Transp ansport rtation n & Mobility y Issues: es: A Repor - - PowerPoint PPT Presentation

Transp ansport rtation n & Mobility y Issues: es:

A Repor

• rt o

t on the Needs and B Barrie rriers of

• f

Adults o s on t the A Autism Spectr ctrum

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

• 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

Today’s Focus: Presentation Outline >>

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

• ptions are available & how to travel

to get anywhere We train for employment, but

• verlook how to access an actual job

We train for independence – but

• verlook 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

Walking Driving Local Bus Interstate Bus Rail Light Rail Subway Ride Shares (UBER/LYFT) Paratransit ADA Complementary Paratransit Taxis Shuttles Bicycling Ferry/Boats Airplanes

Transportation Options in the Philadelphia Area >>

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 Ski kills

Source – YouTube https://www.youtube.com/watch?v=b_hqrK5C8VA

Driving Skills >>

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

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

• r TBI

Many CDRS are Occupational Therapists who specialize in driving Can assist with Vehicle Modifications

Working with a CDRS >>

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

Source – YouTube https://www.youtube.com/watch?v=MPb5WPvpsU8

Public Transit >>

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 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.

Travel Instruction / Travel Training >>

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

• r 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

http://cait.rutgers.edu/autism-survey

Rutgers Research Report >>

• Literature & Data Review
• Key Informant Interviews
• Statewide Survey
• Focus Groups
• Executive Summary &

Technical Report

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

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: How Adults with ASD Regularly Travel >>

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: Impact of Autism >>

Always Available 30% Sometimes Available 28% Not Available 23% Don't Know 19%

Transportation to work/employment

Always Available 45% Sometimes Available 26% Not Available 19% Don't Know 10%

Transportation to education, vocational or job training

Survey Results: Transportation Availability >>

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 >>

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%

• 61% of adults with ASD never used any form of public transit
• 32% of those using public transit received travel training

Survey Results: Walking >>

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%

• 54% of adults with ASD did NOT know how

to cross street safely

• 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

• ncoming 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

Survey Results: Key Findings Summary >>

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

“Driving is a matter

• f financial survival

so I can get to work.” “I spend most

• f my budget on

transportation.” “I need information on how to use public transit services instead of information on the food pyramid.”

Transportation Barriers: Adults with Autism In Their Own Words >>

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 &

• ther 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

“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.”

Transportation Barriers: Families in their own Words >>

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 Findings >>

• 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
• ptions 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 Study Recommendations >>

Research Outcomes >> 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

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

Contact Information >>