People with disabilities—a group estimated to include more than 70 million individuals in the United States, according to the CDC—will tell you standard units of measure don’t apply.

For example, there’s the idea that everyone has the same 24 hours in a day. But think about the person using a mobility device to navigate a public transportation center and finding that the elevator is out of service. Or someone who is hard of hearing, trying to follow along in a webinar without subtitles. Functioning in a world that was not built to accommodate people’s differences costs them extra time and effort to complete every task, every day. 

And time isn’t the only “disability tax” — social and financial costs also need to be considered by people who have disabilities and their caregivers. According to the American Academy of Pediatrics, nearly 15% of families with children who have chronic health conditions, including autism, epilepsy, and cerebral palsy, have scaled back their participation in the workforce. 

That figure jumps to more than 40% in families of children with an intellectual disability. And that means less money to run the household; reducing work hours or leaving the workforce altogether costs families in the disability community an average of $18,000 per year in lost earnings. 

Meanwhile, purchasing adaptive or accessible products can be more expensive than families have budgeted for. For example, according to the National Highway Safety Transportation Board, a new car with adaptive equipment could cost up to $80,000.

Navigating sources of support  

Paul Voelker, Clay Boatright, and Meghan Kelley Wehner are three Dallas-Fort Worth residents who are intimately familiar with balancing costs and enabling their loved ones to live their best lives. Voelker and his wife, Kris, first noticed their son had sensory challenges when he was a toddler. 

“Which is that classic, you know, trouble with loud sounds, tight-fitting clothes collars, food textures,” said Voelker. 

Sensory Processing Disorder (SPD) was followed up by an Autism Spectrum Disorder (ASD) diagnosis a couple of years later—around age five. Voelker describes him as smart and relatively social, but they decided to homeschool him because of the ongoing SPD, ASD, as well as anxiety and OCD, for which he takes medication. 

“My wife was a teacher at Fairhill, which is a school in North Dallas for kids with learning differences. So, she was keenly aware of learning differences and learning styles.” 

She was the perfect person to teach their son, but that also meant they became a single-income household. 

While his anxiety prevented him from testing well and earning his GED, today, the Voelker’s son has a part-time job at McDonald’s. 

“To this day, he does some head nodding, and he will sometimes stare off into space to comfort himself. But he literally skips into work, he’s so happy to be there. And the team treats him like gold.”  

His son also keeps busy at UT Dallas, participating in classes and programs through the Callier Center, as well as taking tennis lessons there through Acing Autism.  

Voelker’s understanding of ASD has grown through personal experience, which he applied as the mayor of Richardson. He made a concerted effort to learn about others in the disability community, forming a blue-ribbon committee to determine how the city could better serve all people. 

“I reached out to some early-stage companies that were doing some really cool things in transportation and figuring out, for example, how you can more safely cross the street as a blind person. We had programs with organizations that would convert Braille to spoken word, to provide additional options for people.” 

He also greenlit the construction of a sensory-sensitive playground at Cottonwood Park. Playgrounds can be a source of connection, community, and fun. They first emerged in the United States in the early twentieth century, but there’s been little innovation or effort to make them accessible to all.  

“It’s a fairly recent phenomenon — creating playgrounds that can be used by children with varying abilities,” said Voelker. “And I’m really proud of the one we were able to build.” 

He and his wife helped establish Access+Inclusion at The Eisemann Center and put together the first program in the series with Kevin Spencer, creator of The Magic Therapy Program and Phil McKinney, CEO of CableLabs who started the nonprofit Hacking Autism, which evolved from a bunch of people in tech sitting around a table trying to improve interfaces, to a mission-driven organization trying to improve the employment situation for people who have disabilities. 

But despite all he learned being the father of an Autistic child, and being in local government, Voelker still finds it challenging to navigate certain financial costs, and insurance. He says it’s not something where you can just hope for the best. 

“I was just on a phone call with Social Security, yet again, for long-term disability for him, and this has been over a year—every time I have an appointment, they cancel. Well, this time I got through, and now they’re saying it’ll be almost 300 days upon the final interview before the claim will be made.” 

