Transportation & Mobility Issues: A Report on the Needs and Barriers of Adults on the Autism Spectrum Andrea Lubin, M.S. Alan M. Voorhess Transportation Center Rutgers, The State University of New Jersey Melanie McGackin Autism Family Services of New Jersey Cecilia Feeley, Ph.D. Center for Advanced Infrastructure & Transportation Rutgers, The State University of New Jersey
Today s Focus: Presentation Outline >> Importance of transportation & mobility skills Overview of several transportation options Rutgers Report highlights: Detour to the Right Place Survey & focus group findings Study conclusion & recommendations
Why Transportation is Important >> All persons, including adults with developmental disabilities such as autism spectrum disorder (ASD), need or may seek to access the following: Employment and/or vocational training Recreation/Social opportunities Healthcare Continuing education Daily living trips e.g. shopping TRANSPORTATION is the essential link uniting these needs BUT is too often overlooked
Why Transportation is Important >> Access to transportation is vital - it directly impacts quality of life One needs to know what transport options are available & how to travel to get anywhere We train for employment, but overlook how to access an actual job We train for independence but overlook how to access daily errands, medical care, recreational activities, visiting family & friends Individuals with disabilities are considered a Transportation Disadvantaged Population
Why Transportation and Mobility Skills Are Important >> Source YouTube https://www.youtube.com/watch?v=dbaflqlotz8&list=uusv7fitws6m5q2v8dsqvf0q
Before Traveling Gain Community Safety Skills >> Occupational ID Police Officers and First Responders I.D. Card Know What to do if Communicate on cell via voice or text Introduce levels of independence when appropriate Use technology when available
The Road to Independence >> Does not happen in a vacuum Team effort Focus on best outcome for each individual Take early steps Focus on strengths Allow for mistakes Dignity of risk More support may be needed at first Some will need continued support
Transportation Options in the Philadelphia Area >> Walking Driving Local Bus Interstate Bus Rail Light Rail Subway Ride Shares (UBER/LYFT) Paratransit ADA Complementary Paratransit Taxis Shuttles Bicycling Ferry/Boats Airplanes
Costs for Common Transportation Options >> Car Ownership - $$$$ - Gas/Maintenance - Insurance - Registration Walking Public Transportation $ - Bus Fare Paratransit Services $$ - Paratransit Fare - Can be twice of fixed route services
Pedestrian Skills >> Introduce early Walk in your community Look for safest routes INSTEAD of shortest routes Work on Street Crossing and Intersections Introduce levels of independence when appropriate
Driving Skills >> Driving Skills Source YouTube https://www.youtube.com/watch?v=b_hqrk5c8va
Certified Driver Rehabilitation Specialists (CDRS) >> Pre-Driving Evaluation Behind the Wheel Evaluation Driving Training Lessons Division of Motor Vehicles (DMV) Road Test Referrals to Special Services
Working with a CDRS >> Prescription Required from a physician stating driving evaluation and training as necessary is needed Possess a valid permit Schedule the appointment All are specially trained for driving Some CDRS specialize with seniors or TBI Many CDRS are Occupational Therapists who specialize in driving Can assist with Vehicle Modifications
CDRS in the Philadelphia area >> Certified Driver Rehabilitation Specialists Philadelphia VA Medical Center, Philadelphia Bryn Mawr Rehab Hospital, Malvern Moss Rehab Driving School, Jenkintown Genesis Rehab Services, Phoenixville
Public Transit Services >> Types of Public Transit Services Local Buses Commuter Buses Light Rail Subway Rail ADA Complementary Paratransit Services Community Transportation
Public Transit >> Source YouTube https://www.youtube.com/watch?v=mpb5wpvpsu8
Managing Expectations >> A key reason people do NOT use public transportation is fear Experience can reduce or eliminate fear Build awareness from an early age Knowing what to do can remove fear Build and use supports to assist travel ex. GET Going Guide
Travel Instruction / Travel Training >> Travel Instruction/Travel Training is a spectrum of services designed to introduce and teach people with disability, older adults & others the skills necessary to travel safely and independently within home, school, and/or community environments.
