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Be Indypendent: Mobility Coordination for Individuals with Intellectual and Developmental Disabilities

Transportation is essential for people of all ages and backgrounds to live a fulfilling and satisfying life.

Photo of Lisa Wells
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DSI requests funding in the amount of $100,000 in support of its Be Indypendent Mobility Coordination program. The funds will be used to support a new Mobility Coordination staff position at Down Syndrome Indiana.  This position will be responsible for training drivers,  scheduling rides, coordinating transportation and mobility resources for clients, and being involved in community outreach and education surrounding transportation of individuals with an intellectual and developmental disability, as well as, continuously monitoring funding for the program.

Background

Transportation is essential for all people of all ages and backgrounds to live a fulfilling and satisfying life.  It plays a vital role in many aspects of daily life including access to employment, education, health care and, social and recreational activities. This proposal will help to address the need for increased transportation options for individuals with Down syndrome (Ds) by providing on demand transportation and mobility coordination.

According to the U.S. Census Bureau (2011), approximately 36.3 million Americans experience one or more disabilities, which is the equivalent to one out of every eight Americans. 30% of individuals with a disability have difficulty accessing transportation (US General Accounting office, 2003). Barriers to public transportation quickly affect the ability of people with a disability to fully experience the social, economic, and political environments of their community (Christensen, 2014). It is estimated that 560,000 people do not even leave home as a result of transportation difficulties (U.S. Department of Transportation & Bureau of Transportation Statistics, 2003). Adequate, accessible public transportation is essential to fully address social and economic disparities that exist among individuals with a disability (National Council on Disability (NCD), 2005).  Being able to travel independently, is a critical element to maintaining quality of life and participation in the community. (Sally Lindsay & De-Lawrence Lamptey, 2018).

In an October 2018 report entitled, Comprehensive State Plan on Community-Based Services for Persons with Intellectual and Developmental Disabilities (IDD): A Report to the Indiana General Assembly, the Task Force for Assessment of Services and Supports for People with Intellectual and Developmental Disabilities made the following recommendation regarding transportation: 

The Task Force recommends, “Developing transportation strategies promoting independence and employment through collaborative efforts of key stakeholders and public-private partnerships across rural and urban areas. This may include addressing multijurisdictional issues; encouraging more funding for public transportation models; working with state and local transportation boards to ensure representation of individuals with disabilities; improving existing infrastructure to be fully accessible; facilitating the use of private ride sharing systems; and encouraging the development of innovative options such as driverless vehicles.” (Nord & Grossi, 2018 p. 8).

Residents of all counties, including Marion County, need regional transportation.  In fact, The Coordinated Regional Transportation Plan for the Indianapolis Metropolitan area states, “Providers need to expand service to meet the needs of employees with nontraditional work hours. Saturday service is required from Federal, state, and local resources to address the needs of work shifts”.

The Solution

It is estimated that about 3,000 individuals with Down syndrome reside in the Indy Metro area. In its research and planning, Down Syndrome Indiana has found a lack of transportation options to be the largest barrier to employment and positive health outcomes for individuals with Down syndrome.  Most adults with Down syndrome are relying primarily on their parents or adult siblings for all of their transportation needs. We are now seeing the first generation of individuals with Down syndrome who are living longer than their parents. This poses a challenge for primary caregivers with conditions of aging. Some individuals with Down syndrome do utilize Open Door or IndyGo bus service. Where resources do not currently exist, the Be Indypendent Mobility Coordination program can step in to fill the gaps in transportation. The drivers will be considered independent contractors for Down Syndrome Indiana. They will own their own vehicles and carry insurance. Payment will take place through Venmo or similar app.  

Inspiration

Down Syndrome Indiana’s transportation program is based on Fare-cle, which was founded in Cleveland, Ohio in 2017 by Debbie Picker. As an Intervention Specialist and mother of two children with Down syndrome, Debbie understands the time commitment needed to ensure individuals with challenges remain engaged and active at every stage of life. For years, Debbie had been listening to parents wish for a “Sp-Uber” (Special Uber™) to ease the burden of driving to and from the activities their children attend. She developed Fare-cle in response and has allowed Down Syndrome Indiana to consult with her to develop a similar program in Indianapolis, Indiana. 

Partnerships and Expansion

Down Syndrome Indiana has decided to start with what we know best, which is individuals with Down syndrome, and then expand into the larger world of additional Intellectual and Developmental Disabilities, a broader geographic reach and, also to individuals with Alzheimer’s disease.

Down Syndrome Indiana will reach out to the following organizations: The Arc of Indiana, the Bureau of Developmental Disabilities Services (BDDS), the Sunshine Society, the Joseph Maley Foundation, the Center for Youth and Adults with Conditions of Childhood (CYACC), the Indiana Statewide Independent Living Council (INSILC), CICOA, the Central Indiana Regional Transportation Authority (CIRTA), The Alzheimer’s Association and GiGi’s Playhouse Indianapolis. Hopefully, we will also learn about and meet new partners along the way.

