Why it costs a fortune to get the best test for disabilities like ADHD, autism, dyslexia

When Ann Civitareale’s father passed away in 2009, she little fathomed that she would spend thousands of her inheritance on medical and educational testing for her two sons.

Yet the boys, 12 and 14, have struggled with multiple disabilities — including developmental and speech delays and profound challenges learning to read — that she did not feel the schools could sufficiently diagnose.

“Usually when you get a report back from the school, it’s just a few pages, not a comprehensive report,” she says. “I’ve always gotten them more than what the school offers. … I want them to have the best possible start in life.”

Over the last decade, Civitareale, who lives in the Boston suburb of Medford, estimates she has spent upwards of $20,000 on the independent testing. Each of her sons has had five evaluations each, with insurance covering the base rate of $5,000. Yet Civitareale has paid an average of $2,500 out of pocket each time for “extras” not covered by her family’s already expensive insurance, including classroom observations and expert testimony at school meetings. One dyslexia evaluation with an expert who didn’t accept insurance cost her family $5,000 alone.

Costly independent evaluations have come to play an outsize role in the diagnosis and treatment of numerous disabilities, from attention deficit hyperactivity disorder to autism to dyslexia. Depending on the scope, the evaluations can involve up to two days of testing, interviews and observation with up to a dozen doctors and experts. And that’s even for disabilities that are relatively common: An estimated 9% of American kids have ADHD. Dyslexia hinders a person’s ability to read words correctly and efficiently, with between 5% and 15% of the population likely affected.

The costs can make it more complicated and expensive for whole swaths of Americans — particularly families with lower incomes and those living in rural areas — to access desperately needed special education services.

“Dyslexia is not for poor kids, because you don’t get the diagnosis. You don’t get the treatment,” says Maureen Ronayne, another Medford parent. She and her husband, a carpenter, have struggled to afford repeated independent evaluations for two of their six children. She said there’s an oft-recited maxim: “This is a rich man’s game.”

Two boys with the same disability tried: The rich student got it quickly. The poor student did not.

In some school districts, a specific diagnosis — and even the first-hand testimony of a neuropsychologist — can be crucial for accessing the best services. Those can range from occupational and speech therapy to small group time with a teacher to a publicly funded spot in a specialized private school.

The system designed to support struggling students is broken — in ways that extend far beyond evaluations, says Nadine Gaab, an associate professor and reading expert at the Harvard Graduate School of Education.

“Why are we not making assessments in the schools better and more comprehensive?” Speaking of reading in particular, she says: “We need to move from a reactive model to a proactive model, where we are trying to find the people who will most likely develop problems and help them before they struggle so much.”

What is a neuropsychological test?

The independent evaluations many families find so costly and hard to access originated in a well-intended provision of federal law: the guarantee that families have the right to a second opinion.

Thousands of families each year seek out a medical exam known as a neuropsych, which looks closely at the connection between brain function and learning, and has become a critical part of diagnosing some disabilities. With many neuropsychologists temporarily suspending in-person appointments during the first year of the pandemic, and countless students struggling more than ever due to school shutdowns, the bottleneck has worsened in many communities.

Any students with more “complex” learning disabilities or developmental disabilities could benefit from a neuropysch, says Katherine Gamble, president of the Massachusetts Neuropsychological Society. “If anyone is on the autism spectrum, there is no question those kids need it.”

A limited number of school districts have neuropsychologists on staff or on contract, but that’s more the exception than the rule, Gamble says. “I don’t think they have the funding,” she says. Neuropsychologists “aren’t needed all the time, and there’s this question: ‘Why would we spend this money on someone who doesn’t need to see all of our kids?’”

Many families pay out of pocket for the exam — and its many “add ons.” Some, like Civitareale, a stay-at-home parent whose husband is a kitchen supervisor at a hospital, seek out deluxe health insurance plans partially because they cover neuropsych exams. Her family’s cost $1,800 a month for several years.

Others cobble together whatever money they can. One Boston parent said she relied on relatives who cashed in retirement savings to fund her daughter’s $4,200 independent evaluation for dyslexia and other disabilities.

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Federal law requires school districts to foot the bill for independent evaluations if a family can prove one is warranted. “That’s a battle school districts do often win because the parent has to show that the evaluation was flawed,” wrote Ellen Saideman, an attorney based in Rhode Island who focuses on special education.

In Massachusetts, the state actually requires districts to pay for independent evaluations for lower-income families regardless — yet at a rate well below what most evaluators typically charge. Moreover, most families don’t realize that’s an option unless they are working with an advocate or lawyer.

“It’s asking parents to know a lot,” says Cassandra Archie, founder and CEO at Advocates for Educational Equity & Excellence. “They don’t have the time; they don’t have the experience in this space; they don’t have the language. It is intimidating.” Many parents of color also worry about stigma and prejudice from a potential disability diagnosis, Archie adds, and may hesitate to seek outside testing for that reason.

Even when parents do know, they can encounter years-long wait lists at providers willing to accept a payment well below market rate. In Massachusetts, for instance, a neuropsych often costs at least $5,000, yet the state reimbursement rate typically works out to less than $3,000 – even after a recent increase, according to Helene Busby, an attorney at Community Legal Aid in Springfield, who works on a lot of special education cases.

“Ninety-nine percent of the work around independent evaluations involves talking on the phone to a million people, asking who has an opening in the shortest amount of time, will do a good job and will take the state rate,” says Elizabeth McIntyre, senior counsel at the EdLaw Project in Boston, which provides advocacy for underserved student communities in Massachusetts.

