Published April 20th, 2023 at 6:00 AM8 minute read
Gerald Mitchell, 17, is happiest around his cousins, playing Mario Kart and being in the kitchen.
Gerald, who was diagnosed with autism at 2 years old, is timid and soft-spoken. But he is quick to respond when asked what kind of food he likes to make.
“Pizza,” he said.
What’s your favorite kind of pizza?
“Um, pepperoni,” he said with a half-smile.
His mom Michelle thumbs through a stack of special education documents from school.
Their busy schedules make planning for Gerald’s future complicated. Michelle gets up before dawn to get to her full-time warehouse job at 7 a.m. Her husband Gregory is a construction worker, so he’s out early in the mornings and at times late into the evening.
But they feel as if they’re running out of time. Gerald will graduate from high school this year, and now more than ever Michelle and Gregory are focused on preparing their son for adulthood. They have two older children who have moved away and have their own careers.
Gerald is their youngest and only child with a disability.
“He’s the baby in the house. (We’re trying) to push him as much as we can … to set goals for him,” Gregory said, looking at his son.
One day, the family hopes to open a food truck or a restaurant. The path to beginning that dream has been rocky. Support programs exist for kids like their son, a teen with a developmental disability. But often they find what they need too late or not at all.
“What’s going be here for him when I’m gone? When our triangle breaks? Is he going to be able to navigate the real world?”
Talking about this is emotional, they say. That’s why they want to set him up for an independent, enriching life.
“I just really wish that it was (easier) for families to look for and navigate (resources),” Michelle said.
Then the family met Kim Riley.
Riley is a fellow parent of a young adult with a disability and the CEO of The Transition Academy, a nonprofit that serves youth with disabilities with their career and job prospects. Her experiences matched theirs.
When Flatland first met her in 2018, Riley was facing hurdle after hurdle.
“The disability world is very unnecessarily complicated,” Riley said. “It’s very word of mouth.”
Her son Kendall is now in his early 20s, standing tall at about 6’3″. He has limited verbal skills. Shortly after graduation in 2019, he had a behavioral outburst and was detained — “handcuffed, shackled and muzzled,” Riley said — at a local day program intended to teach him social and soft skills.
Arrests and disciplinary measures are more common among youth with disabilities, a recent study shows.
Riley said this is not OK.
In 2018, she filed a civil rights complaint, sounding the alarm on inequities in her son’s special education class in the Raytown School District. She persisted. As recently as last fall, she presented to the Kansas City Public Schools board about the roadblocks students with Individualized Educational Plans (IEPs) and 504 plans face from the special education department when trying to access employment and college training.
The existing system was not cutting it.
So, in 2019 she founded The Transition Academy — a resource she wished existed for her son years ago.
In the four years since, Riley has become a compass for many families like the Mitchells who are drowning in a confusing patchwork of information. She advocates for her own son or provides spaces for other families, particularly Black families, who fear for their child’s safety and future.
Research supports the idea that students of color, particularly males, who also live with a disability fare worse. It begins in the classroom but gets worse in the real world.
“Students with dis/abilities, which in our sample skewed Black and multilingual (a category that, itself, skews heavily Latinx) were least likely to be supported and gain access to the full curriculum,” according to New York University’s study of charter schools in four states.
Not only are resources not readily available or visible, but overlapping inequities based on race, citizenship status and income also play a role.
Law professionals like Katherine Perez focus on those intersections. Perez’s sister, who has autism and intellectual disabilities, has been unable to find a job or attend post-secondary school.
Perez is the director of the Coelho Center for Disability Law, Policy, and Innovation and lives with a psychological disability. Her research looks at immigration law and disability, which has also been informed by personal experiences.
From a legal perspective, protections for vulnerable youth with disabilities are important to avoid the school-to-prison or school-to-institution pipeline. This is where diagnosis and policy converge.
“It’s what we call the medical versus social model of disability,” Perez added. “I don’t see it as my sister being incapable of those things. I see our structures as being not accommodating enough to include people like my sister.”
Barriers put families at a disadvantage. Perez knows.
Many are faced with seemingly limited choices that, later, may inhibit their young adult’s independence.
Increasingly, disability research shows that the timeframe between high school and post-secondary education is one of the most vulnerable and poorly supported times for youth with a disability.
The issues become most pronounced among people of color or those with lower incomes.
One recent study pointed to the failure of mental health support early on in a child’s life and a lack of adequate, coordinated community programs.
