What happens to ESE students when they leave Volusia schools? Families advocate for inclusion

Whether enrolling in college, entering the workforce or enlisting in the military, most high school seniors have an idea of what’s next as they prepare to graduate from Volusia County Schools.

But a streamlined path isn’t always guaranteed.

Parents, siblings and teachers of Exceptional Student Education students said there is often no clear plan for individuals with disabilities and that, historically, the district hasn’t actively assisted them in making the transition.

With a new executive ESE director at the helm this year, the district hopes to build upon what it already offers its students. But that’s one part of the transition plan.

Since resources in Volusia County — like adult day programs, rehabilitation centers and on-the-job training, among others — are somewhat limited when compared to offerings in other parts of the state, parents said they struggle to find what does exist here.

Until recently, the district didn’t host career, resource or job fairs for ESE students, which made it difficult for families to learn about options early and determine what would be the best fit for them.

Plus, some resources have years-long waitlists, parents said. And if they’re privately owned, they can deny individuals service for being either “too disabled” or “not disabled enough,” parents continued.

So, families became creative in writing their next chapter.

This summer, Shirley Lund and her husband, Frank, opened Pure Joy Cat Cafe, a nonprofit coffee shop with a cat lounge, kitten room and adoption center.

Their son, Isaac Morden, works there. He has Down syndrome and aged out of Volusia County Schools’ transitional program at Seabreeze High School in May.

“Because Volusia County didn’t help us with any sort of transition,” Lund started, “we made the transition ourselves by pretty much creating a new business for Isaac to run.”

Lund said she was generally unsatisfied with her son’s experience in the district and felt Morden was more isolated than included.

“We unfortunately had to advocate strongly for Isaac during his IEPs (individualized education plan meetings) to the point that we reached out to Disability Rights of Florida and had an advocate with us at meetings for the last couple years,” she said.

“We had tried to get Isaac included with the general ed population by having him experience electives, and his favorites were chorus and keyboard and culinary,” she added. “But the school continued to fight us about that and wanted him isolated in the ESE building. … He should have had the same opportunity that every other high schooler had.”

Morden will help with day-to-day cleaning at the cafe. But his biggest responsibility will be interacting with guests.

“That’s what he lacked while he was at Seabreeze High School — was the socialization with gen ed people,” Lund said. “So we’re trying to make up for lost time.”

Lund will assist with the shop on weekends, and since Morden’s father is retired, he will work there full-time with his son. He is also forming a partnership with Easterseals so other individuals with disabilities can work for pay at the shop, too.

Pure Joy Cat Cafe is located on Beville Road in Daytona Beach and took about a year to get up and running.

“We funded this ourselves, which other families might not have that ability to fund and build a business for their child,” Lund said, noting that costs equaled approximately $100,000 and came from their retirement savings.

“We were really thinking about going to court for due process … and we thought, why spend thousands of dollars to fight a system, fight the government and lose? Why not put those thousands of dollars into something positive and grow a business for Isaac? And that’s what we did instead,” she continued. “But even though we didn’t fight the system … we want our voices heard.”

One parent did take Volusia County Schools to court

Just like Lund, Anni Suadi felt her son’s experience in Volusia County Schools was more isolating than inclusive.

She filed state and federal complaints in 2022 alleging the district discriminated against her son, Lance Avery, who has Down syndrome, and other students with disabilities at Seabreeze High by denying them electives.

A judge sided with the district and determined there was no violation to Avery’s IEP.

In a January 2023 interview, once the final order was determined, Suadi told The News-Journal she wasn’t done fighting. Advocating for inclusion is still her “mission.” And she’s taken tangible strides thus far.

Starting with her son, Suadi found Avery work through the PASS (Plan to Achieve Self-Support) agency, a social security income service helping individuals with disabilities return to work.

Avery aged out of Volusia’s transitional program in December 2022; however, Suadi said he hasn’t attended school since August 2022.

Avery’s first job was at Planet Fitness. Now, he works at the Nova Community Center in Ormond Beach where he greets guests, sweeps floors, cleans windows and puts away gym equipment.

“He’s just awesome,” Suadi said.

Avery also participates in “Active Wednesdays” at the Nova Community Center, a one-hour exercise class for adults with disabilities led by Suadi.

“I see them (and) they glow,” she said. “Fitness and exercise, it gives them more self-esteem and confidence.”

Suadi spoke at Volusia County Schools’ Sept. 24 board meeting, sharing Avery’s story and urging the board to implement the following changes so ESE students can feel more comfortable participating in society:

1. Allow ESE students to take the same amount of elective courses as general-education students and allow them to eat lunch together.

