Unable To Get Special Education, One Family Moved
STATE COLLEGE, Pa. — In the summer before their daughter started fifth grade at a new school in a new state, Ed Fuller and his wife met with the special education team.
Fuller, an associate education professor at Penn State University, explained that Jade had struggled with reading since kindergarten. She had been diagnosed with Asperger syndrome and attention deficit hyperactivity disorder. She had started calling herself a “dummy” and begging to be home-schooled.
For years, Texas schools had refused to give her special education services, insisting she didn’t qualify.
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Fed up, Fuller had taken the job at Penn State and moved his family halfway across the country.
At the meeting, he handed the teachers a 4-inch-thick stack of paperwork that included Jade’s psychological and neurological assessments and school records.
Give us a week to read all of that, the teachers said, and then we’ll sit down and talk.
Fuller tried not to feel skeptical.
“I don’t believe anybody anymore,” he thought.
A lot of kindergartners can recognize simple words, like cat. Jade didn’t know any, Fuller realized as she sat next to her at a low table in Marie LeMay’s Austin apartment.
Jade’s dad was out of the picture, and LeMay was raising Jade, who was in kindergarten, and her brother Jake, then 10.
Jade was petite for a 6-year-old and had a cascade of strawberry-blonde hair and bright-green eyes. Fuller asked Jade to read some letters to him. She couldn’t.
It was then, about a month after he met Jade’s mom in 2005, that he first suspected something might be wrong with the child.
A year earlier, the Texas Education Agency had quietly and arbitrarily decided that no more than 8.5 percent of students in each school district should get special education services.
Neither Fuller nor LeMay — nor most anyone else in Texas, for that matter — knew anything about that policy decision, which would drive the state’s special education enrollments to the lowest in America over the next decade.
At first, Fuller kept his concerns about Jade’s reading to himself. He knew that children develop at different rates. Some kids don’t start reading until a little bit later and then they catch up quickly, he thought.
LeMay, who holds a master’s degree in occupational therapy, recognized that reading challenges hold potential for lifelong harm. Seventy-five percent of children with reading disabilities who are not identified before third grade continue to have trouble reading in ninth grade, according to a National Institutes of Health study.
She took Jade to a pediatric neurologist, who put her on ADHD medication and wrote out a note on a prescription pad:
“To school special ed dept., Jade has developmental problems including attention impulse control and language/speech fluency. She should be evaluated by school psychologist and speech therapist — including IQ and LD (learning disability).”
LeMay brought the note to the Austin Independent School District and pushed for a special ed evaluation.
Jade’s teacher acknowledged that she had weaknesses in reading fluency and comprehension. The girl also struggled to follow instructions, sit still and stay quiet.
“Student continues to have difficulty in regular education classroom,” the evaluation noted.
Still, a committee concluded Jade did not have any “educational need” for special education.
Austin ISD spokesman Jacob Barrett said the state’s 8.5 percent benchmark has not affected district practices, saying special education determinations are “based on student need and state and federal regulations.”
But 10 current and former employees have told the Houston Chronicle that the district took the benchmark seriously and kept students with disabilities out of special education because of it.
Before Jade entered first grade in 2006, LeMay bought a house in Round Rock, a suburb north of Austin. At her new school, Purple Sage Elementary, her teachers quickly realized Jade was struggling, particularly with reading, and decided to put her in Response to Intervention.
RTI, which is now in use in nearly every school in the country, is a set of instructional techniques designed to help struggling students in general education.
For Jade, being in RTI meant she received short-term, one-on-one reading instruction for 30 minutes daily, her school records show. Her mother remembers her being pulled out of class only for a reading group with other students.
It helped some but not much. Jade loved her first-grade teacher, and she knew what she was doing, but “she just didn’t grasp the severity of Jade’s disability,” Fuller said.
Even with extra help, Jade still ended up at the bottom of her class in reading. She also couldn’t grasp the concept of coins or time, her mother said.
The school recommended that Jade repeat first grade. LeMay and Fuller agonized over the recommendation, but, eventually, they agreed.
During Jade’s second year in first grade, LeMay felt a rising sense of panic. Jade still couldn’t read fluently.
She brought Fuller to a meeting at the school to help her argue that Jade needed to be placed in special education. Jade was mixing up her letters, pulling out her eyebrows and calling herself a “dummy.”
Fuller was then an adjunct professor at the University of Texas at Austin. He had spent years teaching high school geometry, and he spoke the jargon of education. He understood what the school wanted to do: keep Jade in RTI.
