MERIDEN — Inside the “sensory room” at Hanover Elementary School, a group of students with Autism Spectrum Disorder gathers around in a circle and gleefully bounces on yoga balls as Taylor Swift’s “Shake It Off” plays in the background.
After the warmup is over, the students break off to use equipment and instruments designed to give them a calming, midday “reset.”
“A lot of them can’t regulate their bodies themselves – they can’t take sensory information and process it correctly, so it’s hard for them to focus and learn,” said Kathy Romania, the school district’s head of occupational therapy. “By doing this, it gets them that sensory input in a way so that they’re regulated, and they can listen and pay attention longer.”
Eight-year-old Ashley Laboy goes straight for a swing that teachers say helps calm and orient students by activating their sense of balance. Ten-year-old Nowell Mas-Rivera continues to bounce on a yoga ball to the beat of his favorite music — heavy metal.
“We let him pick which songs he wants, sometimes it’s Kidz Bop, sometimes it’s heavy metal,” behavior technician Nicole Ritchie says as Mas-Rivera plays the air drums to the music.
“I think he likes the bass so he can bounce to it,” she said.
Across the room, 8-year-old Nayelli Padua gazes at a glass bubble machine giving off calming bubble and light patterns, and 7-year-old Branyoriel Rivera-Torres uses his tactile senses while digging through a bin of kinetic sand to find multicolor beads, or “buried treasure.”
“It’s interesting because the kids know what they need,” Hanover Principal Jennifer Kelley said. “Branyoriel was back there in the sand because he needed that tactile feel, and you know what you need, so that’s what they naturally gravitate to.”
The sensory room reflects how local school districts have adapted and expanded services in recent years to meet the needs of students on the autism spectrum. Romania and her sister, Heather McDonnell, the district’s lead physical therapist, founded the sensory room five years ago as a therapeutic space, converted from a kindergarten classroom, in response to steady increases in students with autism. Since then, “we’ve had people from all over the world come to see our room so they can create something similar,” according to Romania.
“We said, ‘What is a need that these students have, this population that we have?’” Kelley said.
The number of students diagnosed with autism in local school districts — Meriden, Wallingford, Southington, and Cheshire — has more than doubled collectively over the past decade — from 228 students in all four districts during the 2007-08 school year to 522 in 2018-19, according to numbers districts submit to the state Department of Education on their annual Profile and Performance Report.
“Even people who believe they are familiar with education are surprised by it,” Southington Superintendent of Schools Tim Connellan said about the trend.
From the 2008 to 2019 school years, Connellan’s district saw an increase of 57 students with autism to 121. In that time, Meriden’s autism population increased from 64 to 203, Wallingford’s increased from 67 to 119, and Cheshire’s increased from 40 to 79.
The local trends reflect larger state and national upswings in autism prevalence, Meriden’s special education director, Patricia Sullivan-Kowalski, said. According to the latest analysis done by the Centers for Disease Control and Prevention in 2018, one in every 59 children born in the U.S. was identified with Autism Spectrum Disorder, or 1.7 percent of all children. That rate has proliferated over the years, from 1 in every 150 children, or .66 percent, estimated by the CDC in 2000.
“I’ll be at the gym or in yoga class and people will ask what I do,” said Leslie Macnab, director of the nonprofit Autism Services & Resources Connecticut, “and when I tell them, never once have I not heard something like, ‘Oh my son has autism’ or ‘My nephew has autism.’ Everybody knows someone that’s been affected.”
‘This is the status’
Autism Spectrum Disorder is a neurodevelopmental disability that can cause a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication. Characteristics and challenges of people on the spectrum can vary greatly from person to person, and because autism is a spectrum, individuals on different ends of the spectrum can be very different.
“It’s such a difference from one extreme to another, it’s almost like it’s a completely different disability. One can look almost nothing like the other,” said David Kearon, director of adult services for Autism Speaks, the country’s largest autism advocacy organization.
Research to date has not been able to identify the causes of autism, according to the CDC, but experts believe there are likely many different factors that make a child more susceptible, including environmental, biological and genetic factors.
