Special Needs Children Struggle to Obtain Quality Health Care

California children with special needs often receive less-than-adequate health care services, regardless of whether they are covered by private or public health insurance, a new analysis has found.

California was among the bottom six states in offering coordinated and family-oriented care to some of the state’s most vulnerable populations.

According to the report, 1 in 10 California children, or about one million, have special health needs.

Some key findings:

–California families are more likely than those in other states to reduce their working hours or stop working altogether to manage their child’s health care needs.

–41 percent of children with health insurance don’t obtain the services to meet their health needs.

–More than 40 percent of youngsters with complex health needs have a difficult time obtaining community-based services, such as finding doctors and scheduling appointments.

The health care they receive as children greatly impacts their ability to thrive as they grow and move through school, said Christina Bethell, lead author of the report and director of the Child and Adolescent Health Measurement Initiative at Oregon Health and Science University. The study was sponsored by the Lucile Packard Foundation for Children’s Health. (The Foundation is also a sponsor of calhealthreport.org.)

Part of the challenge is that researchers have only started collecting national child health data since 2001. “Even children with the least complex health conditions, the majority are not receiving the basic quality of care,” said Bethell.

In addition, a nationwide dearth of pediatricians with sub-specializations, as well as health providers who are able to care for these children as they transition to adolescence, has become worrisome.

Most pediatricians spend an additional two-to-three years on sub-specialty training, often with little economic incentives, said Edward Schor, senior vice president at the Foundation. “It extends their life as a trainee and postpones getting out into the world and working,” Schor said.

The study found that inadequate health care services places added financial and emotional burden on parents. About a third of California families with at least one child with health care needs are forced to cut back on working to manage their children’s access to care. These caretakers often manage multiple health services, including school-related programs, doctor’s appointments, and medical emergencies, Bethell explained.

San Francisco resident Maria de Lourdes Sanchez, 38, takes her 10-year-old son, who was diagnosed with cerebral palsy as an infant, to physical, speech, and occupational therapy, which keeps her from holding a full-time job.

But even outings to the Sunday mass or attending family birthday party have become rare occasions, especially now that her son is taller and stronger. Carrying him inside the family’s van is difficult for her and her husband. She’s applying to obtain a free or low-cost wheelchair ramp to make trips to her son school, medical appointments, and therapies feasible.

Echoing earlier studies, the January report found that communities of color are less likely to report their child’s special health care needs. Bethell said it could be attributed to their desire to use alternative health methods, feeling overwhelmed about having to arrange doctor’s appointments due to a language barrier, or holding jobs that do not offer them the flexibility to take time off.

With limited English skills, Sanchez recalled feeling frightened when she sought help for her son when he was months old. “I’d take him to the doctor and say, “My son is not breathing,’’ she said in Spanish. “The strength and courage to speak up for your children just comes out naturally.”

She now encourages other Spanish-speaking parents to ask questions, call service providers a second or third time, and show up at their offices if necessary to get health and educational services for their children. “We have to fight for children,” she said. “Parents are the only ones who can help them get ahead in life.”

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