The U.S. Department of Justice is investigating the Volusia County school district for allegedly discriminating against students with autism spectrum disorder and Florida's education system has struggled to provide the extra resources needed for students with autism to succeed.

When Claudine Malfatti’s 12-year-old son Chris comes back from his frequent wanderings around their neighborhood pond, he trots up to her and gives her a hug and kiss on the cheek.

He doesn’t mind if it’s raining, or if it’s hot — even as his face gets red over the heavy winter jacket he keeps on year-round. Sometimes he takes a break from his wanderings to eat Cheetos Puffs and quiz his mom on dinosaur facts.

Those are the good days.

On the bad days, he might punch a hole in the living room wall, bolt out the front door or throw something down the storm drain outside of his family’s Deltona home. Then he’ll look to his mom and ask, “I’m a good boy, right Mommy? Tell me I’m a good boy.”

Chris has autism spectrum disorder, an umbrella term that refers to challenges with social, behavioral and communication skills. He was one of 1,122 students with autism enrolled in Volusia County schools last year — a number that’s more than tripled in the past 10 years even as resources to serve them have failed to keep pace.

Now the U.S. Department of Justice is investigating the Volusia County school district for allegedly discriminating against students with autism. While the DOJ continues to contact local officials for more information, a representative wouldn’t say when the investigation will conclude.

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The News-Journal spent four months digging into the same issues. Interviews with parents, experts and educators showed that as the number of children with autism has risen, federal funding to provide extra services for students with disabilities has stagnated, and the state and district have struggled to provide the extra resources needed for students to succeed when they are included in general education classrooms.

Among the newspaper's findings:

The number of paraprofessionals, or teacher aides, in general education classrooms has stayed almost the same, despite the increase in students with autism. School personnel — including teachers — are not required to complete any specific training before working with students with autism. And the district has only two people who specialize in autism education, who work with those 1,100 students and support their teachers in about 70 schools. Teachers who are certified in exceptional student education account for some of the highest number of vacancies every year in Florida. In Volusia, one-third of the school district's vacancies in July were for ESE teaching spots, which exceeds the state’s average. With federal funding for students with disabilities unchanged over a decade and state funding levels that have left Volusia facing major deficits in each of the past two years, the district has been limited in finding the money to provide the extra services needed. The school district prohibited teachers or school-based personnel from speaking to The News-Journal for this story because of the ongoing DOJ investigation. Director of Exceptional Student Education Kim Gilliland said they are awaiting the results of the investigation before they make any changes in regards to educating and providing services to students with autism. She added that the district’s methodology for providing services follows the law.

“We all want the end-game to be the same, which is for that student to be a productive citizen, and to have a meaningful life and career that they choose,” Gilliland said. “That process is sometimes very easy to get there. And sometimes it’s very challenging.”

It's so challenging many parents turn to advocates and attorneys to hold the district accountable to the legal requirement, creating adversarial relationships among groups who should be working together in the best interest of the child.

And sometimes parents feel their only option is to try to educate their child at home. That's what Claudine Malfatti and her husband did after Chris' behavior worsened and he refused to return to school. Although the Malfattis came to rely on the teachers and staff at Deltona's Forest Lake Elementary, they also noticed a lack of training and support for the people who were working with Chris. So Malfatti left her 13-year career as a social worker so she could homeschool her son.

“It’s like you need help, but what is there? This situation is kind of reaching those heights, but what can you do?” Malfatti said, asking the same question every family with a child who has autism has to ask. And finding, as many of them do, there’s not a good answer.

“It’s really, really hard.”

***

Autism, or autism spectrum disorder, is a developmental disorder that affects social skills, communication and behavior. It has become increasingly prevalent in the U.S., but has no one cause.

Research shows the disorder is likely caused by a combination of genetic and environmental factors, like advanced parent age, complications with pregnancy and birth or multiple pregnancies less than one year apart. Despite popular conspiracy theories and misinformation online, scientists, researchers and doctors are clear on one thing: autism is not caused by vaccinations.

One in 59 children in the U.S. was identified with autism in 2018, according to the Centers for Disease Control and Prevention. Data from Volusia County showed 1 in 33 children had autism last year.

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Nationally, the number of children with autism has doubled over the past 10 years. In the Volusia school system, the number of students with autism has more than tripled — although they accounted for fewer than 2% of the district's 63,000 students in 2018.

But researchers can’t really explain why there’s been such increased prevalence of the disorder. Experts like Shawn Ullman, the senior director of national initiatives for The Arc, an advocacy organization for people with disabilities, say it’s partially because of an increased awareness of the disorder and more early diagnosis.

