Drawn to the Older Set
Before she became a renowned legal advocate for adolescents, Abigail English had a deep empathy for children in peril. She came of age during the 1960s, graduating from college at the height of the social justice movement and joining a nonprofit that helped street youth. While writing a book on runaways, she met numerous social workers, judges, and probation officers who came into contact with her young subjects, as well as runaway teens and their parents. “That exposure to the way in which adolescents encountered the legal system when they ran away from home, made me very aware of the fact that there were serious deficiencies in how young people were treated by the law,” English says.
That experience led her to law school. The U.S. legal system was beginning to recognize the legal rights of children and adolescents. In the words of a 1967 Supreme Court case: “Neither the Fourteenth Amendment nor the Due Process Clause is for adults alone.” While other lawyers focused on the needs of the very young, English was pulled to the older set.
English says adolescents have a harder time attracting advocates, so she went where she was most needed. “They’re perceived as basically healthy and therefore not needing much, and as not very appealing because they act out, because they get involved in behaviors that we wish they didn’t get involved in,” she says.
English’s training was in law, not health, but she put the two together after meeting several doctors who were leading the then-nascent field of adolescent health. They came to her for legal advice on issues facing their young patients—consent, confidentiality, and financial access—which were preventing them from getting the care they needed. At that point a partnership was born.
“I very quickly realized that when teenagers can’t get health care, they don’t talk to lawyers. They don’t go to the legal aid office,” she says. “When they need health care, they either go to a clinic, or go to a doctor’s office, or they don’t get care at all. So I realized as a lawyer working on legal issues that affected adolescents’ access to health care, it would be very important to partner with the community of health care and medical professionals.”
Removing Barriers to Health Care for Teens
Throughout English’s career—including 20 years at the National Center for Youth Law in San Francisco, 10 years at the Center for Adolescent Health & the Law, and a one-year term as president of the Society for Adolescent Medicine— she’s focused on distinct legal barriers that prevent adolescents from getting the health care they need.
Consent & Confidentiality. One of her key areas is “consent and confidentiality.” In the 1960s and 70s, the first state and federal laws were passed to give adolescents some rights to confidential health care—without parental permission. English began her career in California, litigating for the rights of minors—all the way to the California Supreme Court—to receive confidential reproductive health care.
“I think that intuitively a lot of people say, ‘Well, I have to give permission for my daughter to get her ears pierced. Why shouldn’t I have to give permission for her to get health care services?’” says English. “Why shouldn’t I be able to know about all of the information concerning whatever health care services she gets?”
English’s response is that not giving teens some privacy around their health care has been shown, through research studies, to affect the ways in which they seek health care—sometimes delaying or avoiding it altogether. In some cases, teenagers fear punishment from their parents, or just don’t want to worry them, so they may not admit to risky health behaviors. Lack of privacy also influences how candidly teens interact with health care providers and disclose essential information to them about problems like substance use, mental health concerns, and sexual activity.
The consequences, she says, can be damaging to individual and public health. “If adolescents are discouraged from seeking health care that would allow them to be screened, diagnosed, and treated for sexually transmitted disease, that can have very serious consequences for their own health,” English says.
The research shows most adolescents choose to involve parents in their health care decisions, but there are exceptions, she says. “Adolescents at certain points in their development have a need for a greater sense of … autonomy and privacy. That’s a normal part of adolescent development.”
English also believes that most parents ultimately want their adolescents to be able to receive the health care they need. “Many parents support the possibility of confidential care for adolescents, in order to protect their health,” she says. “Also, many health care professionals are helpful in assisting adolescents to talk with their parents, even when it’s hard to do so.”
Financial Access. A related legal issue that evolved from English’s work on confidentiality is financial access to health care; if teenagers have no way to pay for their own health consultation, they’re unlikely to get it in private. Here, English has seen some creative approaches. For instance, sometimes health facilities agree to “write off” the bill for teens’ confidential care. In other cases, parents themselves have agreed to foot the bills of medical visits for their children, without insisting on knowing the details of those visits.
But financial access to health care is a struggle that stretches beyond the issue of confidentiality. English has worked for years to expand Medicaid programs to include more low-income teenagers. In the 1990s, she helped push through the first “State Children Health Insurance Program” (formerly S-CHIP, now CHIP), which provides health insurance to children and adolescents who do not meet the income requirements to qualify for standard Medicaid. CHIP was recently renewed in early 2009 and expanded to cover an additional 4.1 million children and adolescents.
Comprehesive Coverage. Now, English is focusing on extending the age of eligibility for those programs —so that adolescents will no longer “fall off a cliff” at age 19, when they generally lose Medicaid or CHIP eligibility. She also wants to make sure public programs cover a comprehensive set of benefits that are important for adolescents—including reproductive health, mental health, substance abuse, and dental care. She believes safety net programs should be easily accessible by the most vulnerable adolescents —for example, homeless youth who “may find it difficult or even impossible to enroll in a health insurance plan….simply because of the way the requirements are structured for who can sign an application, whether they have to have a fixed address, and what kind of documentation they need to provide for their income.”
English also advocates for adolescents growing up in the foster care system, and those who have aged out of the foster care system with little or no family support. In the latter case, she wants all states to sign onto the option in the Foster Care Independence Act of 1999, which allows states to extend Medicaid coverage to former foster youth.
Focusing on Prevention
For the general adolescent population, English would like to see more attention directed toward preventive care—including vaccinations for teenagers. Recently, more vaccinations are being developed and recommended for this age group—for instance, those that protect against HPV and cervical cancer, meningitis, Hepatitis B, and influenza. The challenge is letting families know these vaccinations exist and making them part of the annual health care routine.
English would also like the nation’s vision of preventive health care to include an annual physical for adolescents. “If they don’t get in and have a comprehensive health assessment, then there may be no recognition that they need some preventive mental health services,” says English. “There may be no recognition that they’re sexually active and need sexual and reproductive health services. There may be no acknowledgement until very far down the line that they are using substances and need some treatment services or counseling in that arena.”
Reaching Out to Teens
Eligible adolescents need to find out about those programs and enroll in them. When CHIP was reauthorized in early 2009, more funds were included for outreach and enrollment. Finding ways to target those funds to adolescents, especially the most vulnerable ones, is a challenge. “I think there’s been much less attention to outreach to the adolescent age group so far than there needs to be in the future,” she says. “And I think social workers have a role to play, youth-serving programs where adolescents congregate have a role to play, schools have a role to play in disseminating information about the options and the services and the potential coverage that’s available.”
English believes different professional groups could work together better to combine their resources and reach overlapping constituents—groups such as social workers, doctors, schools, families, and, of course, lawyers. “Whether by representing individual adolescents (to get services they need), or advocating with state legislatures and the Congress to change laws in beneficial ways. Or whether it be health care professionals and social workers educating lawyers about what kinds of services adolescents really need and what can be provided to them that will promote their health. I think all those kinds of collaborative efforts could be very beneficial.”
Aside from the specifics of health care financing and legal rights for adolescents, what English would most like to see is a sea change in public attitudes towards health care—for adolescents and everyone else. “It’s really quite shocking that in the United States of America, in 2009, health care is not considered a guaranteed right,” says English. “I think we need to shift our perspective and recognize as a nation that health care is a human right, and a legal right, and I think we need to make sure that right is extended to adolescents, as well as other age groups in the population.”
Excerpted from “Creating Healthy Opportunities: Conversations with Adolescent Health Experts.” View the full series at: http://www.americanbar.org/groups/child_law/projects_initiatives/child_and_adolescent_health.html