Different Types of Travel Training Services >> One-on-One Travel Instruction Small Group Travel Training In-school Travel Training Seminars for professionals supporting transportation disadvantaged persons
Paratransit Services >> A term for many types of shared transportation utilized by transportation disadvantaged populations that fall between a private auto & the conventional bus. These services fall in three general categories: curb-to-curb, door-to-door or door-through-door
Paratransit Services >> Paratransit services may include: ADA complementary Paratransit County Providers Municipal Providers Nonprofits Eligibility requirements may include: Application In-Person Interview/functional assessment Doctor s Referral/Form Medicare/SSD Financial Information
Paratransit Services Eligibility Assessment >> Source YouTube - https://www.youtube.com/watch?v=rktapnp6obg&list=uusv7fitws6m5q2v8dsqvf0q&index=1
Rutgers Research Report >> Literature & Data Review Key Informant Interviews Statewide Survey Focus Groups Executive Summary & Technical Report http://cait.rutgers.edu/autism-survey
Background of Study >> Research Team Rutgers CAIT, Rutgers VTC, & Autism Family Services of NJ Transportation research and data have been limited for adults with ASD. Travel data collected is for persons with disabilities not persons with ASD Study Goal: Gain insight about the transportation barriers experienced by NJ adult ASD population Study Goal: Identify characteristics and traits found in adults with ASD & their impact on transportation choices
Statewide Transportation Survey >> Survey focused on: Trips including those not taken Traveling to Employment Walking Driving Passenger Public Transit Paratransit
Survey Results: How Adults with ASD Regularly Travel >> Ride with parents or family 68.3% Walk 28.6% Ride with friends 13.9% ADA Complementary Paratransit 12.5% Ride with volunteer driver 11.9% Taxi or for hire vehicle 7.4% Public Transit Bus 6.4% Public Transit Train 5.4% Drive 3.1%
Survey Results: Impact of Autism >> Respondents cited ASD as preventing travel by: Driving an automobile/van 62% Using Public Transit 30% Flying in an airplane 27% Walking 6% Riding as a passenger in automobile/van 4%
Survey Results: Transportation Availability >> Transportation to work/employment Transportation to education, vocational or job training Don't Know 10% Don't Know 19% Not Available 23% Sometimes Available 28% Always Available 30% Not Available 19% Sometimes Available 26% Always Available 45%
Survey results: Driving >> 9% of adults with ASD had a driver s license Driver license often obtained for ID purposes, not to drive 61% of drivers with ASD have difficulty driving 26% of drivers with ASD never drive 24% of drivers with ASD drive almost daily Difficulties with Driving Dealing with traffic 55% Distractions near the road 34% Judging distances 28%
Survey Results: Public Transit >> 61% of adults with ASD never used any form of public transit 32% of those using public transit received travel training Obstacles to using public transportation Individual doesn't know how to plan a public transportation trip 51% Public transportation service not available where he/she need to go 48% Worried about how other passengers will treat the individual 44% Worried about public transportation driver friendliness/helpfulness 43%
Survey Results: Walking >> 54% of adults with ASD did NOT know how to cross street safely Barriers to walking in neighborhood No destinations nearby 25% Traffic speed or amount of cars 25% Absence/poor quality of the sidewalks/pathways 17% Poor quality of the street crossings/intersections 12% Difficult aspects of walking Judging the distance and/or speed of cars 45% Crossing a street 41% Dealing with distractions while walking 40% Too many cars or too much traffic 37% Difficulty determining directions/route 35%
Survey Results: Key Findings Summary >> Respondents mostly travel as passengers of cars driven by their parents or other family members Adults with ASD equate driving with independence, but very few obtain driver s licenses or drive Many adults with ASD do not possess basic safe walking skills such as crossing roads (54%) and judging distances to oncoming vehicles (45%) Adults with ASD experience many difficulties that prevent them from participating in activities that others take for granted, including employment Persons with ASD have many travel-related concerns and barriers that others do not have Traveling for education & training, healthcare, shopping, and social & recreational purposes is more common and more important than traveling for employment
Focus Group Findings>> Conducted 6 focus groups with 41 individuals 4 with adults on the Autism Spectrum 2 with parents and/or guardians Delved into topics beyond Key Informant Interviews & Survey
Transportation & Mobility: Focus Group Adults with ASD >> Participants used various transport modes, but most common was car passenger driven by family Learned how to use mode(s) from parents Desired destinations varied greatly and included many social & recreational trip purposes Feeling isolated and experiencing depression and diminished confidence due to transportation issues
Transportation & Mobility: Focus Group Adults with ASD >> Walking Participant interest but lack of destinations & safety concerns Fixed-route Public Transit Satisfaction among those using PT due to factors including service reliability & lack of service window, but few using Paratransit Many use and cite satisfaction with curb to curb features, reliability, little crowding and friendly operators, but dislike service window and advanced reservation requirements Driving Strong desire to attain driver s license at some point but few have license. Those that drive report benefit of behind the wheel practice and learning how to self regulate
Transportation Barriers: Adults with Autism In Their Own Words >> I spend most of my budget on transportation. Driving is a matter of financial survival so I can get to work. I need information on how to use public transit services instead of information on the food pyramid.