Early diagnosis has become more common because doctors now understand it’s critical to catch the developmental disorder early — in children as young as 2.

“The earlier we intervene, the better the chance that we are going to fix some of the behaviors that will interfere later on,” said Dr. JoEllen Rogers, a board-certified behavior analyst with Easterseals and a licensed school psychologist.

It’s one of many recent shifts in the way that professionals and communities understand disabilities.

One of the biggest came about in the late 1990s, when there was a shift to the system we recognize today: inclusion, or the push to get students with disabilities in general education classrooms — with extra support — as often as possible. Before that, dating back to 1975 when the country passed the Individuals with Disabilities Education Act that said children with disabilities deserve an education, most such students were provided separate, specified programs to accommodate their disabilities.

“Now we know that some need segregated settings, but most don’t,” Ullman said. “Most students with disabilities can learn with the same teacher that all of the kids their age have, learning the same information in a general education classroom, but they do need extra services and supports.”

Inclusion also has benefits for the other children in the classrooms and for society as a whole, she added.

“People with disabilities don’t usually magically go away when they leave school,” Ullman said. “They’ll be part of our workplaces, they’ll be part of our churches, they’re in our neighborhood. … And when I am able to grow up as a kid in school where everybody learns in the same classroom, and I understand, ‘Sometimes they have a bad day but that's not every day, we can all get over it,’ it allows me to be more tolerant. It just allows me to be a better person.”

Three-quarters of the students with disabilities in Volusia are being serviced in the general education classroom — which still lags behind the state’s goal of 85%. Some other districts have separate schools for students with significant disabilities or behavioral issues, but Gilliland said it's a conscious choice in Volusia not to have such a school or offer disability-specific courses in order to mainstream those students as often as possible.

Of the 62 private schools in Volusia registered with the state directory, only one-third say they service students with autism. Just four of those specifically advertise their work with students with autism on their website.

“Volusia County is the no man’s land of autism education,” said Katie Kelly, a civil rights attorney from Community Legal Services of Mid-Florida who works with 30 to 50 Volusia families at a time, most of whom are struggling to get services from the schools. “We really are. We are the Death Valley of autism education."

Some families hire parent advocates like Dawn Starr to help them navigate the complex bureaucracy to get the services they're entitled to. She said that inclusion is a good idea in theory — with the right funding, training and staffing — but the public school system is not set up to successfully implement it.

“I believe in inclusion, I absolutely do,” said Starr, who currently works with 30 Volusia families. “However, they are not implementing true inclusion the way that it was meant to be implemented.”

That’s why Starr said some Volusia parents are afraid to send their children with autism to school, and teachers are strained to provide both academic and behavioral support services to these students.

“There is a national issue," Ullman said, "and, unfortunately, I don’t think Volusia County is unique or special when it comes to ... putting services in place for students with autism.”

***

At the Malfattis' Deltona home, some neighbors are understanding of Chris' disability. They’ll strike up a conversation with him when he shows up in their yard unannounced — even as he runs his hands over the blue inflatable kiddie pool in the driveway and attempts to empty its contents onto the concrete.

But others see Chris walking around and call the police.

Even these interactions can be contradictory. One day, a responding deputy told Claudine Malfatti’s neighbors they need to find a way to coexist with Chris. On another, a different deputy told Malfatti to keep her son on a leash, she said.

"I was mad after that. So I made a complaint,” she said. “There’s always a risk, so I have to be really careful to make sure that I’m doing what I need to do with his doctors and supervising him."

When Malfatti finally takes a moment to sit down, Chris walks up and down the hallway, keeping up a steady monologue of questions and observations. Often he makes his way to the front door, and presses into the sweltering heat — despite Malfatti calling after him to stay put, or standing guard at the door to block his escape. She doesn’t know how much longer she can safely do this because he’s already her size.

Malfatti ends up in the front yard, standing in the grass with her eyes trained on Chris.

"If I go after him he just keeps going further away, so I just try to sit here and watch him."

She misses the support and respite the school day offered. She said Chris' teachers were great, but there were times when the school would call Malfatti to pick him up because they were unable to handle his behavior, and Malfatti noticed a lack of resources for his teachers. She's hopeful Chris will return to school, but for now she’s staying up until four, sometimes five in the morning to have time for herself.

“They were so supportive and when I lost that I was like, 'Oh no — that was like my only thing',” Malfatti said with tears in her eyes. “That was it.”