2. Recreate a buddy system where general-education students earn volunteer hours for walking ESE students to class.

3. Reinstate on-campus internships for ESE transitional students so they can spend more time with general-education students and less time traveling off-site.

In the last few months, Suadi also assisted Ormond Beach Mayor Bill Partington in launching a pilot program to help adults with disabilities find employment.

“They would just come in for a couple hours … and they’d be paid for it … and somebody would supervise them or work with them to help them create job skills that they could actually utilize in real life,” Partington said. “And the goal is being to provide them with a better opportunity to be employed and also to kind of normalize their existence in society.”

While it is still in its “infancy,” the program will launch in upcoming weeks and last about four to six months, Partington said. If successful, it will continue and expand.

“I want to see them out in the community,” Suadi said, “… because when they leave there, they go home. They don’t have really too much going on in their life.”

No other option than to stay home

Monica Gray is a single mom to her son, Grayson Graves, who has severe autism and optic nerve hypoplasia with legal blindness.

Graves aged out of Deltona High‘s transitional program in December 2022.

He wakes up every morning around 2 a.m., talking or singing “at the top of his lungs.” Eventually, he falls back to sleep until he officially starts the day between 5 and 7 a.m.

Graves needs help bathing, using the bathroom and taking medications.

He needs assistance and supervision while eating because he doesn’t maneuver utensils well on his own and sometimes, he tries to swallow “giant bites” of food whole.

Additionally, he trips and falls frequently, “partly because he has low muscle tone, partly because of his low vision,” Gray said.

And when he gets frustrated, he hits himself in the face.

“He bites his hands, his knuckles … out of frustration, and so sometimes, of course, the calluses are thicker, and then they’ll split open and then he’s bleeding,” Gray said. “So there’s a lot of dealing with his psychiatric provider to try to get the medications for his autism and his anxieties.”

Graves has been denied from everything he has tried to join.

“Grayson (first) failed out of three different programs because of the noise he makes, and he’s disruptive. I do not dispute that at all,” Gray said. “But because they are private entities, rather than publicly funded, there’s no impetus for them to continue to try to work with him because they could get him out and have somebody else come in.”

After that, Graves tried vocational rehabilitation but was told the program relied heavily on computer-based modules.

“Because Grayson doesn’t have the fine motor skills, the ability to pay attention for that long, and the vision issues … he’s not going to sit and maneuver a module on the computer with the mouse and the keyboard without having somebody there one-on-one, so they said we’re not a good fit,” Gray said.

Graves then moved on to the adult day program at Duvall Homes in DeLand, but Gray said he was denied because he was higher functioning than everyone else.

Lastly, he tried participating in adult day training at Arc of Volusia, first in DeLand, then in Daytona Beach, but Graves didn’t acclimate well there either.

“I’ve got him and my job that I have to give my attention to,” Gray said. “And we’re basically just flying by the seat of our pants because there’s no county-based, state-based, whatever program that can take him.”

When she can’t manage it all herself, Gray leans on her village: her 74-year-old mom, her brother who was recently in the hospital with an inoperable brain tumor, and a friend. Since Graves needs around-the-clock assistance, Gray also uses a small CNA service, which costs $23 an hour when she has to.

“We just take it as it comes,” she said.

Gray isn’t the only one ‘flying by the seat of our pants’

Ashley McCaffrey was a paraprofessional, substitute and ESE teacher at Deltona High before switching to remote work in 2021.

Her primary focus is caregiving to her twin sisters, Brittany and Caitlin Boger, who both have epilepsy, autism, and fragile X.

When the Bogers aged out of Deltona High in 2006, they were “grandfathered” into United Cerebral Palsy, a nonprofit that tries to ensure people with disabilities are included in the workplace and community.

“There was a great grant where they could go a couple of days a week, and we just put in the bill for the Votran, which was $20 a day round trip to go to and from Deltona, Daytona,” McCaffrey said. “Then, funding got cut.”

Prices increased to $150 per day, plus transportation, so they explored other options.

“Nothing ever worked,” she said. “Somebody didn’t like the way that they worked, or they didn’t move fast enough or they talked to too many people or whatever, so we just adjusted our life to be able to provide them the support that they needed.”

McCaffrey and her husband, her brother and their parents shifted their work schedules so their lifestyles could accommodate caring for the twins, who will never be able to live independently.

“We have one during the week, Sunday through Friday, and then they’ll both go home on the weekends and then we switch off,” she said. “We do that so we have a structured schedule of workouts, chores, daily activities, daily socialization to keep them active in the community.”

McCaffrey’s family started talking about the twins’ future when they were in middle school.

