One out of every seven children in California has a special health care need, yet the state has ranked worst out of the whole United States on an index that measures the care of such children.
The study, released today, measures whether children have enough health insurance, basic preventive care medical care to see if it is comprehensive, ongoing and family-centered.
Children with special health-care needs are those who have a chronic condition that needs more serious health care than other kids do. Conditions can range from mild asthma to highly-complex conditions such as cerebral palsy or heart disease.
“These children are one of the most vulnerable segments of our society, and in many senses the system in California is not doing well for them,” said David Alexander, a pediatrician who is president and CEO of the Lucile Packard Foundation for Children’s Health, which commissioned the study.
Nearly all children with special health care needs in California experience some limitations in their daily lives. However, about one in four of the 1.4 million special needs children in California experiences difficulties severe enough that they are unable to do things other children their age can do.
These children and their families usually have the most difficulty in finding medical and dental care, child care, transportation, educational assistance, medical equipment, consistent health insurance, and a range of other services.
The study, Children with Special Health Care Needs: A Profile of Key Issues in California, analyzes the most recently-available data from two surveys of parents sponsored in every state by the US Maternal and Child Health Bureau: the 2007 National Survey of Children’s Health and the 2006 National Survey of Children with Special Health Care Needs.
One of the significant findings was that nearly one in four of these children has parents who cut back on work or even ceased employment due to their child’s health. This has a tremendous impact not only on families but also on employers.
In other findings include:
- Ethnic/racial and economic disparities in California are stark among children with special needs. Children of color and publicly insured children are much more likely to have poorer health status and sub-optimal health care.
- Children with special needs are much more likely to repeat a grade and to miss more days of school than children without special needs.
- California ranked 45th among states in addressing the transition from pediatric to adult care.
- California had the nation’s highest percentage of children whose parents reported stress from parenting their special needs child.
The barriers to creating a higher quality system are longstanding and complex, with no single solution, Alexander said.
Ensuring all children have adequate health insurance, and streamlining the way care is financed are two important steps, he said. Advocates and policymakers also need to press for treating children in an environment where their multiple health and social needs can be coordinated, and families can be involved in decision making, Dr Alexander said.
Although California ranks poorly on many indicators, the state is not alone, he added. “Throughout the country, children with special needs receive care in a system that is poorly designed to meet their specific requirements. As health reform is implemented, we must be sure that the needs of this growing population finally are addressed.”
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