Transportation & Mobility: Focus Groups with Families >> Parent is often the sole transport provider for the adult child; accept this reality, but presents difficulties Transportation not included in IEPs nor is travel instruction Post-school transition challenging to navigate Lack of transportation limits ability to pursue employment, educational, social & other opportunities
Transportation & Mobility: Focus Groups with Families >> Walking Some interest but lack of destinations & safety concerns Fixed-route Public Transit Significant safety concerns expressed. Travel training and transit operator training on ASD needed for mode viability Paratransit Generally satisfied with paratransit as a safe mode, but acknowledged negatives of limited geographies & restricted trip purposes Driving Too many variables associated with driving, even with instruction and practice
Transportation Barriers: Families in their own Words >> Our children fall off the cliff at age 21. It [transportation] is a lynchpin. If you find the perfect program, without transportation, it s useless. My son is going to lose his job over lack of transportation. I want to live one day longer than my child.
Research Study Findings >> Very little research about transportation issues encountered by adults with ASD Availability of accessible public transportation is crucial Adults with ASD mostly travel as passengers in cars driver by their parents or family members Adults with ASD see driving as independence but very few of them drive or obtain driver s licenses Many adults with ASD do not possess basic safe walking skills such as crossing roads & judging distances to oncoming vehicles Post transition from school is the most difficult time Travel education and training during school years is minimal to nonexistent and should be included in IEPs Improved societal awareness of adults with ASD is needed
Research Study Recommendations >> 1. Establish Transportation Autism and Developmental Disabilities Research Center. 2. Develop Statewide Steering Committee. 3. Develop & include in IEPs transportation educational training programs for students. 4. Educate families and communities on transportation and mobility options for adults with ASD. 5. Research the relationship between employment and transportation for adults on the autism spectrum. 6. Pursue locational efficiency strategies of entities supporting adults with ASD. 7. Conduct review of infrastructure design practices. 8. Integrate the transportation needs of adults with ASD with Intelligent Transportation Systems (ITS).
Research Study Recommendations >> 9. Develop & implement targeted vehicle operator and front-line staff training on ASD. 10. Establish statewide protocols for NGOs that support persons with ASD to collaborate more effectively with the transport community. 11. Conduct nationwide and global studies inquiry on Best Practices to ameliorate transportation barriers for persons with ASD. 12. Establish statewide mobility manager effort dedicated to serving adults with ASD. 13. Discuss possibilities for transportation service expansion. 14. Implement multi-pronged study findings outreach initiative. 15. Improve awareness among general population about ASD characteristics.
Research Outcomes >> What we are doing with our results: Working to improve transportation barriers Sharing results with adults on the spectrum and their families Collaborating with experts in the transportation and autism fields Educating elected officials and policy makers
Contact Information >> Andrea Lubin, M.S. Melanie McGackin Senior Researcher Family Training Director 848-932-2861 732-262-8020 annlubin@rutgers.edu melanie.mcgackin@fscnj.org Cecilia Feeley, Ph.D. Transportation Autism Project Manager 848-445-2975 cfeeley@rci.rutgers.edu