“We decided that we’re going to be their primary caretakers,” she said. “We’re not going to put them in a group home unless one of us absolutely cannot take care of them any longer.”

She believes having conversations about the future early and often is vital for success.

“We did everything in our power as a family to ensure that the girls can have the best life that they possibly could,” she said. “I think if the families are given the right amount of resources, or they know where to go, they can (be successful), but the county as a whole doesn’t provide a lot of resources.”

Some parts of Florida have it figured out

McCaffrey praised resources in Palm Beach and Broward counties.

“They actually have therapeutical day programs. They have occupational therapists. They have more hands-on … vocational programs for special needs individuals where they can go and learn a job trade or work a couple hours a week,” she said.

Gray also admires other counties and said if she could implement her dream, she would open a program mirroring Special Hearts Farm in Winter Garden, which provides individuals with disabilities and unique abilities adult day training, supported employment and entrepreneurial business opportunities, according to its website.

“There’s a connection there that can be made between the animals and … people who are not well adept at the social interaction,” she said. “There’s a lot of pressure involved in human interaction and human social situations, and it’s not there (with animals.) It’s just pureness.”

Orange County Public Schools collaborates with Special Hearts Farm to create a “true transition opportunity.” Participants can host events like goat yoga classes as well as produce and sell products like soap and rustic signs, its website said.

Mary Tilford, an ESE teacher at Deltona High who currently serves multi-handicapped, varying exceptionalities students, has been with the district for 30 years and is a Volusia United Educator’s union member. She agreed something like Special Hearts Farm would thrive in Volusia County.

“I would love for this district to please put some money into programs that would benefit these children after they graduate because what happens … is many of them just walk off a pier and drop, and that’s it,” she said. “There’s nothing in place for them, and that is a very sad thing. They need more attention. They need more money. They need so much, and we have to ask for it for them because they can’t ask for it themselves, and their parents are overwhelmed.”

Tilford loves her students and worries often about their well-being once they leave the district. She told The News-Journal she wants better for them, and she won’t retire until she sees change.

“The last thing I want them to do is have to sit at home with nothing,” she said.

“As long as I have (a) breath in my body,” she continued, “I’m going to keep speaking out for them.”

Jacquese Copeland, who has been the district’s executive ESE director since July, also sees benefits with this program and said she reached out to Orange County stakeholders to learn more about it.

“I really don’t want to put any limitations on our work,” Copeland said. “I think it’s an amazing opportunity for kids and (I’m) just seeing what we can do here in Volusia.”

New district leadership brings new goals

Copeland told The News-Journal that Volusia County Schools begins its transition process when students are in middle school. Every nine weeks, they update a teacher on their interests, she added, and parents are included in the conversation annually at an IEP meeting.

“This is the law,” Superintendent Carmen Balgobin said at the Sept. 24 board meeting. “And there is a log that’s kept in the reporting that’s provided to the state because we have to show proof that this transition is taking place.”

Once students reach high school, Copeland said they begin discussing different options, deciding what type of diploma they want and determining if they will participate in the Project SEARCH transitional program where they could work, collaborate with job coaches and employment advisors and participate in on-the-job training.

“Thankfully, seemingly, the courts have ruled in our favor twice that Project SEARCH is a great program and we should encourage our students to continue to participate in that program,” board member Ruben Colón said at the Sept. 24 meeting.

McCaffrey noted that when she taught in the district, general-education students had career, resource and job fairs, but ESE students didn’t.

Copeland confirmed the district implemented ESE Family Nights two years ago, and it will host the third this spring.

“That is an evening of transition resources, curricular resources, community resources, everything under our umbrella of ESE in terms of speech, occupational therapy, physical therapy, our assistive technology, anything parents would have access to on this evening, and they have access to the person who can get them what they need to be successful for that student,” she said. “That is a practice that we will continue as long as I’m in the position.”

Copeland said parents should reach out to her directly or join the ESE advisory group if they believe their child’s experience in the district has been isolating.

“We don’t ever want a child or a family to feel like their child is not being included in anything to do in Volusia County,” she said. “So … we can work together to ensure that no family has that perception of Volusia County Schools at all.”

As she continues her first year overseeing the district’s ESE department, Copeland remains hopeful, confident and committed to listening and collaborating with the community so that the program can continue improving.

“With me, it’s all about … having that listening ear for my end user,” she said. “Also, I have an amazing support of our superintendent and the school board in this work … and they’re in full support of making sure that this department gets back on the right track and making sure that we have the right people to help us do that work.”

This article originally appeared on The Daytona Beach News-Journal: Volusia parents advocate for inclusion of children with disabilities