Following doctor’s orders or breaking the law
The next year — the 2014–15 school year — Abigail was preparing to enter fifth grade when the family was told that Sandlick lacked space to give her a room of her own. She couldn’t sit with the general population and was the only student at the school with such severe needs, Randy said. The district moved her to a self-contained classroom at Longs Fork Elementary School in Clintwood.
The new school put her in a desk that was too small — for “2- and 3-year-olds,” Randy muttered. Her parents watched her regress — more outbursts, biting, pants-soiling, repetitively smelling people, not sleeping for several nights — even as teacher annotations in her IEP documented a smooth transition to Longs Fork along with academic progress.
Entering sixth grade in the fall of 2015, she was moved yet again, this time to Dickenson County’s most spectacular building, a new $110 million Clintwood campus that consolidated the middle and high schools. Randy was unhappy even before school started, criticizing the new school for promising, but not delivering, the extra supports that Abigail needed to deal with transitions, including several acclimatizing pre-visits.
Abigail attended Ridgeview Middle School for about three weeks: Her anxiety, diarrhea, and biting outbursts spiked. Randy complained that she had been given a first-year special education teacher and a first-year speech therapist, neither with autism training. With doctors recommending that she leave the school, the Looneys pulled Abigail out — for the district, it was a violation of truancy laws.
Randy began calling attorneys, several of whom said his mountain community was too far away. Months later, a lawyer from another part of the state recommended that they call Janet Lennon.
A seasoned advocate arrives
Sharp, forceful and fashionably blingy, Lennon was prepared for a jury trial, not an IEP meeting in a drab school conference room. A former stay-at-home mom in New Jersey, she guided families in the struggle to win better placements in a few dozen districts across the Northeast.
The Looneys were like most of these clients: parents whose lives had been taken over by advocacy for their children and whose homes doubled as command centers, with boxes of files tabbed by bright Post-its in cluttered kitchens and family rooms.
Parents who seek Lennon out have been in conflict with their school districts for at least three years, she said, “if not six.”
Lennon’s challenges in placing her own disabled child compelled her to support others — a common trajectory for professionals in the world of autism. She created a support group before expanding into full-time consultancy.
“That’s how I cut my teeth in the industry,” she said. “Then I realized I kind of have a thing with memorizing law.”
With the experienced, no-nonsense strategist directing the action, the Looneys felt energized in the pursuit of a private placement.
They took several actions: filing a formal complaint with the Virginia Department of Education, pressing for mediation and seeking a due process hearing.
Their goal was to force the district to meet with them. They continued trying to informally persuade Ridgeview to make changes that would allow Abigail to return.
Eventually, a meeting was scheduled in October 2015; a dozen Dickenson County representatives were present. Because Lennon was there, the district delayed the meeting until it could reach Patrick Andriano, an attorney with Reed Smith — a 1,700-lawyer firm that handles special education disputes across Virginia and other states.
The Looneys expressed disbelief that school officials would spend thousands of dollars fighting a better placement for their daughter while facing a $1.7 million budget cut that had forced them to lay off 42 staff members. In all, district funding had decreased by nearly $6 million since 2009, with 99 staff positions cut.
But the shortfall also made what could be an annual six-figure private placement for Abigail less tenable.
Lennon argued that the school’s IEP goals, many of which had been repeated over time, weren’t sufficiently measurable; Abigail, she noted, had been working on writing her first name “with fair legibility” for at least three years.
When Lennon pointed out that specialized services didn’t exist in the area, school officials agreed there was nothing. That’s why they worked so hard to maintain services in the county’s schools, they said, and were gratified that they had helped Abigail make “substantial gains.”
When the family asked to see records of her gains, however, the file contained only two hand-notated pages from second grade.
“My concern, when I look at the years and years of intensive intervention that you all have invested,” Lennon said, “is that Abigail has minimal, if any, coping skills in transitional changes, and she doesn’t have a communication method in which to express it.”
Janet Lennon works with families across the Northeast who are at odds with school officials over special education services. Most of her clients, she said, have been battling the system for years.
The family wanted to place Abigail in an alternative setting with intensive applied behavioral analysis (ABA) therapy — the most widely accepted treatment for these and other autism-related impairments, which uses data, repetition and positive reinforcement to teach basic skills and more complex interactions.
The district demurred, saying that Abigail’s problems stemmed from her persistent absence from school.
“At this point we think, in our public school setting, we can serve her needs,” a district representative said. “We have in the past, we’re committed to doing that, and we would like to get her back into school.”
Lennon asked about the school’s ability to provide ABA therapy; a certified behavior analyst on contract with the district said she was training staff in the approach. Glennis pointed out that this woman was in Dickenson County about twice a month; certified behavior analysts worked every day at a private school she visited.
