to immigrants and others with little or no experience using behavioral health services.

Perhaps even more than with primary and reproductive services, having the right type of provider — skilled and interested in caring for teens — is key. All providers reportedly commented on the importance of providing mental health and substance-abuse treatment at much earlier ages. They also noted the value of having adequate numbers of male therapists and more therapists from diverse racial, ethnic, and linguistic backgrounds who understand the cultural and social context in which adolescents experience problems.

The most critical roadblocks to effective behavioral health and substance-abuse services are provider shortages and inadequate reimbursement rates. Other problems cited include restrictive managed care policies and arrangements, health insurance benefit limits and cost-sharing, inadequate funding and fragmentation of public programs, weaknesses in special education, stigma, parental consent requirements, lack of defined roles for primary care providers, and an overall lack of accountability. Unlike preventive and primary care and, to a lesser extent, reproductive care, providers concluded that there is an overall lack of accountability with respect to mental health and substance-abuse treatment services for youth.

"Not only are there enormous provider shortages," the report concludes, "there is no continuum of clinical services, no recognition of the unique needs of youth and opportunities for prevention and treatment, no widespread use of effective medications and other therapeutic interventions, no internal mechanisms for coordination among inpatient and outpatient providers or between physical and mental health services, and no data to track receipt of care or health outcomes."

Collaborative action needed

Ms. McManus and her colleagues call for creation of community-level adolescent health collaboratives with public and private representatives who would plan and implement more effective ways to deliver health services to adolescents. Activities that collaborative members might undertake, according to the report, include:

1. examining the range of potential opportunities to integrate and expand preventive, reproductive, behavior health services, and youth development activities;

2. developing a work force plan to increase availability of mental health and substance-abuse treatment providers trained to serve adolescents, the number of male reproductive and behavioral health providers, and the number of providers from culturally diverse backgrounds;

3. expanding the number and financial viability of school-based or school-linked programs as well as teen programs in community health centers, office-based practices, hospital outpatient departments, managed care clinics, family planning programs, community mental health centers, and substance-abuse programs;

4. developing uniform approaches for assuring adolescents’ confidentiality, strategies for sharing records, and ways for obtaining parental consent in a timely and efficient manner;

5. promoting improvements in care coordination focused on assuring adolescents’ adherence to treatment recommendations; maintaining communication among primary, specialty reproductive, and behavioral health services; and linking health, education, and community support services;

6. developing an outreach strategy, with peer educators and others, to encourage adolescents to use health care services and become active participants in health care decision making;

7. creating new models of parent outreach and education to support families in dealing with predictable adolescent challenges as well as addressing the needs of adolescents who are experiencing health problems;

8. expanding availability of school health education programs aimed at promoting self-esteem, healthy relationships, conflict resolution, sex education, physical fitness, and nutrition by involving community health programs.

System flaws are shocking

Ms. McManus tells State Health Watch that she and the other researchers were "shocked at how fundamentally flawed the delivery and financing health care system for adolescents is." And yet it’s not surprising, she says, because no action was taken on a federal study of adolescent health care from the early 1990s and there has been no concerted national attention paid to adolescents as a whole.

The sites they found that are working effectively are "wonderful, but few and far between," according to Ms. McManus. "They happen because there are a few strong personalities in the area, not because the system is set up for it," she adds. The solution that Ms. McManus sees is for action in Congress and the executive level of the Department of Health and Human Services to put more dollars into adolescent health. "Unless payment levels go up," she says, "we’re not going to get the provider availability we need."

[To see the report, go to: Contact Margaret McManus at (202) 785-7425.]