By Nicole Ward, Data Journalist, Research & Innovation
Average reading time: 5 minutes
This story was originally published on Dallas Innovates. Read it here.
There are estimated to be more than 70 million individuals with disabilities in the United States, according to the CDC. For this population, they struggle to function in a world that was not built to accommodate people’s differences, which costs them extra time and effort to complete every task, every day.
Time isn’t the only “disability tax” — social and financial costs also rack up for 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 is intimately familiar with balancing costs and enabling loved ones to live their best lives.
Voelker and his wife, Kris, first noticed their son had sensory challenges when he was a toddler. Sensory Processing Disorder (SPD) was followed up by an Autism Spectrum Disorder (ASD) diagnosis a couple of years later. Voelker’s son is 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,” Voelker said. 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.
Today, Voelker’s son has a part-time job at McDonald’s and 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.”
Voelker also greenlit the construction of a sensory-sensitive playground at Cottonwood Park. Playgrounds 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.”
Working within the system
For Meghan Kelley Wehner, being a caregiver is second nature. She and her husband, Tyler, have three children. 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 he moves 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 it.
“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.
“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 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.
Read the full story on Dallas Innovates.