Dialysis patients generally receive treatment several times per week, and missing a session can have real health consequences. Unfortunately, getting to treatment can be a challenge, and programs that try to address the problem often do not understand the unique needs of these patients. This can create as many problems as the program seeks to resolve. For many dialysis patients, rides that do not show up and waiting hours to go home are familiar experiences.
As Troyce Crucchiola, a dialysis patient in Portland, OR describes it, “our lives are so much about hurrying up to wait.”
Often the problem is a disconnect between those developing and running the program and the consumers who are using it.
“All of the people in transportation know that they move dialysis patients, they know that we go to and from treatment, the drivers know that they have people in their cars they bring home from dialysis that don't look good, that don't feel good, that just want to go home…” Crucchiola said in an interview with Portland Radio Project, “but as far as the process and what we go through and what is involved, they don't know that.”
What if those developing and running the programs did know? What if transportation programs, like the ones used by many dialysis patients, were designed by and with the consumers using the service?
The Administration for Community Living and the Federal Transit Administration are working with the Community Transportation Association of America, Easter Seals, the National Association of Area Agencies on Aging, and Westat to find out.
Through our joint Transportation Research & Demonstration Program, we are supporting community teams to make transportation more responsive to the needs of people with disabilities and older adults by including these consumers in the design and implementation of coordinated transportation systems.
Ride Connection, a community team in Portland, is using their grant to make getting to and from dialysis treatment a less stressful process. While many service providers include riders in focus groups and advisory councils, Ride Connection is going further and including consumers on the program team with a say in every step of the program’s development.
By giving dialysis patients the opportunity to actively shape the program from the beginning, Ride Connection was able to identify gaps and needs that were going unmet.
Among the changes that have come from consumer involvement are disability awareness and competency training for drivers and new scheduling procedures being piloted at a dialysis center to reduce transportation wait times. Patients also made a volunteer recruitment video highlighting the importance of reliable transportation.
While it is too early to know the long-term impact of giving riders a greater voice in the process, initial feedback from riders has been positive. In a survey of riders before the changes were made, 63% reported occasionally or frequently feeling stressed when thinking about transportation to and from dialysis. After changes were made based on the riders suggestions, just 4% of respondents reported this level of stress.
One of these riders is Crucchiola, who played an active role in developing the program and providing training for drivers.
“Involving patients affected by the problem directly and using their skills, observations, and input created a workable solution to a big problem in a short period of time,” Crucchiola said.
Ride Connection is just one of seven community teams who have received grants for the last two years to make their transportation systems more inclusive and responsive.
This month, CTAA is announcing a new round of demonstration grants funded by ACL to support additional communities in achieving this important goal. There will be a conference call to answer questions about the demonstration grants on Wednesday, Jan. 27 and applications are due March 18.
Learn about the other teams participating in this program and how your organization can apply for the next round of demonstration grants at www.transitplanning4all.org.