Mobility equity: New law inspired by CAIT research should benefit autistic adults

Oct 30, 2017 | News

In May 2017, Governor Chris Christie signed legislation that takes an important step toward meeting the transportation needs of New Jersey citizens with developmental disabilities.

The legislation was inspired by the final report from a two-year research project led by CAIT project manager Dr. Cecilia Feeley and coauthors Dr. Devajyoti Deka and Andrea Lubin from the Voorhees Transportation Center (VTC), and Melanie McGackin of Autism Family Services of New Jersey.

The new law establishes an 11-member task force to study and make recommendations that would expand transportation options for adults with autism spectrum disorder (ASD). In the General Assembly, Majority Leader Louis Greenwald and Democratic representatives Pamela Lampitt, Daniel Benson, Marlene Caride, and Nicholas Chiaravalloti sponsored the bill. Senate authors and sponsors were Paul Sarlo, Bob Gordon, and Nilsa Cruz-Perez.

For 70,000 adults with autism in New Jersey, getting to and from work, medical appointments, continuing education classes, and social or community activities is not as simple as hopping on a bus or even summoning Uber.

“Since many individuals with autism spectrum disorder cannot drive, making sure they have access to transportation is crucial,” said Lampitt (D-Camden/Burlington). “This [task force] creates a space for [all the stakeholders] to come together and devise ways to make the system more equitable.”

The Rutgers project surveyed more than 700 adults with autism and their families about challenges they face finding suitable transportation. The researchers hosted listening sessions with 25 public and private organizations and held focus groups with adults on the spectrum and their parents/guardians. These groups said their “dream” transportation option would be reliable and frequent; pick them up near home; and operate beyond “9 to 5” to make socializing easier. They also wanted training that empowered them to use public transit alone and confidently. Both parents and adults with ASD lamented that transportation instruction wasn’t offered in school.

“Unfortunately, we found that safe mobility skills are not often taught during young adults’ school transition or covered in their individualized education plans (IEP),” said Lubin, senior research specialist at VTC.

Most research participants had some knowledge of public transit, but few had used the scant services available. Instead, 68 percent had parents or friends drive them; 72 percent of caregivers said they missed some of their own activities to provide rides; and 72 percent of adults with ASD said they miss things they want to do because no one is available to give them a ride when they need it. Clearly the arrangement is inconvenient and sometimes frustrating for everyone involved. But more importantly, it also stands in the way of autonomy for an adult with ASD.

Twenty-eight percent of adults with ASD said they walked when they needed to go somewhere. This too can be problematic; walking not only severely limits range of travel, it also is often impractical, and sometimes even unsafe.

Deka noted, “The study found that many adults with ASD lack basic safe-walking skills, which contributes to isolation because they don’t feel free to move around.” The survey showed 54 percent had trouble crossing roads, and 45 percent had difficulty judging distances between themselves and oncoming vehicles.

Benson (D-Mercer/Middlesex) pointed out that solutions need to go beyond systems and services: “[It also means] making sure these men and women receive the training they need to walk or use public transportation [and] reach their destinations safely.”

The final research report, Detour to the Right Place: A Study with Recommendations for Addressing the Transportation Needs and Barriers of Adults on the Autism Spectrum in New Jersey, details these and other obstacles that those with developmental disabilities—and their caregivers—face just trying to conduct normal daily activities. The report offers recommendations for overcoming barriers that frequently hobble this population’s ability to live on their own, hold a job, or have full, rewarding social experiences.

“There is a growing need in our state for transportation services [that allow] adults with ASD to assert their independence and improve their quality of life,” said Greenwald (D-Camden/Burlington). “This task force will … hear what adults with ASD need, and address those needs accordingly.”

“As the parents of adults with ASD [get older] and perhaps become less able to care for their kids, they begin to worry,” said Chiaravalloti (D-Hudson). “[A goal] of this task force is to make sure adults with autism can live independently and to give their parents some peace of mind.”

The Mobility and Support Services Task Force will consist of commissioners from six New Jersey State departments plus the Secretary of Higher Education and four experts from the public. The group will submit a report to the governor and the legislature within one year of its formation.

The original Rutgers research project was supported with funding from the Governor’s Council for Medical Research and Treatment of Autism.

More on the web: The final research report and executive summary are available for download at Detour to the Right Place or Autism Report

Photo: Cecilia Feeley/Rutgers CAIT