***

For inclusion to work, the idea is for parents and educators to meet and develop an individualized education plan, or IEP, for each student. The legally binding plans spell out what support services each student with disabilities requires to function in a general education classroom. Services could include having a paraprofessional in the room; sending intervention teachers to work with students in small groups or one-on-one settings on a specific topic; giving students the license to go to another room or take a break when they’re feeling overwhelmed; or incorporating the use of assistive technology into the day.

The list of support options is endless because when you talk to any expert they’ll repeat the same thing: “If you’ve met one child with autism, you’ve met one child with autism.” Meaning every child is different, and their needs are different.

The obstacles to meeting those needs are also different.

First, there are the teachers. Teachers who are certified in exceptional student education are not paid any more than regular classroom teachers and have been identified as a critical shortage area in Florida every year for the past decade. This year, it's the certification area with the second-highest number of vacancies and the third-highest percent of courses taught by someone without the appropriate certification.

The state projects that almost 20% of its vacancies this year will be in ESE classes. In July, they accounted for 30% of the instructional vacancies in Volusia.

Next, there's the money. The school district gets funding for students with disabilities the same place it gets the rest of its money: a complicated per-student funding model in the state that consistently ranks low in education funding metrics.

Volusia could only provide information about state funding for students with disabilities for the past three years. It showed a categorical funding increase of 4%, raising their allotted funds to $64 million, between 2015-16 and 2017-18. That’s on par with increases the district generally gets in funding from the state, which went up almost 3% in the same time frame.

Districts also get federal funding designated to cover the “excess” costs of educating students with disabilities. In Volusia, that money is mostly used on personnel. The district received $14.1 million in 2008; by 2017 they got $14.5 million — an increase of less than 3%.

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A support intervention teacher — one of several who spoke to The News-Journal anonymously because they were not authorized by the district to speak on the topic — said all of the problems she sees with the system go back to funding.

“Kids on the spectrum are very complicated,” she said. “They don’t just need the social services. They might need social, behavioral, speech therapies. We can’t provide all of that in the school system unless something drastically changes in the funding.”

The district's Gilliland gave a more ambivalent response to the question of funding.

"Is there a need for more money? I would definitely say yes, there's always a need for more money. But I would also say that we have the ability to service the students," she said. "And when we get into situations where we feel like we would like to provide something more for a student that's where a decision has to be made. Is it a need? Or is it a want?"

Experts say many students with autism in regular classrooms would benefit from the one-on-one or small-group support a paraprofessional or additional ESE-certified teacher could provide, but without more funding that's a need the district has been ill-equipped to provide. In the past decade, the number of students with disabilities, ESE teachers and paraprofessionals have all gone up by about 10%. At the same time, the number of students with autism has tripled.

In the absence of both more funding and more staffing, the district could offer more training for the existing educators who interact with students with autism. But district-provided training for teachers on educating students with disabilities has never been required, even if they’ll have a student with autism or another disability in their class.

Gilliland pointed out that teachers who go through traditional teaching programs in college learn about working with students with disabilities, adding that autism-specific training is not a prerequisite to teaching those students. Teachers and administrators have access to training year-round, in multiple formats. But the barrier to offering it more broadly is time, Gilliland said. It's a lot of information.

But the complex task facing teachers is an argument in favor of putting more emphasis on training, in the view of parent advocate Starr.

“The schools are not prepared for these kids, they are just not prepared," she said. "They have to train the people who are on the front lines with these kids on how to handle these behaviors.”

***

For students like 8-year-old Melody Graybeal, whose individualized education plan requires a one-on-one paraprofessional to be successful in a school setting, the shortage of paraprofessionals was detrimental to her behavior. Even though the school district is legally obligated to provide a paraprofessional, her parents say it took over a year of pressuring the school to assign one.

“We had four or five IEP meetings that year to get her services,” said her mother, Ashley Graybeal.

The News-Journal obtained documentation of 37 complaints made to the school district by parents of students with a disability between 2015 and 2018. Of the complaints, 15 were for violations for the services students were entitled to under their IEPs — ranging from staffing or equipment problems to issues getting an IEP meeting to begin with.

Between 2015 and 2018, there were three complaints filed with the Florida Department of Education relating to violations of IEPs. All were substantiated.

Between 2015 and mid-2018, there were 26 complaints of civil rights violations filed with the U.S. Department of Education. Eleven were for violations related to the rights of students with disabilities.

