For Some Washington Students With Special Needs, Diagnosis Is Too Late, Help Is Too Little
By Katherine Long / The Seattle Times
Something is not right.
When Luckisha Phillips' son Jayden picked up a pencil in kindergarten, his letters often came out backward and inverted, so illegible that his mother thought something was wrong with his vision.
Handed a set of crayons, Ammerine Dellenbaugh's bright, chatty son Creede refused to use them to draw or write. Instead, he'd line them up by color, or just scribble.
As 6-year-olds, Stacey Vandell's twins, Jake and Ryan, couldn't remember their ABCs, didn't know why the days were different, and couldn't grasp the concept of time.
Over and over, these women found themselves saying the same thing to teachers and principals:
But when it came to putting a label on these challenges -- to getting the type of educational testing that could open the door to more appropriate schooling -- they felt like they were on their own.
They hired private neuropsychologists, speech and vision experts. They spent thousands of dollars to diagnose learning disabilities they say their schools should have identified much earlier.
Educators have long known that dyslexia and other learning disabilities can have devastating impacts for students if not diagnosed and addressed early. In Washington, nearly 48,000 children in 2018 were identified as having a "specific learning disability," which includes dyslexia, dyscalculia and dysgraphia. It is the most common category of learning disability.
Those numbers likely understate the problem because many children aren't diagnosed. It's estimated that as many as one in five children have some degree of dyslexia.
Yet most Washington districts decide if a child is eligible for services using a model that is not supported by research.
The Seattle Times spoke to dozens of parents who hit brick walls when trying to get the help they needed for their children. Their experiences point to a pervasive problem in Washington: Schools are failing children who learn differently by taking too long to address problems.
Their complaints have common themes:
* Teachers assured them their children would grow out of the problem.
* Schools were reluctant to test until students started failing, forcing many parents to pay for private testing.
* Interventions, especially for reading, were often too little and too late.
Washington ranks poorly on federal special-education reports because of its low student outcomes and segregated classrooms. It's hard to know how much of the problem is due to a lack of diagnostic testing, but even state officials acknowledge that they're not doing enough to identify reading problems like dyslexia, which affects as many as one in five children.
That problem is compounded by the fact that Washington -- like most states -- has a shortage of both special-education teachers and school psychologists. And although the Legislature boosted special-education funding by millions of dollars this year, it came up far short of what advocates wanted.
How special education works
Special education has a complex language all its own, girded by federal statutes that can feel calculated to confuse as much as help parents of children like Jayden, Creede, Jake and Ryan.
The federal Individuals with Disabilities Education Act (IDEA) gives a child with a disability an explicit right to schooling that suits their needs, but not every child who has a disability will qualify for help. The disability has to affect educational performance, and overcoming the disability has to require specially designed instruction, said Glenna Gallo, assistant superintendent of special education for Washington's Superintendent of Public Instruction.
The law recognizes 13 categories of disabilities. Some are caught early, often by a doctor.
Others are invisible, apparent only after a child with average or above-average intellectual ability falters in the classroom; they include difficulties with reading (dyslexia), calculations (dyscalculia) and writing (dysgraphia).
Luckisha Phillips and her husband, John, assumed their school would want to investigate why Jayden couldn't remember his ABCs or write his letters. Instead, she says, they were only interested in whether he was legally entitled to help.
That's not surprising -- that's what the federal law requires.
Most Washington school districts identify students with these types of learning disabilities through an intellectual ability test, or IQ test. This method, known as the "discrepancy model," measures whether there is a substantial difference between a student's intellectual ability and scores in one or more academic areas, such as reading. In other words, a student must reach a certain level of failure before qualifying for help.
But research has debunked this method as a poor model with no basis in science, said Meghan Whittaker, director of policy for the National Center for Learning Disabilities. Whittaker called it a "wait-to-fail" approach.
Aira Jackson, director of English language arts for the state superintendent's office, acknowledges that research calls into question the validity of the discrepancy model.
Yet most districts in Washington, including Seattle, use it. Why?
The discrepancy model is still allowed by federal law, and it is relatively easy to administer. It serves as a bright-line test that a school can use to approve or deny special education, Whittaker said.
OSPI is currently examining the research, Jackson said, and may recommend that the eligibility criteria be changed.
Some districts have replaced or supplemented it with a newer approach, "response to intervention," that doesn't require a formal evaluation before a student gets help. A teacher who sees a child struggling can simply intervene -- for example, with a reading specialist's help. The student receives a referral for testing if the intervention doesn't work.
'Your son has dyslexia'
At the end of Jayden's first year of school, educators recommended that he repeat kindergarten. Phillips went along, assuming they knew best. But by the end of his second try at kindergarten, little had changed.
In her words: "It was an unproductive year."
Then his teachers began calling him out for being distracted and avoiding classwork. The feeling was mutual: Jayden had started to hate school, an abrupt reversal for a boy his mom described as "the happiest kid on the planet."
That's a common response. Kids with unaddressed learning disabilities often become frustrated by school.
Jayden had a brain bleed at birth, and Phillips, who has a master's degree in social work and teaches at Highline College, recalled that doctors told her to watch for neurological problems as he got older. She suspected a learning disability but found herself butting up against a Federal Way special-education teacher who had just graduated from college and said she'd only encountered dyslexia in a textbook.
Finally, at the end of year two of kindergarten -- when Jayden was 7 -- the family brought him to see a specialist to get his eyes checked. The doctor asked him to write the ABCs, but Jayden couldn't get past D.
"Your son has dyslexia," the doctor said.
