What if Your Child Has a Chronic Illness?

Jackie Monkarsh takes her children to the doctor for much more than the usual rounds of check-ups and immunizations.

Eli, her 7-year-old son, requires daily medication for his asthma and has been hospitalized three times. Perri, her 11-year-old daughter, is allergic to dust mites, olive trees and cats. As a result, Monkarsh, who lives in Hollywood, sometimes needs to get to the doctor’s office quickly, and on evenings and weekends.

Over the years, Monkarsh, by necessity, has learned a lot about how to choose the best health plan for her children. Because her children require frequent visits to specialists, she needs a plan that allows her to go directly to a specialist without getting approval from a primary doctor each time.

Monkarsh has heard the stories from friends about the “hassle factor” in some managed care plans that can make it difficult to get access to specialists or even to see the same doctor each time. But Monkarsh and her husband, Steven, both of whom have belonged to HMOs for many years, have learned how to make the system work for their family.

The key is picking a good health plan to begin with, says Monkarsh, who belongs to the Kaiser Foundation Health Plan.

That’s a daunting proposition even if your child is healthy. And it becomes even more difficult if your child has asthma, allergies, diabetes, birth defects and other special medical needs.

The more severe your child’s medical condition, the more important this investigation might be, suggests a recent unpublished study by Elizabeth J. Jameson, a senior analyst at the Institute for Health Policy Studies at the UC San Francisco School of Medicine. Children with sickle cell disease, spina bifida and craniofacial defects such as cleft palate fared better in publicly funded programs such as Medi-Cal than they did in certain private managed care programs provided by employers. These conclusions are based on interviews with 42 physicians and 12 nurses, in which they compared children’s medical care in each setting with established treatment guidelines for each disorder.

There’s no way, of course, to be absolutely sure a managed care plan will be satisfactory. But potential subscribers who ask most of the right questions can more easily weed out those plans that won’t meet their needs, according to patients, doctors and child health advocates. To find out exactly how easy it is to see a specialist, first call the plan’s member services department and ask, suggests Dr. Michael S. Kaplan, chief of allergy for Kaiser Permanente Los Angeles Medical Center. If you know anyone who is a member of a particular health plan, ask he or she how easy it is to get an appointment with a specialist.

You might also contact the local offices of medical and disease support groups--the Asthma & Allergy Foundation of America ([800] 624-0044), for example--to ask for the names of members who belong to various health plans whom you can ask about their experiences. Some organizations, such as the Cleft Palate Foundation ([800] 24-CLEFT) refer parents to local physician specialists who provide information about their experiences with various managed care plans.

Check to see if your plan will give you access not just to a specialist in a particular field, but to a specialist who works primarily with children, advises UCSF’s Jameson.

Ask if your child will get to see the same specialist most of the time. That’s important so your child can get to feel comfortable with the doctor and to ensure good continuity of care.

Experts also advise that you ask how accessible the specialist or your primary doctor is after hours. If your child has cleft palate and gets chronic ear infections, for instance, and must be taken for treatment to an after-hours clinic, will an ear specialist be available for consultation?

Whether your child sees primarily a specialist or a pediatrician may depend on how severe the health problem is. At Kaiser, for instance, children with asthma are treated by a team of doctors that includes a pediatrician, an asthma and allergy specialist, a social worker and a pharmacist.

At some Kaiser clinics, Kaplan says, there are many pediatricians with special interest and experience in treating asthmatic patients, enabling children with less severe asthma to see them most of the time. But someone with a severe asthma, he says, would regularly see the asthma specialist.

If your child will mostly be seen by a pediatrician, ask how many patients that doctor has with the same medical condition as your child’s, suggests Dr. Laura Clapper, a pediatrician and regional medical director with Health Net, a large HMO. If the doctor sees only one or two such patients, keep looking for another plan or medical group, she suggests.

Another good question is whether the plan offers any special programs or support groups for the medical condition. “We want to reach out to asthmatics,” says Clapper of Health Net. So the plan offers “Peak Performance,” an education program for children and adults with asthma. There is also a diabetes education program.

Pharmacy benefits is another area that may need extra investigation. Is there a benefit limit on prescriptions? If a medication deemed best for your child’s condition is not dispensed by your managed care plan, is it possible to request it?