The story behind California’s kids who aren’t getting the help they need

Last summer, my editors at the Center for Health Reporting told me they’d heard that California had problems serving young children with disabilities. It seemed like an interesting and important topic. But what was the actual story?

I reached out to an array of different experts on children’s health in California. From a conversation with the director of the Child and Adolescent Health Measurement Initiative at the Johns Hopkins Bloomberg School of Public Health, I learned that California had a particularly low rate of developmental screenings. In 2016, less than 21 percent of California parents reported that their young children’s health care providers had them complete a standardized developmental screening tool, according to an analysis of the National Survey of Children’s Health data. That put the state in 43rd place nationally.

Around the same time, I met with another source who expressed serious concerns about Early Start — a federal program administered in California by 21 nonprofit regional centers — which serves more than 41,000 children under the age of 3 with cognitive, language, physical or other delays.

I thought these two pieces would make for a natural pair: Why weren’t California’s youngest children getting screened? And why did young children with developmental issues have such trouble getting mandated services?

As a California Data Fellow, I was especially excited about the data possibilities of this project, especially for the Early Start story. Regional centers publicly reported purchase of service data — and an initial look seemed to suggest significant geographic disparities.

Data: Lessons and challenges

For the first story, on developmental screenings, there wasn’t as much data on developmental screenings as I had hoped. I had the national survey data, which was useful for putting California’s performance in a national context. But, in part because physicians didn’t get paid specifically to do the screenings, there wasn’t much reliable billing data. The data element of the first story ended up hinging on one survey finding, along with conversations with scores of experts, advocates, doctors and others. I also found data from the federal Office of Special Education Programs that showed that only 2.7 percent of California’s children under 3 received early intervention services in 2015. In some states, including Massachusetts, the rate was above 9 percent. That seemed to offer further evidence that children in California were being overlooked.

By contrast, there was plenty of data on Early Start through the regional centers’ purchase of service data. To my surprise, though, the state didn’t keep it in a centralized database. There were 21 regional centers and 21 datasets, but they weren’t compiled into one master file. Luckily, I knew that an attorney in Los Angeles was examining regional center data to look for disparities. During the course of several months, he made himself very available to discuss this data — and to help me sleuth out other available data. During the course of reporting this second story, I learned that the federal Office of Special Education Programs (OSEP) had sent a letter last year notifying the California Department of Developmental Services that the program had been demoted to “needs intervention” status — the only state in the country with such a low designation. I followed up with OSEP, and they sent me a series of links to reports that held even more data.

My attorney source offered to compile the most recent Early Start purchase of service data. This took a while, since he was doing it during his off hours. In the meantime, I interviewed dozens of attorneys, advocates, doctors, providers and regional center administrators. Many people were concerned about the Early Start system, but because it was so decentralized, most people had a perspective based on their local area, and different people highlighted different problems.

I eventually ended up getting the updated purchase of service data. By that point, the focus of the story had partly crystallized around issues that weren’t simply rooted in that data. But the data still played an important role in highlighting variations in services around the state.

For example, fewer than 86 percent of young children in Early Start were evaluated and received a written plan within the required 45 days in 2015. But this varied from fewer than 52 percent of young children receiving the plans on time at Westside Regional Center to 96 percent receiving them on time at Eastern Los Angeles Regional Center.

Similarly, at Kern Regional Center, 8.4 percent of young children who were approved for Early Start in 2016-17 received no services, a number that rose to 13.4 percent for Spanish-speaking children. By contrast, at Lanterman Regional Center in Los Angeles, just 0.4 percent of children — and 0.3 percent of Spanish-speaking children — went without services.

A few data lessons here:

• The state doesn’t always compile the data the way you think it should. Sometimes you have to gather the data yourself; sometimes you can find someone else who is willing to share it with you.

• The data doesn’t always tell you what you think it’s going to tell you. In the case of Early Start, for example, disparities did exist, but they were more pronounced for older children than for the young children I was focusing on.

• Finding guides who know what data is out there, and how to navigate to it, is very helpful. People can be very generous with their time, especially when it’s a topic they care about.

Finding subjects: Lessons and challenges

Data can be impactful. But its import is only driven home when you understand the real people it represents.

The second challenge I ran into while reporting these stories was finding the families of affected children. This was especially difficult for the first story on the shortage of developmental screenings. I had to find a family to which something (the screening) hadn’t happened. They needed to know it hadn’t happened and understand the ramifications. I put out feelers with all kinds of organizations and interviewed a lot of families who didn’t quite fit. Finally, I connected with Kirsten Yeates and her daughter Riley. Kirsten had kept fastidious records of Riley’s medical history and had an incredibly detailed recollection of everything that happened over the years. I was also able to talk with Riley’s current and previous pediatricians to verify details.

It was easier to find families to talk about Early Start — these were families who wanted services and weren’t getting them. In order to understand if problems with the system were as widespread as my sources said, I felt I needed a broad cross-section of perspectives, and a lot of family voices. I called attorneys and advocacy groups and family resource centers. I attended a conference in Sacramento for families with children with disabilities. I posted on Facebook groups for parents of children with disabilities. I ended up interviewing many more families than made it into the final story. But having spoken with so many people — including so many families who shared firsthand experiences with problems — helped me feel confident in the story’s premise and conclusions.

A few lessons:

• The right person is out there, but sometimes it takes a while to find them.

• Sometimes it’s very effective to find people through service providers and attorneys. But it can also be effective to eliminate the middleman and strike up conversations directly at conferences or over social media.

Read Jocelyn Wiener’s fellowship stories here and here.