The school's response? He wasn't far enough behind his peers. We'll give him 15 minutes of extra reading help a day in first grade, then test him in third grade, they told Phillips.
Early diagnosis is key
Jayden's teachers kept telling his parents that their son would catch up. And they wanted to believe it.
If educators could spot learning disabilities early, and address them with scientifically proven teaching techniques, experts say that those students are more likely to keep up with their peers. They are also less likely to get frustrated by school.
Creede Dellenbaugh, the kindergartner who would only scribble with crayons, would try to avoid work by resting his head on his desk, crying quietly. Or he would go to the school nurse complaining of a headache, a stomach ache and dizziness.
Creede is what is known as twice-exceptional: He has a high IQ -- and a learning disability. Twice-exceptional kids can be harder to evaluate because they invent compensation skills for their language disabilities; Creede memorized texts, even though he could not decode words.
It takes years of training to become adept at giving tests that measure reading comprehension, short- and long-term memory, visual-spatial thinking, math skills and phonetic decoding, to name a few, said Janine Jones, the director of the school psychology program at the University of Washington.
There is a shortage of school psychologists, the officials trained to diagnose and refer students with specific learning disabilities to programs that can help.
The UW offers a free testing clinic in the fall, and always has a waitlist. Last year, it assessed 30 students. Currently, 71 families are on the waitlist for this coming winter's assessment.
Beth Sigall, a special-education parent advocate and founder of the Eastside Education Network, tells parents to get an outside, independent evaluation for a child struggling in class.
She believes there's a conflict of interest for a school to provide an evaluation, then use those results to decide on services. And she thinks many districts don't have the level of expertise needed to perform a comprehensive evaluation.
But private tests can run thousands of dollars, and are rarely covered by insurance. If done privately, for example, the UW assessment would cost about $2,500, Jones said. Because of the costs of private testing, the system favors families who can afford them -- or who can hire an attorney and press for different tests if they're unhappy with the results.
The Dellenbaughs spent more than $7,000 on testing to try to get to the root of Creede's learning problem. Finally, when he was 8, a private neuropsychologist diagnosed him as having dyslexia, dysgraphia and specific learning disability in written language. Creede was reading at barely the level of a kindergartner, even though he'd received special education services for two years.
There's a long-term cost to testing delays: Students who don't read proficiently by third grade are four times more likely to drop out of high school than proficient readers are, according to a study by the Annie E. Casey Foundation. In Washington in 2017, 61% of fourth graders were not proficient in reading, according to the foundation. (The Casey Foundation is an Education Lab funder.)
Jackson, the director of English language arts for OSPI, says all kindergarten teachers assess their students' skills during the first two months, and intervene when they are not making progress.
A diagnostic evaluation is "lengthy and exhausting," she said, and most schools try simpler interventions first. The state superintendent's office has also formed a working group to study whether additional screenings are necessary.
Other states take a different approach. A pilot project among eight districts in Pennsylvania uses simple, off-the-shelf tests to measure for reading weaknesses, and uses a structured literacy approach for those who need it.
Jones, with the UW, has witnessed another problem: A teacher who can't control an unruly student may refer that student for testing just to get them out of the classroom.
Minority students are disproportionately likely to end up in separate special-education classrooms. And studies show that kids who are sent to those separate classrooms, rather than included in regular-education classrooms and given educational supports in the areas where they are weak, have much worse outcomes.
Phillips, who is African American, wonders how many kids of color are out there whose struggles in school really come from an undiagnosed learning disability.
In the Lake Washington district, the Vandells battled the perception that they weren't doing enough at home. Teachers gently questioned Stacey's parenting skills and asked her often if she read to the boys. "Every night," she told them.
Their twins Jake and Ryan were born a few weeks prematurely, and at 1 year old were diagnosed with a "learning challenge of unknown origin." The Vandells enrolled them in a number of special programs before school began, including Kindering, a neurodevelopmental center for children with special needs. Before kindergarten, Stacey met with the teacher and told her the twins were learning slowly.
Jake was diagnosed with both ADHD and dyslexia, and the school wanted him to go on medication. The Vandells agreed to a two-week trial but pulled him off the drug after he lost four pounds.
Is Washington an outlier?
It's hard to quantify how many Washington public-school parents are unhappy with their children's special-education services. But educational testing is at the heart of many complaints.
The state's special-education numbers are dismal. More than one-third of students who receive special-education services dropped out of school during the 2014-2015 academic year, according to a report from the federal Department of Education -- giving Washington the country's third-highest rate at the time.
In 2018, Washington passed a law requiring each district to use screening tools, beginning in fall 2021, to identify children who display indications of dyslexia in kindergarten through second grade.
And this year, the state Legislature passed a bill to boost special-education funding by $155 million, although lawmakers didn't pass many of the policy reforms that parents and advocates fought for, including more family involvement in special-education placements.
But change is coming too slowly for Dellenbaugh, Vandell and Phillips. They transferred their children to private schools, at their own expense.
Both Vandell and Phillips transferred their boys to Hamlin Robinson, a Seattle private school. Jake and Ryan are reading at grade level; Jayden is one grade level behind.
Phillips' three other children remain in Federal Way schools, but her experience with Jayden prompted her to apply for a vacant seat on the Federal Way School Board. She was appointed in 2018.
The Dellenbaughs transferred Creede to Cedar Park Christian in Bothell, and also paid for private reading instruction. He's nearly reading at grade level, and his parents say he's made a remarkable turnaround.
He no longer refuses to go to school.