A statewide system charged with helping infants and toddlers with developmental delays often fails to provide timely access to crucial therapies – and sometimes struggles to provide them at all – according to interviews with dozens of families, attorneys and service providers.
Early Start – a federal program administered in California by 21 non-profit regional centers – serves more than 41,000 children under the age of 3 with cognitive, language, physical or other delays. Under federal law, the centers must identify these children, then provide them with occupational, speech and physical therapies, nursing support and family training, among other services. There is no income requirement to receive the services.
Early Start’s problems are of enough concern that the federal Office of Special Education Programs sent a letter last year notifying the state 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. That status reflected problems getting children’s initial screenings and paperwork done within the 45 days required by law, as well as failures to prepare children to transition to school-based services at the age of 3.
A report published in January by the state Legislative Analyst’s Office points to "notable weaknesses" in California’s early intervention program, highlighting service delays and disparities in funding offered by regional centers and schools.
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Provided in a timely manner, these therapies can be life-changing, sometimes meaning children won’t need special education services when they get older. But waiting even a few months can make a huge difference to a child’s development.
Regional centers around the state are acutely aware that intervening early is "critically important," said Lori Banales, director of client services for the children’s division of Alta California Regional Center, which serves Sacramento and nine other Northern California counties.
She said keeping up with demand is difficult.
Alta’s rates are frozen at a level that is not competitive with what school districts and insurance companies can pay contracted psychologists, said Peter Tiedemann, the center’s Chief Operating Officer. Regulations also prevent the regional center from compensating staff for the long travel times needed to visit families in rural areas.
Many parents say they are confused about what services their children can receive, and how to go about getting them. Some say their calls to regional centers have gone unreturned for months; others report being required to attend special training or get denial letters from their insurance companies before their children can start services. (Under the law those are not required.) Even well-educated families say they are overwhelmed fighting for services while juggling work and the day-to-day responsibilities involved with caring for a special needs child.
"It’s been a total nightmare," said Cindy Rubin. Her 9-month-old, Darby, was born with Trisomy 13, a rare chromosomal disorder, which causes severe intellectual disability and life-threatening medical problems. Rubin, 42, said she begged the Eastern Los Angeles Regional Center for months for appropriate nursing support and a pulse oximeter that would let her and her husband know if Darby stopped breathing. After being approved for the pulse oximeter, she said, they waited eight months before they received it. With no family support, they barely slept, afraid Darby would die if they didn’t watch her. Much of the promised nursing support still has not come through.
Rubin, who has a high-level position in Los Angeles County social services, said she cannot imagine how hard the process would be for a family that does not understand government systems.
"I did every single thing they told me to do," she said. "I did everything they asked me to do and we’re still waiting."
Liz Spencer, a family resource center coordinator in Los Angeles who has been advocating for the family, said she knows many other families who deal with variations of what the Rubins have experienced.
"It’s a very hard system to navigate when you don’t know the questions to ask," she said.
The delays in services Cindy Rubin described reflect a statewide shortage of providers, including nurses, said Felipe Hernandez, chief of consumer services for the Eastern Los Angeles Regional Center.
"We’re only as good as what the providers can provide for us," he said.
When Early Start operates correctly, "it’s a lifeline to so many families," said Marie Poulsen, chair of the state’s Interagency Coordinating Council for Early Intervention. "I think the whole issue is access."
Shortage of help
Jim Knight, assistant deputy director of the state Department of Developmental Services, said the problems outlined in the federal government’s letter last year largely reflect problems at a few regional centers. The department has been working closely with those centers to correct those issues, he said. In the meantime, the department is undertaking an intensive study of provider rates, which it will submit to the legislature in March of 2019. At that point, legislators can consider whether increased compensation might lure more providers to work with the regional centers.
In the East Bay, there is "an incredible shortage of providers," said Jenaver Goodman, an early intervention teacher with the Alameda County Office of Education.
"I’m hesitant to use the word 'crisis,' but it’s starting to feel that way right now," she said.
In remote areas, the problem is often worse.
Jenny McLelland, a former police officer in Fresno County, said the Central Valley Regional Center was unable to send anyone to teach her son, James, sign language at his home in a rural part of the county. But the 45-minute drive into the city was too taxing for James, who has a tracheostomy and uses a ventilator to breathe. Eventually, the family had to move.
"The services just weren’t there," said McLelland. "They were there on paper. But they didn’t exist."
The process maze
But not all problems with Early Start can be blamed on provider shortages, advocates and families say. Each of the state’s regional centers has its own set of procedures.
"It’s all over the place," said Katie Hornberger, director of clients' rights advocacy for Disability Rights California. "We have 21 regional centers and 21 ways of doing things."
