Interactive Autism Services Map Shows Inequality, Helps Georgians Find the Services They Need
Posted September 13, 2021
Think of how difficult it can be to fit your doctor’s appointments into your busy schedule. Throw in checkups for your child or a trip to the vet for the dog, and life can start to feel overwhelming.
Now, imagine your child was diagnosed with Autism Spectrum Disorder (ASD). Suddenly, the number of services they need — behavioral, physical, speech — has risen astronomically.
And you’re a single parent.
And you work two jobs.
And you rely on public transportation, because you don’t have a car.
It would feel impossible to get every appointment you need. Yet, many of the primary caregivers for children with ASD in Georgia navigate this maze every day. They know early intervention therapies are critical for their child’s development, but they simply can’t access them.
Jennifer Singh, associate professor in the School of History and Sociology, is hoping to help. She spent two and a half years in a clinic that serves children with developmental disabilities in Atlanta, where she observed parents get diagnoses for their children but face roadblock after roadblock in getting the recommended therapies.
“Many parents would tell me the same thing: ‘I feel like I’m losing out,’” said Singh.
And they are.
According to Autism in Numbers and Stories, another project by Georgia Tech faculty, the earlier a child receives treatment, the better the outcome will be over their lifetime. Early treatment can help 43% of children with ASD be successfully included in regular classrooms rather than special education, an opportunity that can help enable them to live an independent life.
“It’s like having a stomachache all the time,” said Singh. “Think about it: When you're not feeling well, you can't learn and develop like you optimally can. So that's the whole point — getting kids the services that they need so they can keep learning.”
Her new interactive Autism Services Map aims to do just that.
Singh brought together an interdisciplinary team to create the online map: Freyja Brandel-Tanis, a dual master’s student in the School of City and Regional Planning and School of Civil and Environmental Engineering; Elise Li Zheng, a Ph.D. student in the School of History and Sociology; and Shristi, who recently graduated with a Master’s in Computer Science. With their combined skill sets, they built a practical tool for caregivers in Georgia and an additional data visualization of the autism services cliff, where the availability of services drops off sharply once children leave high school.
With the map, users can easily find the closest service providers to their location and apply filters like whether or not they’re open late, which insurance they accept, if they have bilingual staff, and more. Then, they can export the list, with phone numbers and addresses, onto an Excel spreadsheet and download it to their computer.
“Having a wide variety of data in a single portal, especially one that is easy to use, really changes the game for so many things,” said Brandel-Tanis. “Even as a work-in-progress, I feel that what we've produced is so much more usable than the sites where we got the data.”
This is important because the map is not just for caregivers of children with ASD in Georgia, but for autistic adults as well.
“As seen in our service cliff visualization, only 39% of service providers in our current data set serve adults,” said Brandel-Tanis. “Expanding provider information access to autistic adults was central to my motivation to work on this project and is crucial to improving people’s ability to navigate the healthcare system and find providers that work for them. There are many existing barriers to care, but we hope our tool, created with feedback and focus groups, can help decrease them.”
Singh and her team also developed a data visualization tool that layers on top of the map. It applies data from the CDC/ATSDR Social Vulnerability Index, which measures things like the percentage of people who are unemployed or living in mobile homes or earning below the poverty line in each county. The resulting visuals give a stark picture of just how unequal access to autism services is in Georgia.
For example, Randolph, Stewart, and Warren Counties have the highest percentages of households without a car in Georgia (16-18.5%) but don’t have any autism service providers within them. In comparison, only 2.6% of households in Fayette County don't have a car, but there are five service providers in the area. Due to a history of structural racism in the state, services are more widely available in affluent, white areas in North Georgia than in predominantly Black areas of metro Atlanta. While Singh's map doesn't change these inequities, she hopes that as it incorporates new data — such as the location of Medicaid claims to show inequalities in state services distribution — it can help influence policy in the future.
For now, Singh is eager to get her map into the hands of autism service care coordinators and caregivers to test the functionality and start saving time, energy, and stress for families of children with ASD in Georgia. The changes she observes in children in the clinic who get the services they need are remarkable, she says, and the gratitude of parents who see their child back on track to learning keeps her going.
“It's not an easy road by any means,” says Singh. “It takes a team of people and a whole cadre of services to do that.”
Explore the interactive Autism Services Map and Autism Cliff Visualization. Then, connect with the School of History and Sociology on Facebook, LinkedIn, Twitter, and Instagram to keep up with our students, school news, and upcoming events.
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