Why this mom pulled her autistic son from Guiding Hands school in El Dorado Hills
Neda Raheem is a 34-year-old mother of twin boys and a physician assistant. Her boys seemed normal and healthy at first, but when they were 14 months old, doctors sensed they might have a condition.
“They didn’t have any problems hearing but a lot of problems with movement,” Raheem said. “They didn’t like to be in a swing and they didn’t like their hands, especially, to be touched.”
The boys were diagnosed with autism and cerebral palsy. Three months into preschool, the family moved from West Sacramento to Elk Grove in part because the schools offer more options for special education students.
It’s the type of decision parents across the Central Valley are facing with increasing regularity, as autism diagnoses soar and parents seek classrooms with better options for their children.
Special education enrollment has surged in the last decade, with more than 96,000 students pouring into school districts across the state, according to data from the California Department of Education.
One of the drivers has been a marked increase in students with autism and other behavioral delays, a Bee analysis shows. At the same time, the number of students with other disabilities grew modestly or decreased between the 2009 and 2018 school years.
Although the trend is undeniable, no one can say exactly why it’s happening.
The answer, according to researchers, social service providers and education administrators could be wrapped up in a number of overlapping factors. Outpacing population growth, the surge has put pressure on some school district budgets and administrative support systems in the Central Valley and beyond.
State and federal funding have not kept up with the shift in special education enrollment, forcing school districts from Sacramento to Fresno to dig deeper into their general funds to pay as the number of students swells.
“If you look at the population of kids that are classified as special ed, that number hasn’t really changed,” said Erika Hoffman, a lobbyist for the California School Boards Association. “It’s the concentration of students within that number and that’s where it’s affected a lot of schools because services for students with autism can be very expensive.”
The increased prevalence of autism has been a medical mystery for years.
Awareness has grown, experts say. Teachers are trained to recognize the disorder. And in 2013, the medical definition of autism was changed, grouping a number of conditions like Asperger’s syndrome and pervasive development disorder under the umbrella of autism.
Recent estimates from the Centers for Disease Control and Prevention said the prevalence of autism spectrum disorder jumped 16 percent between 2012 and 2014. Although the medical and education definitions are not the same, California schools saw an 18 percent increase in autism enrollment for the same period.
But organizations like the MIND Institute at UC Davis have been working to bring the two definitions closer together by training teachers and other professionals to identify the symptoms.
“The increase isn’t just in California but it is nationwide, probably worldwide,” said Aubyn Stahmer, who oversees community treatment research at the MIND Institute. “The diagnostic definitions have broadened a little bit and that explains some of it and awareness has really increased quite a bit.”
In requiring school districts to offer special education, the federal government agreed to pay about 40 percent of the per student cost. Hoffman said the reality has often been much less, between 12 and 15 percent of the cost.
The state chips in for 30 percent and school districts are on the hook for the rest.
In his first budget, Gov. Gavin Newsom acknowledged the shortcomings in special education funding and directed $576 million to schools — about one-third of which is a one-time payment, according to a released spending plan. It’s unclear, however, if the proposed budget for special education would be consequential in closing the funding gap.
In the Fresno Unified School District, special education accounts for about 14 percent of its budget. In the last decade, state education data shows enrollment jumped by 6 percent but the share of students with autism climbed nearly three-fold.
Susan Kalpakoff, Fresno Unified’s special education program manager, said students are not necessarily flocking to the district from other places but a lot of them are younger than 5 years old.
“Are more resources required or needed for our students with autism? The answer is yes,” Kalpakoff said. “When we look at all the eligibilities of students, there are groups of (disabilities) — autism being one — that require more specialized understanding and training.”
Kalpakoff sees an upside in the increase. If there are more students being diagnosed, she said it shows the school system must be doing a good job identifying children in need.
Officials with the Elk Grove Unified School District, the fifth largest in the state, say they’ve seen more parents arrive with 3- to 5-year-old children who have already been diagnosed in another school district. “Our budget is impacted by the increase in 3- and 4-year-olds because there is no funding for that early education age-group, so we have to look at re-prioritizing programs,” said district spokeswoman Xanthi Pinkerton.
“We are having to do more to recruit teachers, and in some cases, we are helping to cover the cost of credentialing current staff interested in becoming special education teachers.”
Parents will move if a district offers the right services and some cater to those students’ needs better than others, said Dave Gordon, superintendent of the Sacramento County Office of Education.
Research has shown early intervention is more likely to improve a child’s outcomes, so it’s likely parents will gravitate to those places, Gordon said. “In Elk Grove, I know they’ve set up a very broad-based set of services for preschool age (students), which is not as common.”
While Raheem’s family moved into Elk Grove for help from the schools, her twins’ conditions are more complicated than most. When the twins were diagnosed, the doctor told Raheem their motor functions were lagging, further holding them back. They were also diagnosed with cerebral palsy.
Even with the abundant programs, Raheem disagreed with some of the school’s treatment plans. She placed the boys in full-time behavioral therapy late last year to better address the needs of the overlapping diagnoses.
“I could not get what I felt my kids needed the most,” Raheem said, “so I had to make that decision and take them out of the public school system.”