Imagine finally finding the perfect job. It’s a job within your skillset and you’re confident you can successfully perform this job. You feel comfortable. You are building relationships with your coworkers, and it is an overall great environment to work in. But wait! Despite overcoming the many barriers you might face as an autistic person working, you’ve just encountered your biggest barrier yet…transportation! Something as simple as getting to and from work has now become a huge hurdle!
That’s our 28-year-old son Terrell’s story. A few years ago, Terrell had the opportunity to move into one of the Our Place Nashville homes. As we started the transition of his move to his new home, a job opportunity presented itself. He was extremely excited about his new job. However, of all the things that went into planning for this transition, we didn’t plan for the extensive transportation issues.
We knew that due to his anxiety about driving, he wouldn’t be able to drive himself. So, he would have to rely on public transportation, family, and friends. However, we ran into several other issues that we just weren’t expecting like public transportation not being available in the area, which would force us to utilize private transportation that can be quite costly.
With both of his parents and older sibling working, our only option was using Lyft which costs approximately $25-$50 round trip per day which had to be paid 5 days a week. Then came the issues of transporters running late or not showing up. Nevertheless, we still wanted to support him in his decision to assert his independence, so we paid the transportation fees to get him to and from work. We also set up a daily transportation plan, walked him through how to use ridesharing, and I set up all of his rides via the rideshare app. Terrell is still not comfortable with booking his own transportation. That is something that we will continue to work with him on mastering. When discussing his reluctance to book his Lyft ride, he says, “I don’t know what to do,” and he becomes stressed.
Then, recently, one of the scariest incidents took place in the 28 years of caring for our child. After several months of successfully working our daily transportation plan, Terrell mistook another car for his Lyft driver and opened the door which startled the driver who was carrying a gun. Luckily, the man realized that it was a mistake and took no further action, but it definitely frightened Terrell and the entire family. So now we take even more precautions when using the rideshare system, like being on the phone with Terrell when the driver arrives, carefully looking at the car, fully checking the license plate, and asking the drivers to identify themselves.
While transportation for Terrell has proven to have some challenges and is a problem for many people with autism and other disabilities, we have learned so much and found some great resources that have helped us along the way. We are blessed that Terrel has been enrolled in Employment Community First CHOICES (ECF CHOICES). We utilize the mileage reimbursement option to help defray some of the cost. Although it doesn’t cover all his transportation expenses, it has brought us some relief.
We have also been connected to someone willing to work with Terrell on learning how to book his transportation. This person will be hired through consumer direction of the ECF CHOICES program. She will also work with him on other independent skills.
So that’s our son Terrell’s transportation barrier story. Living with autism, trying to assert his independence through employment and individual transportation has in some instances felt like walking in a dark den that may or may not have lions and tigers. You never know what you’re going to experience. However, it has been a time of education and growth for Terrell and our family.
As we are continually advocating for our son, especially as we are aging, we want to ensure that Terrell has all the tools that he needs to successfully live independently, and transportation is one of those tools that Tennessee is in desperate need of having more accessible options for the disability community. I know that this is an area where work is being done. Some of the things we have voiced as advocates to legislatures are:
- higher pay for transportation drivers to reduce turnover rates,
- better management of route coverage so the rider does not have to be on the bus/van for long periods of time, and
- a review of all multiple funding areas to help the rider with transportation costs. If you must pay more in transportation to get to work than you would make for the day, that only puts more of a burden on the person trying to live their life independently.
We, as a community, need to make sure to voice our concerns about transportation matters. Anytime you can attend a meeting in person or virtually, please take advantage of the opportunity. We can also utilize email and mail letters to our public officials. Share your ideas on how to make transportation more accessible. I’m starting with this publication. Thanks to Pathfinder for providing the platform!
About the Author
Linda Brown, is a wife and mother of two sons. Her youngest son, Terell, is a person with a disability for whom she fiercely advocates. Brown is an Information & Referral Coordinator for Tennessee Disability Pathfinder, a statewide information and referral program that includes a multilingual phone/email helpline and website of resources. Brown brings both professional and personal experience to the position as a former administrator with Tennessee Early InterventionSystem and Vanderbilt University, a parent of a son with a developmental disability, founder of The Arc Rutherford County, past president of The Arc TN, Board Development Committee Chair for The Arc TN and a Partners in Policymaking graduate. In her role, Brown connects individuals with disabilities, their support networks, and public/private agencies to appropriate resources and other related social services in Tennessee, provides training presentations, and assists with maintaining Pathfinder’s online directory of resources.
