Food, Flowers and Filth

Amy SilvermanDecember 2018
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Experts say vocational programs at Arizona public schools are under-realized at best, exploitative at worst. And they’re letting down students with disabilities.

For as long as her mother can remember, Sophia Landay has wanted to work with animals. Nothing exotic like the stuffed toy rhinoceros the 18-year-old hugs during a recent FaceTime conversation – just cats and dogs.

Instead, Sophia spent much of her senior year at Desert Mountain High School in Scottsdale in the cafeteria. Her assignment? Stocking milk, measuring marinara sauce, counting bags of potato chips.

“Ms. Yvette would say, ‘Count them again,’” Sophia recalls. “And I’d say, ‘I already did it.’”

She was told to do it again.

 

Sophia Landay participates in animal-therapy sessions at Hunkapi in Scottsdale.This began with a couple hours a day in the fall of Sophia’s senior year, and by the spring, she was spending three periods and part of a fourth (there are six total) in the cafeteria, in the name of “job training,” according to her mother, Sharon Landay.

 

Sophia is funny and smart. She stands under 5 feet tall and weighs in at just 75 pounds, with giant brown eyes, short, sporty hair and braces on her teeth. Sometimes it takes her a while to get out the right words. Her official diagnosis is Agenesis of the Corpus Callosum (ACC); the fibers that connect the left and right hemispheres of her brain never developed.

“Imagine life without the Internet, instead using a card catalog and a phone book,” her mother explains. “You’ll get the info eventually – it won’t be quick, though.”

When Sophia was born, doctors told the Landays that their daughter’s diagnosis falls within a broad spectrum – she might learn to walk and talk, she might not. She did. Sophia reports that ACC made it more difficult for her to learn to tie her shoes and ride a bike. But, she says with a big grin that fills my phone screen, she has mastered both. Her condition makes academics a challenge, too, Sharon adds, even though Sophia took classes geared for students in special education.

Sophia doesn’t attend Desert Mountain High School anymore. She walked at graduation last spring without a diploma. Today she is enrolled at a private school paid for with state funds, after her mother successfully argued that the public school system had failed her. The emphasis at the school is life skills development, designed for independent living (Sophia would love to move out of her parents’ house someday soon) and on-the-job training.

The goal, Sharon explains carefully – obviously hoping to not tip her kid off to something she’s been told is coming soon – is for Sophia to learn customer service, cleaning skills and office tasks “in a field where there could be felines and canines.”

On the phone screen, Sophia squeals. She knows exactly what that means. You can’t pull one over on this kid.

Or this mom. Sharon has a master’s degree in special education – and a lawyer on retainer. Still, she and her husband have struggled for years to get their kid a meaningful education, to make sure she was included with her “typical” peers (scholastic-speak for nondisabled children) whenever possible. Putting a kid like Sophia to work in the cafeteria segregated her in dangerous ways, Sharon says.

 

The high school senior hopes to work with animals after graduation.“What do the rest of the students think when they see these students?” she asks. “It sets back special ed so far, saying this is all they can do. Really? Haven’t we progressed in society where we’ve learned that people with disabilities are capable of a lot of different things?”

 

Actually, we have, which makes Sophia’s situation more frustrating.

In some ways, society has made tremendous progress. I’ve seen it as a journalist and in my own experience as the parent of a child with an intellectual disability. My daughter, Sophie, is 15. She has Down syndrome. She was born in Arizona and benefited from the state’s early intervention programs, enrolling in traditional public schools from preschool on. Now a sophomore, she’s mainstreamed in a big high school where she studies geometry, chemistry and theater. She didn’t make the cheer line, but she performed a duet in last year’s school-wide dance concert. Recently, she confided to her caregiver that she feels like Eeyore from Winnie-the-Pooh, sad because she doesn’t have friends outside of school. But everyone there seems to know her name.

