Approximately one in seven children in California has a special health care need — that’s 1.4 million children. Yet our state ranks last in the nation on a minimum quality of care index that assesses adequacy of insurance, provision of basic preventive care, and meeting minimal criteria for care that is ongoing, comprehensive, coordinated, and family-centered.

This striking finding comes from a just-released study, Children with Special Health Care Needs: A Profile of Key Issues in California, commissioned by our Foundation and prepared by Dr. Christina Bethell and her colleagues at the Child and Adolescent Health Measurement Initiative (CAHMI).

The researchers also found that California ranks at or near the bottom nationally on numerous other measures, including transition to adult health care, stress among parents, and receipt of needed mental health services.

Such troubling findings will come as no surprise to California families who are caring for a child with special needs, or to the thousands of individuals throughout the state who work with, and on behalf of, these children and their families. The roadblocks that prevent development of a high-quality system of care are longstanding, complex, and difficult to overcome.

Here at the Foundation, we believe these findings signal that the time has come to join forces in a new way to bring about broad and lasting change. For the past two years we have been focusing our efforts on improving California’s system of care. We have convened experts — both providers and consumers — to develop a model for a higher quality care system.

Now, we are launching the California Collaborative for Children with Special Health Care Needs to create a shared agenda and to advocate for changes that bring the system closer to this model.

A key goal of this ongoing, statewide Collaborative will be to look beyond specific organizational issues and speak with one voice to decision-makers about the need for a more effective and efficient system for all children with special needs. The Collaborative will not replicate the many valuable efforts under way throughout the state, but will offer a unique opportunity for a cross-system partnership that can assemble the critical mass necessary to bring about significant change.

Collaborative members will include patients, families and caregivers, providers, insurers, disease-specific advocacy organizations, educators, researchers, and public and private agencies. Members will share information and will address issues that matter to all of these constituencies, such as adequacy of insurance, better access to medical specialists, education primary care providers on special needs, ethnic and income disparities; enhancing support for families, and smoothing the transition to adult health care.

The Foundation is committed to working with others on a long-term basis to bring these issues to public attention and to achieve results. We are committing staff and resources. I hope you will sign up now to receive information about the Collaborative as it develops.



Posted by David Alexander, MD

This week, we’ll be showing kidsdata.org at the California Rural Health Conference in Sacramento.

When visiting rural communities, we often get questions about why so little data are available. In this installment of Data Questions, we’ll address this issue:
“I live in a rural county — why does kidsdata sometimes show LNE instead of data for my region?”

LNE stands for Low Number Event. LNE is defined differently depending on the data source, but is shown when the numbers are too small to report. Showing LNEs helps us maintain statistical integrity and, in some cases, it helps ensure the anonymity of the children reporting the data. Whenever you see an LNE in a graph or chart, its definition is explained in the “footnote” below the data. On maps, regions with LNEs appear as white.

We know that in many cases, rural communities with small populations of children need to gather the same data as urban communities, but are burdened with a smaller pool of data available. We try to address that need in several ways. In some cases, we aggregate data across several years. In other cases, we offer data for regions made up of several counties with small populations. When possible, we aim to offer numbers alongside rates and percentages, so that even if there are not enough English Learners in a school district to report a reliable percentage, we can offer the number of English Learners.

A quick way to find out what data are available for your region is to go to the Data by Region page, select your region, and then click “View all data” at the top of the page.

Posted by Sarah Marxer and Felicity Simmons

Recently, we traveled up to Ukiah, CA, to provide an introduction to kidsdata.org for a group of key people working on behalf of children’s health in Mendocino County. The group participants asked several good questions about kidsdata.org and the data available on the site. Their questions, and our answers, are below.

Question: When viewing survey data, is there a way to find out the sample size?

Answer: In most cases, you will need to go to our data source, (a link to the source is found in the Data Source field below every table or graph) to learn the sample size of the survey. For example, you can find the number of students taking the California Healthy Kids Survey by selecting one of the reports on this page: http://chks.wested.org/reports/search. You can find information on the California Health Interview Survey sample sizes here: http://www.chis.ucla.edu/who-chis.html. The American Community Survey gives information about sample sizes here: http://www.census.gov/acs/www/methodology/sample_size_and_data_quality/ In general, we don’t report out small numbers from surveys. Those are reported as a Low Number Event, or LNE, in the graph.

Question: If the same data come from two different sources, how do you decide which to include on the site?

Answer: Our criteria include data quality, the consistent availability of data over time and across counties, and ease of accessing the data. We welcome feedback about our choices.

Question: Is it possible to compare multiple topics at once for your county, or compare your county to other counties, to see where there are outliers?

Answer: In early 2011 , we are aiming to launch a tool that will allow users to compare multiple regions and multiple topics in one table view. We’re adding it for the exact reason you mention — to offer the ability to quickly view outliers.

Question: Can you group similar counties together — by size, for example — without already knowing which counties are similar?

Answer: When displaying data results, we are exploring the possibility of grouping counties regionally, so that counties physically near each other are grouped together. We also could consider grouping according to population or economic make-up. We welcome your suggestions on groupings that would be useful for you.

Posted by kidsdata.org

You already know that Tuesday, Nov. 2 is election day.

But what you may not know is that there are a number of issues on the ballot this year affecting kids. Issues such as funding for community colleges and school districts, health insurance for low-income kids, and public safety are on the ballot. The people we elect at all levels of government, from senator to governor to state superintendent of schools to local council members, will decide on wide-ranging policies affecting kids.

Whatever your politics, please keep kids in mind when you go to the polls on Tuesday.

Need some data on issues affecting kids? Visit kidsdata.org for data on child safety, education, health care, and many other issues.

Posted by kidsdata.org