While a number of factors could be contributing, the consensus in the medical and education communities is that improvements in detection and awareness are leading to more diagnoses in some cases. Autism stands out among disabilities for its broad spectrum of behaviors and symptoms, which parents and professionals are developing a keener eye for, school administrators and medical professionals said.
“We’re getting a lot better at picking up on the different behaviors and signs,” said Dr. Sara Schoonover, director of the Wheeler Clinic’s Autism Diagnostic Evaluation Program.
It’s also possible symptoms of autism may be more drawn out by increasing academic and social pressures placed on young children, said Dr. Jim Loomis, a child and family psychologist, the director of adult services at the Center for Children with Special Needs in Glastonbury and a member of the state’s Autism Spectrum Disorder Advisory Council.
“There are a whole lot more electronics, organized sports, and group activities, and less free play time, ” Loomis said about the life of an average child today. “There’s a greater demand to be able to process information, to be able to function and socialize within a group. In the past, it may have been that kids with autism were there, but it was just easier to grow up without these kinds of skills that are hard with children with autism… Kids with autism do fine with unstructured free play, but if they’re in a group and there are social demands and they have to follow certain rules, they don’t do as well.”
While it’s possible “autism has always been there and now we’re just finding it,” Loomis said it’s also possible other factors, including environmental and nutritional changes, could be altering “genetic codes” over time to make children more susceptible. Most scientists agree genes are one of the risk factors that can make a person more likely to develop ASD, and the developmental disorder has been found to occur more often in people who have certain genetic or chromosomal conditions, according to the CDC. Autism occurs in all racial, ethnic, and socioeconomic groups, but is about 4 times more common among boys than among girls, the CDC says.
There has been.concern among some parents about a possible link between childhood vaccinations and autism, however, that theory, Loomis said, has been ruled out by extensive research.
Loomis is optimistic the current trends will eventually taper off down the road, but adds, “if they do keep going up, then I think we have to look more and more” at environmental and nutritional causes.
“Since no one really has been able to identify the cause,” Southington’s superintendent Connellan said, “we’re faced with looking at the situation from the point of view of, ‘This is the status.’”
As districts continue to take in more students with disabilities, not only autism but other disabilities too, they’re being challenged with servicing these students within their operating budgets, administrators said.
“I think across Connecticut what you’re seeing is annually special education costs are taking up a greater percentage of the budget which means that special education costs are outpacing other costs,” Cheshire Superintendent of Schools Jeff Solan said. “You’re continually shifting funding for other things to cover special education. And if you ask superintendents around Connecticut they’ll tell you that that’s a (point of concern).”
In its 2017-18 school budget, Cheshire spent just over $17 million on special education, or 24.2 percent of its total $70.3 million education budget. A decade prior in 2007-08, the district spent $12.1 million on special education, 22 percent of overall spending.
Southington’s special education spending also rose in that time from $17.2 million to $27 million, and Wallingford’s jumped from $18.3 million to $25.7 million.
“It’s really important for people to understand these are all things that we have to do for children, we want to do for children. These are some of our most vulnerable students,” Connellan said about special education. “It’s expensive, but that’s just how it is right now.”
Unlike surrounding districts, Meriden has seen small decreases in its special education spending over the last five years following a period of increases from 2007 to 2012. Since 2012, Meriden’s special education budget has decreased from $31.2 million to $29.4 million in 2017-18. The city achieved this due in large part by building up its “continuum” of in-district services to reduce the number of students it outplaces to other schools.
In cases in which a school system can’t meet a student’s needs in-district, the school system sends the student to another public or private school and pays all costs for tuition and transportation. On average, area administrators said it costs between $80,000 and $180,000 to outplace a single student each school year, which adds up to millions of dollars annually.
“The best way to reduce costs is to create situations where you can program effectively and efficiently for students in-district, then you don’t have to worry about out-of-district placements,” Connellan said.
In some cases boosting in-house programs can mean finding the necessary space or hiring more support staff to run and monitor the programs — behavior technicians, social workers, school psychologists, speech and language pathologists, and board-certified behavior analysts. In other cases, schools are able to train existing staff on how to better meet the needs of students with disabilities.