But instead of siding with LeMay, Fuller found himself nodding along with the school officials.
Afterward, LeMay seethed.
“Why didn’t you back me up? I needed you!”
Fuller said he was operating on the most basic of assumptions, one ingrained in him from his years in the classroom. Educators always act in the best interest of their students, he believed back then.
In second grade in 2008, Jade started begging to be home-schooled.
LeMay and Fuller, who had just married, took her to a psychiatrist.
Jade’s overall cognitive ability fell within the average range, records show, but the psychiatrist diagnosed anxiety, depression, ADHD and a learning disability in written expression.
She loved books, Fuller said, but it was painful to watch her read. She’d slog through a page in 10 minutes, and then not understand what she had read because she was focused on reading correctly. She’d get tired and give up.
“Ed, can you read me a story?” Jade used to ask.
He’d read her Junie B. Jones while she soaked in the tub.
At the end of second grade, Fuller said, he and LeMay learned the school had failed to provide Jade with RTI services as it had promised. He said he was told the person in charge of the program had left and “it fell through the cracks.”
Fuller was livid. For him, it was a turning point.
“They just don’t care about our kid,” he remembers thinking.
They transferred Jade to Kathy Caraway Elementary, an affluent school 15 minutes from their home.
At Caraway, Jade was put on a so-called Section 504 plan for reading fluency. These plans let students with disabilities receive accommodations, such as extra time on tests and assignments. They do not, however, involve individualized services or robust accountability and are not supposed to be used as substitutes for special education.
Jade also was placed in RTI again and met with mentors four times a week and attended a small group. She earned mostly B’s her first semester but placed in the 45th percentile for reading and 21st percentile for writing on curriculum-based tests.
Several national education experts said Jade’s experience highlights a serious problem with RTI: It can delay critical special education services.
Toward the end of Jade’s third-grade year, LeMay and Fuller met with Caraway’s special education team, shared information on her diagnoses and pushed for her to be moved into special education.
The school said no.
“Although the student has a documented disability condition, the student does not demonstrate a need for special education resulting from the disability, therefore, it is recommended that the student is not currently eligible for special education services,” the school wrote.
By Jade’s fourth-grade year in 2010, Fuller, who was then working as a consultant for Round Rock ISD, had enough. He emailed the superintendent.
How could she be making so little progress with reading but still not qualify for special education, he asked.
The school responded by scheduling a new round of tests.
But by then, Fuller had applied at Penn State. His first question during his interview, he said, was, “How is the special education here?”
A colleague who had two kids on the autism spectrum told him about a few schools in State College with excellent reputations. He accepted the job.
After they told the school Jade would be moving, officials finally approved her for special ed. By the time her education plan was implemented, however, the school year was almost over.
Like Austin ISD, Round Rock ISD declined to comment on Jade’s case. The district’s special education director, Mary Cardiff, said the TEA benchmark “in no way impacts how we do our business.” She attributed the 15 percent drop in the district’s special education rate in large part to better early intervention.
For Fuller, the district’s stubborn refusal to put Jade in special education finally made sense after the Chronicle in September revealed the existence of the 8.5 percent benchmark, quoting dozens of educators who said that it had deprived thousands of students with disabilities of an appropriate special education.
He knew that in many ways, Jade was more likely than most to get special education: She attended wealthy, well-performing schools. She got good medical care, which led to early diagnoses. And her parents had money and time to fight for her, to say nothing of his own special knowledge about education. So he wondered how many other children have been robbed of their potential.
“The TEA folks should go to jail over this,” he said.
Pennsylvania does not have a special education enrollment target — no state does, other than Texas — but it does fund special ed in an unusual way.
The state assumes that roughly 16 percent of students need special ed and funds all school districts at that rate, regardless of how many special ed kids they actually have.
The state’s rationale for choosing that number was simple — it was the state average at the time, according to Casey Smith, an education department spokesman. But before implementing the system, officials also called in experts and hosted public forums across the state, Smith said.
That approach is far different than what took place in Texas, when a small group of officials set a benchmark well below the state average without consulting the public, the federal government or any researchers.
The Pennsylvania system is good because it does not incentivize either under-identification or over-identification, several experts said.
Pennsylvania law also is praised for requiring schools to respond to verbal requests from parents for special education evaluations, instead of only written requests.
As a result, about 17 percent of students receive special education, a 1.5 percentage point increase from 2004, according to the latest federal data.
