Transportation barriers: building mobility without driving

Malik does not drive and is unlikely to and his family stopped waiting for that to change about two years ago and started building what they now call the ride web. Paratransit for the day program three mornings a week. His grandmother for the Wednesday dental appointments. Medicaid Non-Emergency Medical Transport for the neurologist visits downtown that his grandmother cannot make in her Honda. His uncle for Saturday groceries. A hired driver from the agency for the two evenings his sister is at her second job. Uber, and only Uber, for the trip home from Thursday choir practice, and only after six months of practice with his mother sitting in the passenger seat. Malik is twenty-four and he gets everywhere he needs to be. It took his family eighteen months and a spreadsheet. This is the post about the spreadsheet.

What Curry et al. actually found

The Children’s Hospital of Philadelphia’s Center for Injury Research and Prevention, led by Allison Curry, published a study in Autism in 2018 that quantified something families already knew. Only about one in three autistic young adults obtains a driver’s license by age twenty-one. The comparable rate for their non-autistic peers is roughly four in five.

The gap is not a failing of the autistic young adults. It is a design reality. Driving requires simultaneous processing of visual, auditory, kinesthetic, and social information at highway speed while inhibiting anxiety, managing sensory overload, and responding to unpredictable events created by other drivers. For many autistic adults, driving is either not the right tool or not the right tool yet. The plan for their mobility has to be built around that fact, not against it.

Paratransit, in plain English

Paratransit is the ADA-required curb-to-curb transportation service that most metropolitan transit agencies operate parallel to their fixed-route bus and rail systems. Under the ADA, any person whose disability prevents them from using fixed-route transit must be offered paratransit at a fare no higher than twice the fixed-route fare.

Eligibility is not automatic. It requires an application, often a functional assessment, and a certification letter. The application takes sixty to ninety days to process in most cities. Certification is typically good for three to five years and must be renewed. Apply before you need it. The families I have watched apply the week they needed it wait three months while the crisis compounds.

Paratransit trips must be booked in advance, usually one to three days ahead. Same-day service is generally unavailable. Windows are wide, both for pickup (typically thirty minutes) and drop-off. Plan around this. It is not a taxi. It is a shared-ride service, and other passengers may be picked up along your route.

NEMT and the appointment problem

Non-Emergency Medical Transportation, or NEMT, is a Medicaid benefit that covers transportation to and from medical appointments for eligible beneficiaries who have no other means of transportation. NEMT is free to the beneficiary. It is not paratransit and it is not funded by the transit agency. It is funded and administered by the state Medicaid program, often through a contracted broker.

In most states you enroll in NEMT once and then book trips through the broker forty-eight to seventy-two hours before each appointment. The broker sends a van, a rideshare, or occasionally a mileage-reimbursed volunteer driver. Complaints about NEMT quality are common. So is the fact that it is often the only affordable option for a downtown neurologist appointment.

Enroll now. Practice booking a trip for a low-stakes appointment before you need it for a specialist. The training curve is real.

Travel training as investment

Nearly every mid-sized and larger transit agency in the United States offers free travel training. A trained instructor rides with your adult, teaches him to read the bus schedule, teaches him to pay the fare, teaches him to identify his stop, teaches him what to do if the bus is late or the route changes. Over weeks, the trainer transitions from full support to shadowing to independent trips.

The families who invest in travel training end up with an adult who can independently reach one or two important destinations. That independence is life-changing. It reduces family driving load, it builds his community access, and it seeds skills for further travel expansion later.

Travel training does not work for every autistic adult. It works for many. Ask your transit agency whether they offer it. Ask specifically for a trainer who has worked with autistic riders. If your agency does not have one, ask what agency in the region does. Cross-jurisdiction referrals are common.

Rideshare, honestly

Uber and Lyft have made spontaneous transportation possible in ways paratransit never could. They have also introduced risk. Drivers are strangers. The rating and vetting process is imperfect. A young autistic adult in a stranger’s car in an unfamiliar route is exposed to safety risks that require preparation, not avoidance.

The plan that works: use rideshare only for return trips home from a known origin, after weeks of practice with a family member in the car, with the ride-sharing platform configured to send real-time location to a family member on every trip, with a laminated communication card in his pocket, with the destination pre-programmed and the driver notified in advance that the rider is autistic and communicates in short sentences.

Never a first-time route. Never late at night. Never before he has run through the safety script twenty times in low-stakes settings. Rideshare is a tool. Like any tool, it has an appropriate use.

The ride web

The concept I keep returning to for adult mobility is the ride web. Not one mode. Not one driver. A layered system of named modes and named people that covers every regularly recurring trip and provides redundancy for the times a primary option fails.

Paratransit for day program three days a week. Family for the Wednesday dental appointments. NEMT for the neurologist. An uncle for Saturday groceries. A paid driver from the agency for two evening shifts a week. Rideshare for the trip home from choir practice, only after months of practice. Each trip has a primary and a backup. Both are written down. The web is posted on the refrigerator.

The web takes twelve to eighteen months to build well. It is worth the eighteen months. It is the difference between an adult whose life is bounded by the driveway and an adult whose life includes the town.

When the plan fails and you have to rebuild

Paratransit certification will lapse. A hired driver will quit. An uncle will move. A rideshare will show up thirty minutes late. NEMT will send a car that will not accommodate his wheelchair even though you asked. The ride web is not static. It is a living system.

Build in a monthly review. Fifteen minutes. Look at the trip log. What broke this month. What worked better than expected. What backup did you actually use. Update the refrigerator sheet. Rebalance the load. This is the maintenance work that keeps a system running for years, and it is the work that families under-invest in until a failure cascades.

The long game

The individual mobility plan is what you build for your own family this year. The systemic mobility plan is what you build with other families over years. Paratransit budgets, NEMT quality, travel training program funding, and the presence or absence of rideshare accessibility standards are all political questions that get answered in your state legislature and your city council.

Show up. Testify. Submit written comment during transit planning processes. Join your local Committee on Transportation Accessibility if one exists, or start one if it does not. The Easterseals Project ACTION and the National Aging and Disability Transportation Center both publish playbooks for local advocacy. The next generation of autistic adults in your city will benefit from the paratransit system your generation of families fights for or accepts.

Jim Palasty is the founder of OASIS for Autism and a single father of an adult autistic daughter in Michigan.