Aimee Turner, Wallingford’s head of special education, said the training that staff receives on how to better handle students with autism also prepares them to deal with general education students who may experience anxiety or social phobia, for example.
“It’s really benefited everyone, not just students on the spectrum,” she said.
While building up in-house special education resources comes at a cost, administrators said it’s much cheaper than outplacing.
Southington, for instance, recently conducted a cost analysis which found that new special education programs the district has created in recent years save roughly $3 million annually. The programs, which cost about $2 million annually, have allowed Southington to keep 41 students in-district who would otherwise have needed to be outplaced, according to Connellan. At an average outplacement cost per student of $130,000, it would cost roughly $5.3 million to outplace those 41 students, according to Connellan.
“That’s over $5 million that we would have to have in our operating budget right now just for those out-of-district costs,” Connellan said.
Beyond financial advantages, administrators say keeping students in-district also leads to better outcomes, partly because districts have more “ownership” over services.
“Because they’re our kids, we own it, and we have a more vested interest,” said Kelley, the Hanover principal.
Years back, Meriden hired outside agencies to audit its internal special education operations and outplacement facilities. The audit found keeping elementary-age students in-district led to better outcomes for students than outplacement.
“We learned that when elementary-age students remain in the district and experience success and connections to the school and greater community are developed, the need for outplacements greatly diminishes and the district benefits from the savings year after year.,” Sullivan-Kowalski, Meriden Superintendent Mark Benigni, and Assistant Superintendent Mike Grove wrote in a 2017 article published in School Business Affairs, a trade magazine.
The IDEA legislation passed in 1975 stipulates students with disabilities should learn in the “least restrictive environment,” meaning that, to the extent possible, students with disabilities be educated in regular classrooms and included with their non-disabled peers.
“Putting students on a bus 45 minutes to somewhere is something we try to avoid, especially with students who have special needs,” Solan said.
Staying in-district is particularly advantageous for students with autism, who often struggle to make and maintain social connections.
“When you outplace a student, they don’t have the opportunity to make those connections because they’re not with their peers and they’re not in the community,” Turner said.
With the autism population expected to continue increasing in the coming years, some districts are beginning to plan ahead. In Southington, Connellan’s budget proposal includes a request to create a new program intended to service future influxes of students on the spectrum. The program is estimated to cost $350,000 annually to run, most of which would go to personnel, Connellan said.
“It’s going to give us the flexibility to deal with increases in numbers of students as we get them because right now, knowing what we know about the students that’ll be coming to us during the 2021 school year, we’d have to add about ($230,000 to $250,000) in personnel alone just to meet the needs of those students that we know are coming.”
Among the seven categories of disabilities that school districts are required to tally and report to the state each year, autism across all four school districts has seen the largest rise over the past decade and has been a driver of special education costs, according to administrators. But other disabilities have also been on the rise in some districts, including learning disabilities and “other health impairments,” which include attention deficit disorder.
State, federal aid fall short
As the cost to educate special education children has dramatically risen over decades, administrators say the state and federal governments have effectively shifted more of that cost onto local districts by not increasing their contributions accordingly and failing to provide once-promised funding levels.
When the federal IDEA Act was originally enacted in 1975 as the Education for all Handicapped Children Act, Congress pledged to fund 40 percent of the additional costs to educate special education students. In other words, if a school district spends $10,000 to educate a general education student on average and $25,000 to educate special education students, the federal government promised to cover 40 percent of that $15,000 difference, or $6,000. The grants are made to the states, and the states then doll the grants out to local school districts.
While the[1975 law laid out how much funding was authorized to be appropriated, the 40 percent figure only serves as a guideline, not a guarantee, and since the legislation passed 45 years ago, Congress has never come close to appropriating 40 percent funding, according to a 2018 report published by the National Council on Disability (NCD). From 1988 to 2018, the federal government only once provided more than 18 percent funding for “Part B, Section 611” of IDEA, which provides funds for children ages three to 21, according to the report, titled “Broken Promises: The Underfunding of IDEA.”