Leveraging resources  

Clay Boatright and his late wife learned their twin girls had developmental disabilities at their two-year well-baby checkup. He details the realization in his book, God’s Plan, Our Circus: A Family Odyssey Through Autism, Death, and Reinvention. Each parent was holding one twin, looking through a checklist of milestones and neither checked any of the boxes. 

Clay Boatright and his twin daughters, Mia (top photo) and Paige

“The pediatrician said ‘Yes, something unusual is happening here,’” recalls Boatright. “He sent us over to Easter Seals where they did another assessment, and the original diagnosis was what we now call intellectual disabilities—and then the autism piece was added soon thereafter.” 

He adds, at that time, in 2002, he knew the word, but not all that it implied; the full impact bore out over the next few years. When they were five, it became clear that their disabilities were on the severe end of the scale. 

Boatright recalls planning outings with the twins was trickier than with their older sister because ‘tantrum management’ had to be considered. If one or both twins were triggered by something, how easily could they be removed? 

“One of the great things that comes to mind is Studio Movie Grill, which holds showings at specific times for parents of kids with special needs. They would change the lighting a little bit, maybe lower the volume. And from a parental perspective, you knew that everyone had chosen that showing specifically, so if a kid started screaming, it was okay. It wasn’t like being in a room full of neuro-typical people, where that could cause problems.” 

Today, Paige and Mia are 24 years old, living in a group home run by Avid Quality Care in Little Elm. They don’t speak and need help with activities of daily living, which include things like getting dressed and using the bathroom. They’re visited frequently by their father, who, depending on the week, hangs out with the twins at their home, takes them out for lunch, or brings them over to his house. Paige and Mia’s skills continue to grow due to the variety of experiences in their lives.   

Working within the system  

For Meghan Kelley Wehner, being a caregiver is second nature. She and her husband, Tyler, have three children: five, three, and a one-year-old. But even before they married and started a family, she remembers having a serious conversation about what the future would look like.  

“We were dating, and I told him that I was a package deal—that one day we would assume guardianship of my younger brother, Jordan,” says Kelley Wehner. 

Born with Apert Syndrome, the plan has always been for Jordan to live full-time with their parents, until around-the-clock care becomes too hard for them to handle, and then he’ll move in with Kelley Wehner’s family. She’s been working with their mom and dad for years to understand the nuances of the trust that has been set up in his name; the legal ramifications of inheriting property or other assets; and navigating the state and federal regulations as they pertain to his eligibility for benefits. It’s that piece, she says, that is unnecessarily punitive. 

“The goal is for individuals to become contributing members of society, right? Earning their own income, receiving corporate benefits. And let’s say Jordan does get that at some point, but then loses that job. He would have to start over—reapplying for government benefits, but the waiting list is 15 to 18 years. That is a risk we are not willing to take.” 

What’s more—those who rely on social security to make ends meet cannot earn more than $1,620 to $2,700 per month, depending on their disability, or they will have to forfeit them.  

“There’s legislation proposed to raise that limit, but even then, it’s not enough to pay rent, groceries, utilities, and have some left over for an emergency. And that’s not even getting into medical care or special services and transportation,” said Kelley Wehner. 

Asset limits were created in 1974, when the program launched, and have been frozen since 1989. 

For Jordan, even if the asset limit was raised substantially, Kelley Wehner says her brother is too trusting to live on his own. He sees the good in everyone and would not be able to discern ill intentions that could result in being taken advantage of.  

“At some point, we’ll probably move to a place where he can have his own room, instead of retrofitting my office. But he’s Uncle J to my kids, and we’re lucky to be able to fill this forgotten space for people who need some help sometimes, rather than the full gamut of services.” 

Kelley Wehner, like Voelker, Boatright, and thousands of other families impacted by disability, relies on strategic planning and constant vigilance to navigate their unique paths through terrain that is remarkably common. 

For more information on the disability community, check out the Dallas Regional Chamber’s Disability Inclusion Toolkit.

Voices contributor Nicole Ward is a data journalist for the Dallas Regional Chamber.

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