Next year, Sophie will turn 16, which is a significant milestone for schoolkids with disabilities. By virtue of the federal law that funds and mandates the Individualized Education Program that guides her time in the classroom, it’s the age at which her “team” of teachers, therapists and administrators at school will need to begin planning for her transition to the adult world.

When I think about this, I picture our family standing on the edge of a cliff.

One thing most parents of kids with intellectual disabilities learn early on is that transitions – large and small – are tough. Bedtime can be impossible. The simple act of leaving Walgreens at the end of a shopping trip has left my kid on the ground with fists pounding and legs flailing more times than I can count. Getting out the door to school? Don’t get me started.

The transition from preschool to kindergarten was hard. Elementary school to junior high was harder. Junior high to high school has been the hardest yet. Not only is it rougher socially each time, the academics get more intense, so that even though Sophie is hanging on (with supports) in a general education setting, it feels most days like I’m holding a helium balloon at a windy birthday party. It’s only a matter of time before I lose my grip and she floats off – or pops.

Sophie’s already told her case manager that she wants to be a choreographer or a photographer when she grows up, and that she plans to attend community college and live at home.

I know that the real-world application of this will be messy. I’ve learned a lot. I laugh when I think back to when Sophie was a baby and my husband and I would joke, “Well, at least she’ll be prom queen in high school.” That’s not going to happen.

 

Special-education attorneys Amy Langerman (left) and Susan Marks at a conference of The Arc of Arizona in November 2018.I also know that Sophie is entitled for things to not be messy. More than four decades of reforms in education law have tried to guarantee that. In fact, the prospects for a meaningful job for young people like Sophie and Sophia Landay are better than ever.

 

On paper, anyway.

The Individuals with Disabilities Education Act (IDEA) was designed not only to give students with disabilities equal access to academics, it’s meant to help prepare them for the real world in meaningful ways. The word “individual” is key here. The law requires that each student be considered on his or her own, rather than lumped into groups according to a diagnosis. What works for one kid on the autism spectrum won’t work for another. Imagine the range for students defined as “hard of hearing” or for those who use wheelchairs to get around. And for each student, there’s the possibility of different hopes and dreams for the workplace.

The federal law was passed in 1975 and fine-tuned in 1990 to shore up issues with job training. And that’s not all. New regulations and programs are being added all the time, at many levels of government. In 2017, Arizona Governor Doug Ducey signed an executive order creating a program called Employment First, designed to give people with disabilities better access to meaningful jobs. The state departments of education and economic security are currently partnering on programs designed to give students more options.

According to special education lawyers I interviewed for this story, none of this has meant much on the ground. The best you can hope for, they say, is to receive Empowerment Scholarship Account dollars that allow you to remove your kid from public school, like Sharon Landay did, and get her significant help.

The irony: Those programs are segregated. So much for the dream of our kids learning alongside their typical peers. But I can see why Sharon and other parents have pulled their kids from the public system in favor of these options.

 

Navigating Special Ed
Navigating Special Ed
Ideally, education for a student with disabilities should chart the same as a typically functioning student – but conditions aren’t always ideal, and a family’s options are often guided by the abilities of the student.
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Susan Marks, a retired special education professor who now practices law in Scottsdale, says she recently heard of an entire special education class at a public school cleaning a lunch room and another program where the special education students are laundering athletic uniforms for school teams.

 

“If you have a disability, you do the cleanup work,” she says, recalling that years ago she’d hear stories of students walking the principal’s dog or even picking up pine needles in the name of job training. She hasn’t seen much change in 30 years.

 

Amy Langerman, an attorney who splits her time between California and Arizona, agrees that our state is way behind. She believes that kids like Sophia Landay are rushed through the system because they are expensive to educate.

 

“In Arizona they get those kids out, they get the diploma and they’re gone,” she says, adding that job training programs are “manufactured.”