Fuller and LeMay returned to Ferguson Township Elementary School a week after they dropped off her paperwork in 2011 and met with a special education teacher and the principal.
We know what Jade’s problem is, the teacher said. We’ve seen it before. We’re confident we can address this.
Jade would be provided with direct reading intervention in the special education classroom. It was exactly what her parents had fought so hard for in Texas.
Charlotte Zmyslo, the principal at Ferguson Township, remembers trying to reassure Fuller and LeMay.
“We won’t let her fall through the cracks,” she told them.
Jade was placed in a reading program called Corrective Reading Decoding Strategies for the start of her fifth-grade year.
She received an hour of reading instruction a day. There were no more than two students in the instruction groups, which were taught by a teacher certified in elementary and special education, as well as reading instruction, or by a paraprofessional trained in the program. It included direct instruction in learning sounds, sound combinations, practice in reading fluency, spelling and comprehension skills. It used immediate correction techniques so that the students would practice correctly.
Zmyslo, who herself holds special education certifications, said the school selected the new, direct reading program because Jade’s problem came in decoding words.
“Through that direct program, it helped her grow and to develop her vocabulary and work on skills of decoding words and putting words back together and develop meaning from what she was reading.”
The elementary school now has a special education enrollment of about 10.7 percent, the same as the district’s although well below the state average. Zmyslo credited the lower numbers to early intervention programs, such as RTI.
Principals, she said, have to create a culture that makes it clear helping struggling students is the priority, regardless of any kind of outside pressure.
“We’re in education,” she said. “It has to be about the kids. It’s not about what I want. It’s not about what the state wants. You give kids what they need. And you don’t back off from that. This is the rest of their lives. You are laying this foundation for who they’re going to be for the rest of their lives.”
With the intensive focus on decoding words, Jade made a year’s worth of growth in reading in her first semester, Fuller said. In the second semester, she progressed even more.
“All it took was for someone to give her the right kind of assistance,” Fuller said.
In sixth grade, Jade attended a math class at Mount Nittany Middle School taught by both special education and general education teachers. It was taught at a slower pace and had supplemental work to help students boost their skills.
In seventh grade, Jade started out in a math class taught by a teacher certified in both special education and middle school math. Although this class used the general education curriculum, it was smaller than a traditional class and was taught at a slower pace, with reteaching as necessary.
Jade performed well from the start and didn’t seem to need the materials taught at a slower pace, her teacher recalled, and she really wanted to go into the larger general education class. So, around the end of the first marking period, the team decided to move her into the other class and monitor how she was doing.
She was able to stay for the remainder of the year.
By eighth grade in 2014, she was reading above grade level and making all A’s and B’s.
In her freshman year of high school, she took an advanced English class and scored as advanced in algebra on standardized tests.
“That never would have happened in Texas,” Fuller said.
Jade is now 16, and has some minor accommodations, including extra time on tests. She has made slow but steady progress dealing with her Asperger’s, which is mild but sometimes makes it harder to fit in.
She still has an individualized education program, a legally binding document that sets achievement goals and lays out a plan for services, supports and accommodations. The school is letting it follow her throughout high school, and her mother said she wouldn’t let the school take her off it at this point. If anything does come up again, her mother said, she won’t have to go through the whole entrance and evaluation process to get services.
She has not needed specialized reading or math instruction since middle school, but she does have a required study-skills class every day in which teachers assist her with organization and homework, and any social or emotional guidance she may need, her mother said.
This semester, her class is reading the book “Monster” by Walter Dean Myers. It’s written like a screenplay, and her teacher wanted the students to read it aloud in class.
Her teacher offered extra credit to anyone willing to take the part of the main character. Jade’s hand shot up into the air, and her teacher picked her.
She seems so much happier now, her mom said on a recent Saturday morning as Jade hiked through falling oak leaves and played with her pet bunny.
Afterward, Jade retreated into the warmth to paint with watercolors.
“Mom,” she said suddenly. “I want to do ballet again. And piano.”
“Will you practice and follow through with it?” her mom asked.
She nodded and jumped up and settled into the piano bench.
“I didn’t want to do it before because it felt like homework,” she said.
Her mom had put little stickers on the keys to make it easier for her to remember them.
G was pink; D was green; A was yellow; and E was pink.
Jade played a few notes, hit a wrong key and stopped. And then she tilted her head slightly and started again, her fingers flowing slowly but smoothly.
how sweet the sound…
© 2016 Houston Chronicle
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