Sometimes districts put up hurdles to that effort — whether by accident or intent. Two Massachusetts parents interviewed for this piece said their school district’s list of “approved” independent evaluators included psychologists who actually weren’t licensed to work in the state. And Ronayne and Gamble say the Medford school district at one point asked neuropsychologists to provide not only a resume, tax form, professional license and liability insurance, but also to drive to Medford for a criminal records check and get fingerprinted. “I believe that this is a way to slow the (independent evaluations) down,” Ronayne says.

Those requirements rarely slowed down the process, says Joan Bowen, director of pupil services for Medford Public Schools. (The requirements, Bowen said, were instituted before she assumed her current position.) Yet earlier this school year, the district changed course after conversations with attorneys and other special education directors. “We stopped it right then and there,” she says.

The district’s biggest challenge, she said, has been finding evaluators who take the state rate.

It’s not that school districts never diagnose learning disabilities, but their evaluations are typically less extensive than an independent neuropsych exam.

Apart from the capacity issues highlighted by Gamble, school districts may fear, sometimes legitimately, that a neuropsychologist will ask for services they are unable to provide. That can cause a family to ask to send their child to a private school with better services at the school district’s expense, a right families have under federal law.

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“Not unlike most things in life, it boils down to money,” says Tiffany Hogan, a professor and director of the Speech & Language Literacy Lab at the MGH Institute of Health Professions.

She completely understands the frustration of many parents. Still, she says, “sometimes the expectations parents have around the progress kids should make in school is too high. Schools have to work under resource limitations. … The school is sometimes left in the position of deciding who to give treatment to — and who not to.”

A year and a half for answers

For families who don’t have the money to pay out of pocket for an independent evaluation, the wait for a publicly-funded one can be excruciating. Busby worked recently with one financially struggling mother in the Springfield area who realized in the fall of 2019 she wanted a fresh perspective on her son’s disabilities and classroom needs. Over several years, the school district’s evaluations had focused much more heavily on behavioral issues than academic ones. Yet the child’s mother, Sara, who asked to be identified by her first name to protect her son’s privacy, wanted desperately to understand how the boy, now 11, could “learn better.”

It took a year and a half to get some answers.

Since the family could not afford to pay for independent testing on their own, they needed to find an evaluator who would accept the public rate. They quickly found someone local with availability that September, according to Busby. But before the family could schedule an appointment, the woman wrote to say she was taking an indefinite leave of absence from her practice. Over the course of the fall, Busby and an intern reached out to dozens of potential evaluators; none of them took the state rate or had openings within the next three months.

Finally, in early 2020, Busby found a provider in Amherst, less than an hour away, who would accept payment only modestly above the state rate. But before the school district and the center finalized the contract, COVID-19 shut down in-person evaluations. In late September 2020, the Amherst center still had not resumed bringing in patients. Busby began the hunt again. The school district balked at one provider who charged well above the state rate, according to Busby; but in early 2021, after repeated inquiries from Busby, school officials offered up an alternative. In February, the pre-teen traveled to the Boston area for two days of psychological evaluations, including a thorough reading assessment. In March, a doctor followed up by observing the boy at school.

The diagnosis — dyslexia, plus ADHD and disruptive mood disorder — enabled Sara’s son to receive much more intensive and tailored reading supports than he had previously, including small-group instruction in a science-based reading program.

For Sara, the long and at times frustrating wait for an independent evaluation was worth it.

“It was such a relief to finally have it put into his (individual education plan) that his issues are not just behavioral but about learning as well,” Sara says. “It confirmed to me that I wasn’t wrong as a mom.”

Her son’s reading struggles are hardly over, but Sara says her son is willing to spend more time with books at home. “There is less of a fight,” she says.

Another family's fight for special ed services: Their son had autism. Mom didn't speak English well. Then COVID-19 put school online.

It shouldn’t take families thousands of dollars — or the resourcefulness and tenacity of a team of lawyers — to secure a disability diagnosis that might bring a child more educational support, many experts say. “What’s happening is that we are withholding the necessary treatments as if they are chemotherapy, until (families) can absolutely prove that they are disabled,” says Steve Dykstra, a Milwaukee-based youth psychologist who serves as an advisor to the International Foundation for Effective Reading Instruction. “We should be treating it like vitamins, like brushing your teeth.”

One necessary change is to work toward better screening for all students so independent evaluations become far less important, Gaab says. That would enable students struggling with reading, including those who might not meet the diagnostic criteria of dyslexia, to get help earlier. “The reading scores in this country haven’t changed substantially since 1992,” Gaab says. “If you look at all the policy implementations, none of this has moved the needle. What may move the needle is moving from a reactive to a proactive model.”

Many families have learned the hard way that even a costly diagnosis doesn’t necessarily translate into appropriate educational supports.

“There are a lot of times the neuropsych will recommend things,” says Civitareale, one of the Medford parents, “and the school will say, ‘We don’t agree with that. We don’t want to put this accommodation in.’”

For instance, one evaluator recommended Civitareale’s older son, then in third grade, receive a specialized reading program. The district disagreed, maintaining its own reading program was sufficient.

So the family opted to hire a private tutor to work with the child. Like the independent evaluations, the expenses quickly added up, yet Civitareale didn’t feel like she had any other choice. “They are already behind,” she says, “and I don’t want them to fall further behind.”

Sarah Carr, an independent journalist, is examining gaps in access to reading supports during a nine-month O’Brien Fellowship in Public Service Journalism at Marquette University. Lelah Byron and Aimee Galaszewski, who are students at Marquette, contributed reporting.

This article originally appeared on USA TODAY: ADHD, autism test: Why neuropsych for special education costs so much