The good news is that most of California’s children with special health care needs have health insurance. Unfortunately, that’s only part of the story. For nearly 40 percent of these children, their insurance coverage is inadequate to meet their needs, and low reimbursement policies make it extremely difficult for their families to find physicians and other care providers. As one parent of a special needs child said in a recent article from New America Media (NAM), “I called every therapist from Oakland to San Leandro, but none of them is willing to accept him.”

The NAM article, by Vivian Po, recounts the experiences of several Bay Area families, whose children have diagnoses that include cerebral palsy, Down syndrome, autism, Asperger’s syndrome, and epilepsy. The story highlights how program cuts brought about by California’s staggering budget deficit are worsening the underinsurance problem and taking a toll on families.

The issue is, of course, not limited to California. A national study published online March 8 in the journal Pediatrics notes that adequacy of insurance is strongly related to where a child lives, and that disparities exist within and among states. The authors conclude that legislation guaranteeing insurance for all children is important, but not sufficient. “If policymakers are interested in ensuring equitable treatment in the health care system for children with special health care needs, then policy initiatives aimed at reducing underinsurance and increasing uniformity of coverage across states are also needed,” they write.

A focus area for our foundation is improving the systems of care for kids with special needs, and adequate insurance must be a top priority. See our website at http://www.lpfch.org/informed/cshcn/.

Posted by David Alexander, MD

Tags: CSHCN

Although children with special health care needs account for only 10% of children in California, many of us know of or are affected by a  child who is chronically ill. The Family Voices Annual Health Summit and Legislative Day brought together families of chronically ill children for two days of story sharing, education, and rallying at the state Capitol to help raise awareness among lawmakers about this unique population.

On the first day, parents learned about current budgetary and legislative issues affecting their child’s system of care, as well as how to become fierce – yet effective – advocates for their child’s needs. They spoke with each other about their own experiences with insurance companies, pediatricians, school IEPs, and more. Their issues were summed up by one mother who lamented “I’ve been working within this system [of care] for over 20 years, and I’m just now starting to get it … it’s that complicated.” Her story was echoed throughout the day by other parents hoping for an opportunity to share their own story with someone who could help.

After a day of education and preparation, parents went to the Capitol to share their stories with California legislators. Some parents carried envelopes filled with receipts from the myriad of drugs they buy regularly for their child; others toted collages of their children, armed and ready to provide faces to match their stories of struggle. Regardless of their methods, it was clear these parents had one thing in common – they all wanted their voices, and their children’s voices, to be heard by someone with the power to make change happen. This kind of persistent, genuine advocacy is an important component to help legislators understand the impact their everyday decisions have on these children and their families.

Posted by Jordan Handcox

Tags: CSHCN

Journalist Vivian Po, of New America Media, has written an article that focuses attention on a critical issue for children with special health care needs: long waits to be seen by a pediatric specialist.

Many kids with special needs have multiple medical issues, and require the attention of one or more specialists with expertise in caring for children. California, like the rest of the United States, suffers from a severe lack of these specialists. Last year, the Children’s Specialty Care Coalition, a non-profit association, surveyed the medical directors from nine California medical groups, representing 2,000 pediatric specialists. Results of that survey, released in December, indicated that the waiting time for a specialist is between 16 and 114 days. Children with diabetes, for example, must wait 56 days to see a pediatric endocrinologist, and children with heart conditions wait 39 days before they can see a pediatric cardiologist.

Delaying needed specialty care for children, or forcing them to be seen in emergency rooms, is inadequate medical care, and can put lives at risk. The dearth of pediatric specialists results from several factors, most notably poor reimbursement for physicians who treat children, and extended training requirements that leave young physicians deeply in debt when they begin to practice.

Our foundation is working toward improving the systems of care for kids with special needs, including finding ways to provide more specialty care. See our website at http://www.lpfch.org/informed/cshcn/.

Posted by David Alexander, MD

Tags: CSHCN