In an October 2015 letter to school officials provided to The 74, Abigail’s doctor Gayle Bates highlighted problems that stemmed from inconsistent special education services since she transitioned to Longs Fork in 2014.
“[Abigail] would be most appropriately treated with intensive ABA provided by a certified ABA therapist,” concluded Bates, a pediatrician in Bristol. “It is my recommendation that she be placed in a private autism school that can meet her significant educational and behavioral needs.”
University of Virginia pediatrics professor Dr. Kenneth Norwood, chairman of the American Academy of Pediatrics’ Council on Children With Disabilities, was more blunt.
“Abigail will soon be a candidate for a residential placement if intensive interventions are not instituted,” he wrote. “It has become clear that even her basic needs cannot be met appropriately in a public school environment.”
Norwood’s letter went on to describe an educational setting that he believed would be commensurate with Abigail’s needs. It was a world away from anything she had ever encountered, with an experienced staff trained to work with children suffering from severe autism, development of a method of communication that she could use to effectively convey her needs, an appropriate sensory diet (activities that build attention and responsiveness) and at least 25 hours per week of intensive ABA therapy. All of these supports, he continued, should be analyzed by a behavior analyst daily.
District officials held fast. They denied Glennis and Randy’s request for home instruction because Abigail was physically able to attend class. And Abigail’s absences remained unexcused.
“If your child continues to be absent without a valid excuse, both the parent and child may be subject to juvenile court proceedings,” John Whitner, Ridgeview Middle School’s principal, wrote in a November letter.
A way out, but school won’t let her go
Two months later, the family faced a truancy officer at the school board office, but Abigail’s screaming overwhelmed the conversation. She also attacked her mother physically several times.
Lennon, as usual, stepped forward, saying of Abigail, “Even though we were providing medical documentation every two weeks of her self-injurious behaviors and her emotional-behavioral deterioration, the reason for denial was that the family was willfully withholding her from school, which is absolutely, obviously not the case.”
April Collins, a probation officer who attended the truancy meeting, later said she had never met a child with such severe autism, noting that Abigail was wearing pads on her forearms “like a football player.”
Rather than finding against the Looneys, Collins suggested they apply for funds from a pool of state and local money set aside for at-risk youth. The fund’s stakeholders voted unanimously to pay for Abigail’s private placement.
In order to receive the money, though, Ridgeview had to state in Abigail’s IEP that the placement was for educational reasons, which it refused to do.
It added that private placements were generally made within the same county in deference to IDEA’s least-restrictive-environment provision (though there wasn’t an appropriate private school in the county). The Looneys hoped for a school in Lynchburg, several hours away.
“Yes, a public school probably cannot compete with a private school in terms of what they’re doing, and you can argue that point,” Whitner, the Ridgeview principal, had stated at the IEP meeting. “But I on the other hand believe that we can provide her, and we want her back, and we want to be able to show what we can do.”
“Why?” Lennon asked. “Is she a litmus test for you?”
Student artwork lines the hallways at the Blue Ridge Autism and Achievement Center in Roanoke. The private school was designed to serve disabled students who struggle in typical environments.
Blue Ridge: no more dreaded phone calls
From sunset to sunrise, Abigail didn’t stop screaming. The family was spending the night at a hotel in Roanoke, and the phone was ringing off the hook. Other guests were complaining.
“What’s going on over there?” Randy recalled hotel staff asking. “Do we need to call 911?”
The next morning, Randy and Glennis drove their daughter to the Blue Ridge Autism and Achievement Center, a private day school that specializes in intensive autism care. For years, Randy said guiltily, he didn’t know such a place even existed.
“It was amazing,” he said. “I was beholding children who were as autistic as our daughter, sitting, learning, communicating, and I said, ‘What have I done? I let six years go by, I let six years of my daughter’s life go by, and I could have had her here.’”
Staffing at Blue Ridge can’t be rivaled by public schools. At the Roanoke campus, 68 staff members serve 60 students. The staff includes nine certified behavior analysts, who monitor each classroom and collect student performance data each day. And while Virginia’s schools refer a higher rate of disabled students (and all students) to law enforcement than any other state, Blue Ridge rarely punishes students, said its executive director, Christina Giuliano.
The school’s ability to handle difficult situations makes an enormous difference for parents.
“For the first time, a lot of these parents can drop their kids off and go to the grocery store and be like, ‘Oh my gosh, I’ve never been able to do this. I’m not worried about whether I’m getting a phone call to come pick my kid up,’” said Angie Leonard, the school’s founder.
Marcus Mnich, who has autism and Down syndrome, makes breakfast at the Blue Ridge Autism and Achievement Center in Roanoke, as Ryon Birtsch, a behavior technician, takes notes.