Describe who will use your solution (1,000 characters)

The life expectancy for people with Down syndrome has increased dramatically - from 9 years old in 1959, to 25 years old in 1983 to 60 years old today. We are now witnessing the first generation of individuals with Down syndrome who are outliving their parents. This means an increased need for supports, like transportation options, that will allow individuals with Down syndrome to live healthy, independent lives. Research indicates that social support is exceptionally important to maintaining good physical and psychological health. Yet, there are very few individuals with Down syndrome who have the ability to obtain a driver’s license. Therefore, an individual with Down syndrome will rely on someone else for transportation for their entire life. Adequate, accessible transportation is essential to fully address social and economic disparities that exist among individuals with a disability. The ability to access one’s community is an incredibly important component of one’s health.

Describe your solution's stage of development

  • Initial Design - you are still exploring the idea and have not tested it with users

Insights from previous testing (500 characters)

This program is based on the already successful, Fare-Cle, which was founded in Cleveland, Ohio by Debbie Picker. Debbie has agreed to consult with Down Syndrome Indiana, in order to, develop a similar program in Indianapolis. Down Syndrome Indiana is looking to partner with other like-minded organizations in the future after the pilot is successfully completed. Down Syndrome Indiana has learned to begin small and to learn from experts in the field who are already doing what we want to do.

Tell us about your team or organization (500 characters)

Down Syndrome Indiana has significant, ongoing involvement with the project’s target population. Down Syndrome Indiana is proud of its dedicated and highly qualified team. Our team consists of our Board of Directors (https://dsindiana.org/board-of-directors/), Staff members (https://dsindiana.org/staff/), and the 214 volunteers who donate 3,691 hours of their time annually.

Size of your team or organization

  • 2-10

Funding Request

  • $100,000

Rough Budget (500 characters)

DSI requests funding in the amount of $100,000 in support of its Mobility Coordination program. The funds will be used to support a new Mobility Coordination staff position at Down Syndrome Indiana over a two-year period. This position will be responsible for training drivers, scheduling rides, being involved in community outreach surrounding transportation of individuals with an intellectual and developmental disability, as well as, continuously monitoring funding for the program.

Describe how you would pilot your idea (1000 characters)

Down Syndrome Indiana has decided to start with what we know best, which is individuals with Down syndrome, and then expand into the larger world of additional Intellectual and Developmental Disabilities, a broader geographic reach and also to individuals with conditions of aging. Down Syndrome Indiana’s Be Indypendent Mobility Coordination program is based on the already successful, Fare-Cle, which was founded in Cleveland, Ohio by Debbie Picker. Debbie has agreed to consult with Down Syndrome Indiana, in order to, develop a similar program in Indianapolis. She developed Fare-Cle in response and as mentioned above is now allowing Down Syndrome Indiana to consult with her to develop a similar program in Indianapolis so DSI does not have to recreate the wheel.

Describe how you would measure the success of your pilot (1000 characters)

Down Syndrome Indiana will hire and retain a dedicated Mobility Coordinator to oversee the program as well as, to coordinate mobility resources for individuals with Down syndrome. Down Syndrome Indiana will pilot a soft launch at the beginning of month 4. The pilot will begin with two or three trusted drivers providing rides. Success is measured by the following performance indicators: # of riders enrolled in program annually # of rides provided in a year # of riders trained # of drivers recruited and trained # of rides to employment # of rides to community-based activities such as exercise classes # of rides to doctor’s appointments

Sustainability Plan (500 characters)

This program can be sustained after the pilot period ends by doing the following: 1.) The pursuit of an Indiana Down syndrome Awareness license plate to raise revenues to support mobility coordination and safety; 2.) Implementation of a small annual membership fee; 3.) Down Syndrome Indiana will continue to pursue grants as needed; 4.) The Buddy Walk®, our largest fundraising event will also help to support the program as needed.

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Photo of MaCie' Moore
Team

Hey Lisa Wells , this is MaCie' one of the online facilitators here! Thank you for participating in the challenge! I really like the concept of your proposal and how you anticipate expanding beyond just individuals with down syndrome in the long term. One thing i was suggest is to look into creating partnerships with existing transportation providers, rather that's educational or a referral service. Also how would the pilot drivers be paid? Do you already own a bus?Are the drivers and buses things you already have? If not this may be something to consider working into your budget. I also would expand on the percent of individuals in Indianapolis with down syndrome, and how they commute. Also, since you anticipate serving other individuals with intellectual disabilities in the future i would further weave that into this proposal with statistics as well. Just to make it seem a little more inclusive and fully demonstrate the population you ideally would want to serve! I love this proposal.

Photo of Lisa Wells
Team

Hi MaCie’ Moore! Thank you so much for your feedback. I really appreciate it. I definitely agree that we must look into creating partnerships with existing transportation providers. This way we can help connect the individuals we serve to existing resources. Where resources do not currently exist, the Be Indypendent Mobility Coordination program can step in to fill the gaps in transportation. The drivers will be considered independent contractors for Down Syndrome Indiana. They will own their own vehicles and carry insurance. Payment will take place through Venmo or similar app. Most adults with Down syndrome are relying primarily on their parents or adult siblings for all of their transportation needs. A challenge is that we are seeing the first generation of individuals with Down syndrome who are living longer than their parents. This poses a challenge for aging parents. Some individuals do utilize Open Door or IndyGo bus service. It is estimated that there about 3,000 individuals with Down syndrome in the Indy Metro area. Thank you again for the feedback. I will work on making updates.

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