“Because of system fragmentation and insufficient collaboration and communication, obtaining these services can be challenging and many children are falling through the cracks,” the British Columbia Medical Journal study read.
Often, parents say resources are splayed out and difficult to find. Then, when it comes time to apply, they face mountains of paperwork and lack of caseworker communication.
At the state level, Missouri vocational rehabilitation centers say they’re facing unprecedented turnover so the workers, often, are inexperienced.
This contributes to the backlog and frustration parents feel.
Though recognized by experts and people navigating these systems, new strategies and policies to break down barriers have been slow to emerge. And some regional programs simply are not what families want for their young adults.
“I want him to have real opportunities like every other graduate,” Michelle said. “I want him to have a real job where he has a 401(k), where he has benefits.”
She rejects the idea of sending him to a place that separates him from other people who don’t have a disability.
In the Kansas City area, there is a lack of one central information hub to find vocational resources. That issue is compounded by what is available.
Disability scholars say some current programs in the region should be phased out. For example, one program in Missouri has been in the national spotlight for supporting sheltered workshops. Critics say these workshops are antiquated and limit independent living goals because they segregate young people with disabilities and pay subminimum wages.
Historically these programs began as a stepping stone, a way to transition people into community-based employment.
In Missouri, these workshops became popular in the 1960s, often founded by guardians and family members who had no other option. Today, the method has become less popular.
An investigation by ProPublica and The Kansas City Beacon found that Missouri is one of the last sheltered workshop holdouts in the U.S. One critic called Missouri the “king of sheltered workshops.”
One reason is its funding model. Under 14(c) in the Fairl Labor Standards Act from 1938, states allocate funds specifically for “work centers” such as workshops, day rehab or other programs. Supporters say that new bills targeting workshops eliminate opportunities, rather than expand, for young adults with disabilities.
Critics say sheltered workshops keep people in a holding pattern, unable to progress to their full potential. Local employers are taking note. Some, like Job One, are leading the way in the region in opting out of the sheltered workshop model come next year.
In the past 10 years, the organization has gone from serving most folks in sheltered workshops to serving roughly 300 people in the community.
“We really are in kind of a big transition,” said Anne Hochstein, chief operating officer. “We have a very small footprint left that is still in the sheltered workshop out in Independence. … We’ve really embraced community employment.”
Hochstein said society has become more open to including folks with disabilities. Jobs should be the same way, though the process is still in its infancy.
Job One, headquartered in Grandview, Missouri, is one of the organizations that supports people with disabilities with job training and employment goals. By 2024, Job One plans to step away from sheltered workshops and will not renew their 14(c) certificate.
The hope is to use that money for integrated, community-based jobs.
Karrie Shogren, director of the Kansas University on Developmental Disabilities, said often the issue is about the person’s choice and centering their desires before imposing programs that might not help their future goals.
“Too often people with disabilities haven’t been given access to opportunities to learn and grow through that process,” Shogren said. “But that’s something that’s important for all people.”
She said it is a key factor in a person’s economic self-sufficiency.
In a paper she co-authored, Shogren and her colleagues held focus groups to learn from people living through transition programs and in work centers such as sheltered workshops. The 2020 study found that “integrated employment” offered more long-term stability for a large percentage of folks and that people with disabilities should be given the chance to opt into that first.
Sheltered workshops reduced the chances of graduating into the general workforce, as illustrated by one focus group participant: “Once you go in there, you almost never get out.”
That might have been the plan to support parents in the 1960s. But for many parents in 2023, building autonomy and a self-sufficient life is key once they are unable to support their adult children.
For policy leaders, disability justice advocates and researchers, practical and societal support is behind the curve. Some, like disability justice leader Mia Ives-Rublee at American Progress, say public perception should shift to seeing what people are able to do, not what they cannot.
For parents like Riley and the Mitchells, the evolution of barriers is a long-term problem. Their child’s adulthood is on the line. Their plea: for society and systems in place to consider the success of young adults living with disabilities.
Gregory Mitchell said: “We’re just really going round for round just trying to find every opportunity available for him.”
Michelle nodded. “We’re trying to get him on a pathway to be as independent as possible. Safe as possible, happy as possible,” she said.
The case of the Mitchell and Riley families are mere examples of what happens to thousands of families in the Kansas City region. We invite you to share questions, concerns or your stories as we continue reporting our series on disability resources, barriers and policies. Submit below:
Vicky Diaz-Camacho covers community affairs and leads the journalism engagement series, curiousKC, for Kansas City PBS.