California ranks last in the nation on key measures of a quality health care system for children with special needs, according to a report based on federal data released yesterday.
One in seven children in the state – an estimated 1.4 million – have a special health care need. But only 17.1 percent of them have adequate health insurance, and receive basic preventive care and comprehensive, coordinated medical care, the report found. By comparison, 40.3 percent of children nationwide have health care that meets this minimum quality index.
The report was commissioned by the nonprofit Lucile Packard Foundation for Children's Health and produced by the Child and Adolescent Health Measurement Initiative, a research and policy group.
Its findings, based on the most recent data available from the 2007 National Survey of Children's Health and the 2005-06 National Survey of Children with Special Health Care Needs, do not analyze the quality of individual health care received. Rather, they measure the state's system of care for special-needs children.
Children with special health care needs are those who have a chronic physical, mental or developmental condition requiring health care beyond what most children need.
Special-needs children are more likely than their peers to have inadequate health coverage (34.7 percent to 23.1 percent) and repeat a grade in school (20.9 percent to 7.8 percent), the report found. Their conditions can range from mild asthma to heart disease and cerebral palsy.
In California, nearly 60 percent of children with special health care needs have two or more conditions, the report found. The most common conditions include allergies (48 percent), asthma (42 percent), attention deficit disorder (24 percent) and emotional problems (20 percent).
Kids with the most complex health needs often face the greatest challenges in accessing the services they need, the report found.
About 107,000 special-needs children are uninsured in California, placing the state 40th out of the 50 states and Washington, D.C. for health coverage. But even among the insured, more than one-third do not have adequate insurance to meet their needs.
Special-needs children who are low income, publicly insured or racial minorities are more likely than other children to have poor health status and receive subpar care, the report found.
For example, three out of 10 white children with special needs in California did not receive family-centered care, compared to six out of 10 black children and eight out of 10 Latino children in primarily Spanish-language homes. Family-centered care is measured by factors such as whether services are culturally and linguistically appropriate, and whether doctors and health-care providers spend enough time with and listen to patients.
The report also found that parents were more likely to cut back on work or stop working altogether because of their child's condition if their children were publicly insured: About 36 percent in public programs reduced or stopped working, compared to 16 percent of parents with private insurance.
"Any disparity is not acceptable. All kids should get access to the care they deserve regardless of who they are or where they live," said David Alexander, a pediatrician and the Lucile Packard Foundation's president and CEO.
Among the other areas of care in which California performed poorly:
- More than 26 percent of parents of children with special needs reported experiencing stress. That's a higher percentage than in any other part of the U.S. Nationwide, 19.3 percent of these parents experienced stress.
- Nearly 15 percent of special-needs children in California faced difficulty accessing community-based services, compared to 10.5 percent nationwide.
- In California, 37.1 percent of special-needs children received needed services for their transition to adulthood. Nationwide, 41.7 percent received transition services.
Health care reform offers California some opportunities for improvement – particularly in extending dependent health coverage to age 26 and expanding health insurance generally, Alexander said.
Still, these are just "baby steps and inklings of hope," Alexander said. The national dialogue on improving the health care delivery system largely overlooks children, he said.
"When people talk about the system, they're creating changes that are primarily organized around the needs of seniors and adults," he said. "They've asked kids to fit into a system that works mostly for adults."
Unless the system is fundamentally changed, Alexander said, California and the nation – currently "a C-minus kind of performance" at best, he said – will continue to perform poorly in meeting the special health care needs of children.
Because their needs are more acute, reworking the health care system for children with special needs could offer a roadmap for the rest of the population, Alexander said.
"If you can make a system that works for them, it's going to work for everybody," he said.