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.
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”.
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.
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.