The IEP for Jordan Harper of Daytona Beach said he was supposed to have a one-on-one paraprofessional and in-school therapy at his elementary school — like providing a sensory room, which has stations and activities aimed at helping calm these students when they are feeling overwhelmed in the school environment. But the school was not providing those supports.

"He didn’t have a sensory room, or sensory breaks to help with his behavior. They let him wander the halls or use a tablet for music videos all day,” said Kelly, the attorney who's helping Jasmine Harper get the services her son needs. “One teacher even gave him a dollar a day if he behaved."

Kelly said that for five years, Jordan made absolutely no academic or behavioral progress.

“He was so used to getting away with (those behaviors) because there were simply not enough support people assigned to the school to deal with the large number of kids with disabilities placed there,” she said.

When it comes to determining which students get what, Gilliland said it’s an issue of responsibility and due process.

“It is never, I don’t believe, the district’s position to deny someone something,” she said. “But we also have to make sure that the student needs that something. If we are over-providing it is just as bad as under-providing for a student.”

But many parents of students with autism, even if they’re happy with their child’s school and teachers, are frustrated by the byzantine process they have to go through to get the services their children need.

“Little things in the IEP that should be in place, they just aren’t until somebody like me comes along and makes them do it,” explained Starr, the advocate hired by the Graybeals to get help for Melody. “It’s a really unfair system, and it’s really set up against parents.”

The Graybeals keep two large binders filled with everything they need when they go to Melody’s IEP meetings: Melody’s legally binding IEP agreement, pages listing her behavioral issues, her report cards, a police report, a complaint filed with the state, all of it in carefully color-coded sections and protective sleeves.

Ashley and Benjamin Graybeal describe two years of back-and-forth with their daughter’s educators and administrators, starting with the weeks it took to get a meeting to talk about the services she would need at her new school. Later, they would enroll her in a second school. On their way out, they say, the principal at the first school told them they were welcome to bring Melody back “when she’s more gen-ed.”

At her current school, it took an entire school year for Melody’s parents to negotiate with school staff to get a paraprofessional assigned to help her, one-on-one. During her time without one, Melody’s parents say her behavior worsened. She had to be restrained once; received nine referrals; and threatened to harm herself or others in four documented instances, including one that resulted in contacting the police.

It wasn’t until the Graybeals filed a complaint and a mediator came in that they were able to get the paraprofessional assigned to their daughter, not the whole class, and written into her legally binding individualized education plan.

“They violated the IEP in so many ways and were treading on the border of gross discrimination,” Benjamin Graybeal said. "They didn't want to put it (the one-on-one para) in writing so they wouldn't have to provide it."

Although they can’t discuss the specific terms of the mediation, they say they left with 80% of what they wanted. But it was well into the 2018-2019 school year before the terms were fully implemented because of communication issues between the district and school personnel.

“We are at the mercy of who works with her every day,” Benjamin Graybeal said. “We feel every different emotion: worried, sad, upset and angry.”

The district’s Gilliland conceded the challenges that frustrate parents.

“But I know that we work very hard to solve those," she said. "I do wish that we had more certified staff. I do wish that we had more time for training. And I do wish that we had more time in the day to be able to monitor what goes on ... to provide the right supports that are on-time supports, instead of it becoming a crisis."

***

In the meantime, the district is feeling pressure from the Department of Justice investigation and attorneys like Kelly who, in addition to the DOJ complaint, regularly files Office for Civil Rights and State Department of Education complaints on behalf of her many clients in Volusia County.

Parents like the Malfattis and Graybeals worry about the future if they can't work with school officials now to help their children get the education and behavioral support they need to be self-reliant adults.

“What happens when they turn 18?” Benjamin Graybeal asked. “What happens when services get even harder?”

And teachers worry that the problems they face in the classroom will only become more common unless something changes.

“We’re getting more and more students with higher needs and I don’t know how much longer we can handle all of that without more support — from behavior specialists, guidance counselors, therapists and outside mental health,” said the teacher who spoke anonymously to The News-Journal. “We have very limited resources."

When inclusion coincides with a lack of funding, staffing and training, that’s when classrooms can become unmanageable for teachers who feel they have to make a choice: balance the needs of one or a few students with disabilities, with the needs of their entire classrooms.

“The end users are trying to meet so many diverse needs and they don’t have the training, necessarily, and absolutely not the support and resources that they need to adequately service the kids,” said Volusia United Educators President Elizabeth Albert. “They’re doing the very best they can.”

COMING MONDAY: The number of children with autism in Volusia County who are Baker Acted is up 500% over four years, even though experts say it will almost never help that child overcome whatever behaviors they’re exhibiting.