Ellen Mnich remembers the dreaded phone calls well. For over a year, school officials in Botetourt County, in the hills north of Roanoke, would call her, almost daily, to pick up her 17-year-old son Marcus, who has autism and Down syndrome. On other days, the bus would drop him and his disabled classmates off before the school day had even ended.
He began to place his parents in a “police hold,” a restraining technique the Mnichs feared he learned in school.
Like the Looneys 200 miles west, the Mnich family asked for a private placement after observing what they considered a pattern of inadequate instruction and mistreatment. Lord Botetourt High School argued that Marcus was meeting his IEP goals.
Her allegations, Ellen Mnich believes, led the school to retaliate. Marcus sometimes had difficulty using the bathroom on his own. He was susceptible to painful skin rashes — a symptom of prediabetes — and had suffered burns from improperly cleaned diarrhea.
She asked school officials to rinse out his underwear (“don’t send the whole bowel movements home”) and then found feces placed in specimen bags in Marcus’s backpack three times in two weeks, the last time inside “a half a gallon of diarrhea toilet water.”
Furious, the Mnichs said, they drove to district offices and pulled out the bag in front of the superintendent at the time, Tony Brads. “Don’t you dare put that on my desk,” they recalled him responding.
Unsurprisingly, the visit wasn’t productive. Brads wanted to go to his daughter’s soccer game. “Is this what is so important that you had to meet me on a Friday afternoon?” the parents said he demanded to know. Brads told them it wasn’t his staff’s job to clean Marcus’s laundry.
The Mnichs took their story to the school board, and this time they had an advantage: Reporters were covering the meeting and picked up Marcus’s story. Botetourt school officials subsequently agreed in June 2015 to provide Marcus with a private placement at Blue Ridge — an agreement Ellen attributed to media scrutiny.
Another Botetourt County student, Devin Bailey, secured a private placement at Blue Ridge’s Lynchburg campus after he came home from his local school with unexplained bruises on his face. Also in Botetourt County, Roxanne LaPradd said Lennon helped win a place at Blue Ridge for her son Dale, who has severe autism and repeated his same IEP goals — unmet — for five years. He is 20.
Brads has since left the district. John Busher, the current Botetourt superintendent, declined to comment about individual student cases, citing federal student privacy law. He noted, however, that the U.S. Department of Education’s 2016 IDEA report cards placed Virginia among 23 states and territories that met federal compliance requirements for special education.
“We believe that our school division has contributed to these high marks,” Busher said in an email.
The Mniches said their son Marcus has made drastic improvements since he enrolled at Blue Ridge. With hearing assistance — an impairment the family said Botetourt failed to evaluate — he no longer sits directly in front of the television with the sound blaring. He’s no longer aggressive, said Ellen, and he doesn’t refuse to go to school.
At Blue Ridge, behavior technicians carry binders to chart how students perform on each task. At the end of the day, they add the data to a graph measuring progress in different areas and calibrate the next day’s activities.
Students get a reward after each activity. For Marcus, that meant an opportunity to play on an iPad. To finish one morning’s task, making himself breakfast, he chugged a bottle of milk to get to his reward.
“Hey, take it easy,” said Ryon Birtsch, the behavior technician. “Take a deep breath.”
Glennis watches as her daughter Abigail plays with an iPad.
A settlement but an uncertain future
In a strip mall parking lot, Lennon sat in her dark blue Nissan Altima talking on her cell phone. The car’s dashboard was covered with sticky notes, Tic Tacs and beef jerky were stashed in the center console, and bankers boxes of documents were piled in back.
On the other end of the call was LaRana Owens, one of the Reed Smith attorneys representing Dickenson County.
After months of back-and-forth between lawyers, advocates, parents, doctors, school district officials, education department officials and a third-party mediator, the Looneys and the county reached a settlement on May 19. Reed Smith representatives didn’t respond to requests for comment.
In that document, which the Looneys provided to The 74 before it was signed, the county denied wrongdoing while agreeing to Abigail’s placement at the Blue Ridge campus in Lynchburg. The district agreed to pay the parents $16 per day for transportation costs, according to the settlement. Abigail’s tuition costs would be paid for through the state’s Children’s Services Act fund. The parents agreed to absorb all other expenses, including rent for an apartment near Lynchburg, where they will live during the week.
Randy and Glennis didn’t know for sure whether the program at Blue Ridge would be right for their daughter, but they were grateful that she was given a chance to try.
They were grateful for the chance to see whether Abigail’s potential can still be found, but time is ticking. The agreement with the school district guarantees Abigail’s placement only through the end of the 2017–18 school year. After that, her education is uncertain.
She will be 14 years old.