Magazine article The Exceptional Parent

Managed Care and Children with Chronic Illnesses or Disabilities

Magazine article The Exceptional Parent

Managed Care and Children with Chronic Illnesses or Disabilities

Article excerpt

Among those caring for children with chronic illnesses or disabilities, the words "never-ending battle" are a common refrain. Today, however, parents and advocates are as likely to be referring to their endless war with managed care over insurance benefits as they are to grappling with a child's medical condition.

The good news: There are many weapons--online and printed resources, proven strategies, and expert help--to wield in the fight for the benefits special kids need. Managed care systems may be here to stay, but the growing class of "warrior" parents and advocates is a promising sign that decisions made by these systems to limit or deny benefits will not go unchallenged.

Real lives-real concerns

Joanne Kocourek is one of these warriors. A registered nurse who manages clinical research for a large hospital in Chicago, Illinois, she is exhausted, frustrated, "financially drained," at wit's end--but persevering. The family's former health plan denied vital services and constantly threatened to reduce others for Kristen, the Kocoureks' 9-year-old daughter who is adopted. Kristen has congenital central hypoventilation syndrome, which causes breathing problems, and mitochondrial cytopathy, an inherited metabolic disorder in which the body cannot generate enough cellular energy. Her sister, Annalies, 13, also has mitochondrial cytopathy.

Of the two, Kristen requires more care. A private nurse spends week nights at the family's home so Joanne and her husband, Tom, can sleep. On weekends, Joanne provides most of the care for Kristen, including intermittent ventilation. The fourth-grader also needs megadose vitamin supplements.

About four years ago, their former health plan pressured the Kocoureks to reduce in-home nursing care to just three nights a week, an effort they successfully fought with the help of their doctors. Their current health plan has pushed for institutional care, which the family maintains would be just as expensive if not more so, than in-home care: $7,000 to $9,000 per month. The Kocoureks also believe that institutional care would not be the best arrangement in terms of Kristen's quality of life.

Moreover, says Joanne Kocourek, the health plan won't pay for the costly vitamin supplements because lower dose--and less expensive--supplements are available over the counter. It also will not pay for the physical or occupational therapy that clinicians believe would help develop both Kristen's and Annalies's delayed motor skills, arguing that the children's schools are responsible for such therapy.

There are other snags that the family has run into. One is the insurer's refusal to commit itself in writing when denying or granting coverage. The other is the family's financial status--it is "too well off" to qualify for public aid, but they do not have enough money to pay many medical bills out of pocket. "It has been a battle all the way," Joanne Kocourek says with a sigh.

Putting children's needs first

Recent media reports have focused on health maintenance organization's (HMOs) misdeeds among the general population. They tend to overlook how managed care has affected treatment for kids with a chronic illness or disability.

About 20 percent of all children have a chronic physical or mental condition requiring services that typically extend well beyond the services most healthy children receive, according to national data. These difficult and expensive-to-treat conditions run the gamut--from asthma and attention deficit disorder to sickle cell disease, cerebral palsy, cystic fibrosis, spina bifida, craniofacial abnormalities, and adolescent depression.

Around 5 percent of all children with special needs account for about 90 percent of all pediatric healthcare spending. Particularly pricey are treatments by specialists, physical and speech therapy, medical supplies and equipment, and long-term care.

And there is the rub in this age of cost-conscious managed care. …

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