California is behind the national curve in caring for chronically ill children, according to a study released last week by the Lucile Packard Foundation for Children’s Health based in Palo Alto.

In particular, the coordination of care and access to specialists for California’s chronically ill children ranks among the worst six states in the nation, according to the study.

The Packard study was based on data from a survey of parents by the U.S. Maternal and Child Health Bureau and published in partnership with the Child and Adolescent Health Measurement Initiative at Oregon Health and Science University at Doernbecher Children’s Hospital in Portland. The study estimated about 1 million children under age 18 have a chronic health care need, such as asthma or diabetes. It also found:

• California ranked last in the nation (50^th) in the percentage of families having problems getting needed referrals for specialty care.
• The state ranked 46^th in coordination of care for medical treatment. The study said almost half of California’s chronic-care children do not get effective coordination of care.
• Families of children with the most complex needs usually experience the hardest time finding other essential medical services, the study said, including dental care, transportation and medical equipment, among other services.
• In California, families of these children are more likely to cut back on or stop working due to their child’s condition.
• Of the California families with insurance, only 59% of have adequate health insurance coverage for their chronically ill children.

“Compared with their national counterparts, children with special health care needs in California are receiving care that is less coordinated, less family-centered, and fails to meet a number of key quality indicators set forth by the Federal Maternal and Child Health Bureau,” the study concluded. “The cumulative impact felt by families—on employment, on time spent caring for their children, on family finances—is more acute in California than in the rest of the nation, as well.”

According to David Alexander, president and CEO of the Health and Science University in Portland, there are five steps the state can take to improve care and services for chronically ill children:

• Expand care coordination efforts;
• Make access easier for therapeutic and family support services;
• Improve the scope and availability of insurance;
• Improve access to specialists; and
• Focus on family-centered care.

“Our hope is that these investments … will encourage action toward an effective, cost-efficient system that truly meets the needs of children and families,” Alexander said.