Newswise — Your parents still might be willing to do your laundry, but if you’re over 18, they can’t make your medical decisions. Are you ready to navigate the adult health care system?
Comic-book writer Len Ward faces the day-to-day struggles of a young freelancer: uncertain work and low pay. And, like many others in his shoes, he has no health insurance.
Ward, 26, was born with a rare condition called endocardial cushion defect. Fortunately, he’s been symptom-free since his second open-heart surgery at 8 years old.
“I have a cardiologist,” Ward says. “He’s a children’s cardiologist but he’s well-versed in my condition. He’s the only one who knows that much about it. For the foreseeable future I will be sticking with these doctors.”
All too often, the health care system fails to keep up when children with chronic conditions reach adulthood, says Patience White, M.D., a professor of medicine and pediatrics at the George Washington University School of Medicine and Health Sciences.
“It’s not unusual” for a 26-year-old to be with a medical condition to be without a medical home or age-appropriate health care, says White, who is chief public health officer of the Arthritis Foundation. Moreover, “the bulk of young American adults do not interface with the health care system during their adult years.”
So what’s wrong with that?
You Have Adult Health Needs
Emerging adults “may not have heart disease but they have risky behaviors,” says Angela Diaz, M.D., medical director of the Mount Sinai Adolescent Health Center. Young adulthood is a time for “safe experimentation,” but in fact, common not-so-safe behaviors include unprotected sex, substance abuse, violence and preventable injuries.
Regular screenings can pick up problems that would otherwise progress unrecognized and untreated.
“I didn’t have insurance in college; I was fortunate not to get sick,” recalls Ebonie Williams, a social worker in Manassas City, Va. But that was then: “Now I have a limited form of lupus; it was just diagnosed last summer.”
You might need to get your lifestyle in synch. Obesity rates for young adults are skyrocketing. Balanced nutrition also can be a problem if you’re a vegetarian or vegan. Maybe you want to quit smoking, but find you can’t do it alone.
What the System Offers
The Guidelines for Adolescent Preventive Services say that check-ups should include blood pressure and BMI monitoring along with a comprehensive exam with cholesterol tests, STD screening, and for women, Pap smears. Providers can make sure tattoos or piercing sites are intact and infection-free.
Older teens are “wonderful health care consumers,” Diaz says. “For instance, we have a 24-hour on-call doctor. The kids use this appropriately, they don’t abuse it.”
A the Mount Sinai Center, 10,000 New York City teens and young adults have access to free “mental health, reproductive care, primary and acute care, and specialty care: for obesity, eating disorders, Gay/Lesbian health issues, interpersonal violence, and pregnancy prevention and treatment,” Diaz says.
Inevitably, though, comes the time to cut the apron strings. At the Sinai center, “the official age is 10 to 22,” Diaz says. “Sometimes they don’t want to go.”
Bridge to Adulthood
Young women who seek out birth control providers may also find unexpected resources.
“More and more women are turning to Planned Parenthood for basic health care, from contraception to pelvic exams to cancer screenings,” says Cecile Richards, the federation president, adding that the “health centers are obviously a critical entry point into the health care system for millions of Americans.
Another “bridge” for men and women might be the military health system; for others, it’s college.
The University of Maryland Health Center in College Park serves a student body of 37,000 strong. Kelly Kesler, MS, CHES, is assistant director of health promotion at the health center, which includes a women’s health center, mental health unit and an urgent care clinic as well as an orthopedic surgeon onsite once a week.
Between freshman and senior year, students do pick up patient skills, Kesler says.
Some health visit basics they might not have known: “Okay, you can’t just walk in and they’re going to see you right now. You need to make an appointment,” Kesler says. Or at the pharmacy, “some student had never had to bring in their own prescriptions. Some aren’t sure of the difference between a generic and name-brand medication.”
“I can’t emphasize enough the importance of prevention: learning stress-management techniques now, basics like sleep hygiene,” Kesler says. Above all, college health care “is an opportunity for students to learn about advocating for themselves.”
Skills for the Heath-Savvy
Although you seldom see adult patients in pediatric practices, it still “is a shock when a youth and their family learn that they cannot continue to be seen by their pediatrician,” White says. “The fact that there’s no posted policy that warns you that you will have to move on to an adult health care provider is amazing.”
The transition process “is pretty straightforward,” she says. “You need to know how to communicate about your medical condition and what to do to stay healthy, have a copy of your medical record, know how to make a doctor’s appointment and get your prescriptions. You should learning these skills at 13 and have a transition plan by age 14.”
Yet some 25-year-olds might not be able to say with confidence (1) “I know my medication and dosages,” (2) “I know when to call my health provider to report a change in illness status” and (3) “I have an emergency plan.”
Can you fill in the blanks about your family medical history? Could you locate your medical records? Could your kids?
“I believe my current cardiologist has all my medical records,” Len Ward says. He doesn’t sound too sure. “I wouldn’t know where to start,” says Ebonie Williams.
Taking control of your medical record doesn’t have to be a big deal, White says: “I just discuss what’s in it and give it to kids on a flash drive; you just download it. They just put it on their computer. I ask them to keep it in a secure place where it stays confidential.”
Hard Times, Hard on Your Health
Taking on your own health care is part of becoming an adult, but the transition can be rocky. And today’s weak economy and tight job market makes it even tougher.
In light of his self-employment and preexisting condition, Len Ward considers health insurance a lost cause. “I’m always thinking, ‘when is the other shoe going to drop?’” he says.
“This age need access and services but are least likely to get it,” Diaz says. “This really needs to be looked at in health care reform.”
Shani Muhayman, 28, is currently unemployed. She budgets “severely” to keep health insurance through COBRA. “It costs $374 a month,” she says. “It’s a bit much to afford that and rent and everything else.” She’s hopes to find a job in the Washington, D.C., school system before her coverage runs out.
According to a recent Medical Expenditure Panel Survey, “young adults in the 19 to 24 and the 25 to 29 age groups were at greatest risk of being uninsured, with over a third without health insurance.”
Advises White, “Look at your parent’s insurance; find out how long you’re covered, or if you qualify for SSI (Supplemental Security Income), which often includes health insurance. These are two options to research.”
Youthful Plusses
A spirit of independence and advocacy can serve you well.
As a new college graduate, Muhayman recalls, “I applied for work at a nonprofit. I asked about health insurance and was told they did not offer it at the time." So she negotiated: “As a condition for me to get the job, I said I would be willing to begin the process of looking for health insurance” for the organization. They took her up on the offer.
Although Len Ward wryly advises peers: “don’t be a freelance comic book writer; have a better plan than I did,” things are looking up, with his first book due to come out in November. He recently went to Capitol Hill with the American Heart Association to lobby for health care reform, and just returned from a yearly gig as a counselor at a camp for kids with heart conditions.
Idealism and resilience are important attributes, here’s another:
“Students have an advantage over older folks like us,” Kesler says. “They are very much attuned to health technology. They visit respected health consumer Web sites, they can use their iPhones as pedometers and they can use a variety of apps to track their health” online.
SIDEBAR
Parents: Letting Go What is your son or daughter rebels — or isn’t ready — to deal with a medical condition on their own?
“Let them have the reins when they’re 17, let them crash and burn while they’re still at home and still have a safety net,” White says. “If it happens in college and people leave school because of an [out-of-control] medical issue, they usually don’t come back.
“You can’t protect them forever. Take the analogy of driving. Would you send them off to college without ever having driven and expect them to drive on their own without practice?
“Over-protectiveness can sometimes be a negative. People need the time to practice their skills to manage their health condition before going out on their own.”
www.hbns.orgCenter for Advancing Health
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