In Fiscal Year 2019, Congress provided funding for 14.3 percent of additional special education costs under Part B of IDEA, according to an August 2019 report published by the Congressional Research Service
“That’s wrong,” Connellan said about the underfunding of IDEA. “That’s a promise that was made and was broken.”
Over the decades, there are many pushes by educators and advocates to fully fund IDEA, including in 2002, when a coalition comprised of nine nonprofit education associations, the “IDEA Full Funding Coalition,” developed a proposal to increase IDEA funding from 17 percent to 40 percent over six years.
Also in 2002, President George W. Bush’s Commission on Excellence in Special Education issued a report in which one of its key recommendations was increasing IDEA funding. The commission’s recommendations, however, were largely ignored when Congress passed the most recent amendment and reauthorization of IDEA in 2004.
The push to fully fund IDEA has also received support by members of Congress over the years, as a bill to fully fund IDEA has been introduced in nearly every Congressional session. Despite IDEA funding increases being “largely a bipartisan issue,” significant increases have remained “elusive,” the NCD’s report said.
The most recent push to increase IDEA funding came last year when a group of five Republicans and five Democrats in Congress introduced a bipartisan bill that sought to fully fund IDEA at 40 percent beginning in Fiscal Year 2029 by incrementally increasing appropriations from around $14 billion to $43 million. No vote or discussion has been taken yet on legislation, which was referred to the House Committee on Education and Labor last March.
In addition to federal funds, the state government also provides financial support for special education, primarily through two ways. One way is through a factor that is included in the formula used to determine each community’s annual Educational Cost Sharing Grant total, which Connellan said is a “complex” and “not easily understood” formula. The other way is through the state’s Special Education Excess Cost Grant, which offers districts with relief in educating its highest-cost students – a financial safety net of sorts.
In cases in which a special education student costs more than 4.5 times their district’s per-pupil average, the state under the grant program is supposed to reimburse the district 100 percent for every dollar they spend above that threshold, referred to as “the basic contribution.” For instance, Connellan said Southington spends about $15,000 per student on average, so their “basic contribution” would be around $68,000. In that case, the state is supposed to reimburse Southington for every dollar spent on a student after $68,000.
In recent years, however, the legislature has put a “cap” on how much it appropriates for the grant program, allowing the reimbursement rate to fall around 65 to 70 percent and requiring districts to pick up the rest of the costs by eating into their general education budgets or raising taxes.
“When you then multiply that lost reimbursement times the number of students for whose expenditures the district is eligible for reimbursement, it can add up to hundreds of thousands of dollars that are lost reimbursement to the district,” Connellan said.
Another issue superintendents raised in talking about the challenges of controlling special education spending is that Connecticut is one of about five states that places the “burden of proof” is on districts in cases where there is a dispute between a school and family over what services disabled students should receive.
In 2006, the U.S. Supreme Court ruled parents, not school districts, are required to prove that a student’s Individualized Education Plan doesn’t meet a child’s needs. This ruling, however, did not overturn state laws placing the burden on districts, and Connecticut is one of about five states that currently requires districts to prove that an IEP is satisfactory if a family appeals and the case goes through a due process hearing. The issue, which both schools and parent advocates consider controversial, has been debated repeatedly over the years.
Parent advocates contend that, because IDEA also mandates schools to provide a “free and appropriate” education, the burden of proof should be on them to prove they’re fulfilling that mandate.
Turner said that while this regulation doesn’t change or influence the services a district recommends for a child, it makes it hard for school districts to defend their position in case of a dispute.
“To always put the burden of proof on school districts,” Connellan said, “means the school district is always on the defensive, and it makes it very, very expensive for school districts to take the chance on defending their position in due process hearings.”
Districts are usually inclined to settle cases before they go to court, Connellan said, because it can cost $50,000 to $75,000 in legal fees and a judge may also order the district to pay the other side’s legal fees too.
But parent advocates say due process rarely comes into play and doesn’t have a huge, persistent impact on special education costs for districts. Out of the 78,000 children receiving special education services statewide, only around 250 appeals are filed each year.