Problems vary by center, too. Statewide, fewer than 86 percent of young children in Early Start were evaluated and received a written plan within the required 45 days in 2015, the most recent data available. Fewer than 52 percent of young children at Westside Regional Center received these plans on time, compared with 96 percent for Eastern Los Angeles Regional Center.
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, according to state data compiled by Brian Capra, a senior staff attorney at Public Counsel in Los Angeles. 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.
Regional centers say some of these findings may be skewed, because insurance companies and school districts pay for certain children to receive services, which might mean they are not reflected in the data.
At some centers, families are put off because they can’t afford expensive co-pays that other centers will cover, said Fran Chasen, a public policy consultant who works with the state’s Interagency Coordinating Council for Early Intervention and with the Infant Development Association of California. Other families struggle to find transportation when they can’t get home-based services.
Scott Wiener (D-San Francisco), chair of the state senate Human Services Committee, said he has been concerned by accounts of regional centers requiring families to come in for formal training before their toddlers can start receiving services in the home.
"The last thing we want to do is deny children access to services because of an administrative barrier," he said.
In some cases, families simply can’t get anyone to answer phone calls.
Caroline Song’s son, Parker, was diagnosed with autism at 17 months. After his doctor gave him a referral to the Regional Center of the East Bay, Song, 47, said she called almost every day. It took two months before she got her first call back, and nearly a year before Parker got services. During that time, she watched her son’s language abilities slip away.
"The diagnosis early is great, but it's useless if you can’t get services early," she said.
Lisa Kleinbub, the center's executive director, said procedures have since been put in place to ensure all families receive a return phone call within two days.
A screening problem
In the end, the biggest barrier to children getting early intervention services might be that no one refers them.
Song knows this firsthand. She works as a pediatrician at Kaiser Permanente Walnut Creek Medical Center. Before Parker received his diagnosis, she knew little about regional center services and often waited too long before sending her young patients to the regional center for evaluation.
Many parents don’t want to hear that their children are facing developmental problems, Song said. "They get angry. Part of me was a little hesitant."
Now she refers them early. To help them understand, she shared her story.
Less than three percent of the state's infants and toddlers are enrolled in Early Start. Advocates say that low rate does not reflect the level of need, but rather the fact that many young children with developmental delays never get screened.
"That's where they're being missed," said Elizabeth Villanueva, who contracts with South Central Los Angeles Regional Center to provide therapies to Spanish-speaking clients. "I hear over and over from my families: 'I told the doctor that she doesn't talk.'" The frequent response: "Don't worry, she'll talk later."
Aggravating the problem: between 2008 and 2013, the state restricted eligibility for Early Start, no longer providing services to children with more mild delays. In 2013, the legislature voted to broaden eligibility to pre-recession levels. But it has taken years for pediatricians to be aware that the services are again available, said Kleinbub, of the Regional Center of the East Bay.
Federal law requires schools and regional centers to identify all children with disabilities, including those they are not yet serving. Nicole Marquez, a mother in Diamond Bar, east of Los Angeles, is visiting with state legislators, asking them to strengthen the state's implementation of those laws.
Marquez said her son, Phillip, was diagnosed with a severe seizure disorder before he was 2. He was delayed crawling, talking, standing and walking, but didn't receive regional center services until he was 8, Marquez said. Today, he suffers from "extreme learning disabilities," she said.
"He got left behind and we're paying for it dearly now," she said.
Poulsen, the chair of the state's Interagency Coordinating Council for Early Intervention characterizes the services available through Early Start as "a miracle" compared to what was available before early intervention received federal funding in 1986.
But she remains concerned that children of color, especially those whose parents are non-English speakers, undocumented, homeless or American Indian – are not getting the same services as white, more affluent children.
Early Start is only one small component of a much larger regional center system, and most advocates agree – and data show – that disparities in the system are less pronounced in Early Start than they are for older children. Still, centers statewide authorized about 12 percent more per capita for white infants and toddlers being served at home compared with black children and 8 percent more for white children compared with Hispanic children, according to an analysis of Capra's data.
Cindy Rodas, an education advocate with the Alliance for Children's Rights, a non-profit advocacy group that represents the interests of foster children, said many Spanish-speaking families believe that they cannot push back against people in positions of authority, or are afraid to speak out.
"These are the kids that need to get the most help," said Rodas. “They're already getting the short end of the stick in so many aspects of their lives. But if we can get a little footprint here, we can make such a huge impact. It can be life-changing moving forward."
Jocelyn Wiener is a writer for the Center for Health Reporting at the USC Schaeffer Center for Health Policy & Economics. Reporting for this story was supported by a grant from First 5 LA and by USC Annenberg's Center for Health Journalism.