The federal law – IDEA – requires that vocational education be designed to help a student learn skills that can be applied in real-world settings, and yet, she says, in way too many instances, students are picking up recycling and garbage from classrooms. “Recycling is, ‘Go pick up trash and put it in a trash can,’” Langerman says. “It’s on every campus in Arizona as far as I know… Why is it that we always treat these kids as custodial workers?”

She doesn’t see how that translates to something meaningful, aligned with a students’ job goals and interests. “If the parent doesn’t know how to fight, the kid gets a one-size-fits-all.”

No one keeps track of job training programs by school in the state of Arizona. Apparently, no one has to.

Stefan Swiat, the spokesman for the Arizona Department of Education, set up an interview for me with Ana Nunez, an education program specialist who explains that Arizona is a “local control” state, which means the state doesn’t monitor what schools are doing beyond telling them what’s required by law.

Job training plans for transitioning students are determined “on a case-by-case basis,” Nunez says.

When I told Nunez and Swiat about Sophia Landay, they were shocked.

“Wow,” Nunez says. “I cannot see how three out of six periods would… support a transition plan. Only if the student had an interest in culinary arts of some sorts or sales of some sorts. The activity has to support the employment goal.”

Swiat, who has been quiet for the first 15 minutes of the conversation, chimes in.

“I mean, that’s, like, a national story,” he says.

Unfortunately, it’s not a unique one, even outside of Arizona. To its credit, California has made significant strides in giving students creative and meaningful options for employment – Langerman has a client who loves music and people, and is now a “seater” at a symphony in San Diego – and Maine and Vermont have outlawed programs that offer subminimum wage jobs, also known as sheltered workshops. But otherwise, the situation is grim. Underserviced and under-realized voc-ed programs are a problem all over the United States.

There’s a name for it.

“They call it food, flowers and filth. Those are the programs for people with intellectual disabilities,” says Ron Hager, senior staff attorney for the National Disability Rights Network, an advocacy group based in Washington, D.C.

That’s a very old term for something that was supposed to have ended a very long time ago, Hager says. “Food” is for cafeteria work. “Flowers” for landscaping school grounds. And “filth” for picking up trash.

“They should be embarrassed that they’re doing this,” he says when told of what happened to Sophia Landay. “It’s supposed to be based on the individual student’s needs, preferences and interests.”

All the special education lawyers I spoke to use that term: “needs, preferences and interests.” Even the Arizona Department of Education people use it.

Hager says that students should be placed in meaningful jobs in the community working alongside all kinds of people, not in pre-existing programs at the school that segregate kids with disabilities. (Imagine a group of students cleaning the cafeteria versus a student working at a coffee cart out in the community, alongside typical peers). If there is a school program, he says, ask if there are typical-functioning students involved in it. If not, it’s not legal, not integrated.

“What does the student want to do? Heaven forbid that we ask the kid what they want to do,” he says.

Identifying a student’s “needs, preferences and interests” isn’t enough. Sharon Landay had that information on Sophia’s paperwork through a good deal of her schooling, going back several years ago when someone wrote down that Sophia was interested in working with animals. It was obvious that Sophia coughed a lot and touched her mouth, Sharon says, making the cafeteria not an ideal setting for her, aside from her interests.

It’s difficult to know what the people at Sophia’s high school were thinking, because Amy Bolton, the spokeswoman for the Scottsdale Unified School District, declined to comment on the Landays’ specific concerns or job training for students in special education in general.

The Arizona Department of Education estimates that roughly 10 percent of the million or so students in the state receive special-education services. That’s a lot of families out there on their own, trying to figure this stuff out. And it’s a lot of children, each of whom – according to the law – are entitled to an individualized program.

Even for Sharon, a trained professional in the world of special education with plenty of knowledge at her disposal, it was an exhausting, perplexing maze. In solidarity, I acknowledge as much in our conversation. She is thrilled with Sophia’s prospects, hopeful that her daughter will soon have a meaningful job working with animals.

I ask her, what about the parents who don’t know where to begin? Who don’t know that what’s happening is wrong?

“My heart hurts,” she says.

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