For those who are unable to drive to and from their home, whether due to a disability or other reason, the transportation options available are often limited. For those who rely on personal care attendants (PCAs), it can be even more challenging.
In the spring of 2017, Ted Stamp, an Independent Living Advocate at the Southwestern Center for Independent Living (SWCIL) in Marshall, heard from a neighbor that her caregiving agency would no longer allow PCAs to drive her where she needed to go. She was told PCAs could ride with her on public transit, and could drive her vehicle to run errands, but she could not be in the car while her caregiver was driving. That seemed odd to Stamp, who was also using PCAs to get where he needed to go.
“I never would have thought a PCA could not drive a client to appointments,” said Stamp.
Unsure if this was an issue with the provider or something broader, Stamp began to research. It became clear that the problem was with the wording of the state statute for the PCA program. As it turned out, driving clients was never actually an allowable service that PCAs could provide.
“Not everyone reads the language in these statutes,” Stamp joked.
In fact, the language in the statute explicitly disallowed PCAs from serving as a driver and a caregiver at the same time. It was obvious to Stamp that the language needed to be changed. “It seemed to be a commonsense update to make.”
Stamp began to connect with others who were involved in the PCA and transportation space, which is how Shelly Pflaum, Southwest Regional Transportation Coordinating Council mobility manager with United Community Action Partnership, became involved. “Building transportation options is my role, making more options than currently available, meeting the needs of those who have difficulties with transportation. The PCA issue created a transportation barrier. That’s how I got involved,” she said.
As spring turned to summer, Stamp and Pflaum were able to convene a group together—the PCA Driving Stakeholders Group—which consisted of those working in caregiving agencies, transportation providers, the Department of Human Services (DHS), the Minesota Disability Law Center, Centers for Independent Living, city and county officials, and others who cared about the issue. One of their local legislators at the time, State House Representative Rod Hamilton, offered to lead the charge in the Legislature.
“He was one of the best supporters,” Stamp said.
Hamilton told the group that if they formulated a change to the language, he and his staff would prepare it and support it in the legislature. Following that directive, the group met regularly through the rest of 2017 and into 2018.
The effort began by looking at other state PCA statutes. Each state is slightly different, especially in how they run their PCA programs.
“Minnesota has a great system that pays and supports a lot,” Stamp pointed out. “Direct Service Providers (DSP) and PCAs both get money from the State, but each have different rules and regulations.”
Once the language for an amendment came together, the group began the push to get it added to the statute. The first opportunity came during the 2018 session, though there was not enough time before the session ended to get it introduced.
In the meantime, additional organizations joined the coalition in support of this legislation as well. “I had joined the Minnesota Council on Disability (MCD) by this time, and was on a subcommittee regarding access,” said Stamp. “MCD supported it and added it to their legislative agenda.”
Along with MCD, the group was able to gain support from other agencies such as MN Arc, the Minnesota Consortium for Citizens with Disabilities, the Minnesota First Provider Alliance and many other individual advocates from all over the state.
After the issue was added to MCD’s legislative agenda in 2020, MCD was able to take the lead, carrying the bill forward. “Handing the baton was a crucial decision, since it became a part of their regular legislative agenda for the next few years,” added Stamp. He and others testified in hearings to the Minnesota House, and bipartisan support began to grow.
As awareness was brought to the issue, questions started to arise. Would there be an additional cost to the state if PCAs could add driving to their allowable services? Who would hold the liability? Was it the PCA agencies, employees or clients? Or a combination? Would amending the statute result in clients needing more PCA hours? In short, what was the real cost of allowing PCAs to drive? This was the key question, and one that eventually worked in favor of changing the statute.
“Rural areas can be a challenge for appointments because they are not served by as many transit options as metro areas,” said Stamp.
“Rural systems were already limited in capacity and options,” Pflaum added. “And now even more since the COVID-19 pandemic.”
In rural areas, it may be necessary to travel long distances to get to a doctor. Late night and evening trips are limited, and dial-a-ride services aren’t always an option. Ambulances are an option, but they are extremely costly. “Our argument was that PCAs would be a much cheaper option,” Stamp said.
“There are long-term consequences if people can’t access medical care, or if they can’t participate in events with others, whether that’s church, shopping, work, or whatever they need,” said Pflaum. “We aimed to reduce the strain on current transit system and get more people where they need to go with this minor change in legislation.”
The bill, Reinstating Community Access for the PCA Program, as it came to be called, continued to move closer to the finish line. It was set to be included in the long-awaited Community First Services and Support Act in2021, but it did not get passed. 2022 saw the bill included in the omnibus package, though it was removed at the last minute.
The stars finally aligned in 2023, though. The bill was passed with bipartisan support and signed by the Governor. The proposed changes received federal approval on November 7th, 2023, with implementation at the State level occurring within 90 days. The changes were effective February 7, 2024.
“It seems the language has not changed much from our initial meetings,” joked Pflaum. “It’s interesting how the process worked out.”
Advocates statewide are waiting to see how implementation of this legislation will unfold. Stamp and Pflaum both noted that clients will need to sit down and review their specific care plans with their providers. It will still be up to individual PCA agencies to determine who they want to allow to be drivers for their clients.
When asked if they would’ve done anything differently, the consensus from Stamp and Pflaum was “no.” Pflaum credited Stamp on his work at the beginning of this journey as part of why the legislation was a success. “He did great work, and working with those bigger agencies was key to getting this over the finish line.”
Stamp was not one to brag or take all the credit in our interview, but he was proud of the work their group and others did to make this happen. “What we could control was handled well and worked great. Networking and the connections we had greatly helped us move forward.”
Both Pflaum and Stamp agreed that accomplishing this change was a group effort, and now they look toward solving new problems. For those looking to increase transportation access, or just improvements to their own communities, Pflaum had important advice.
“Be patient. Seek to understand what you are trying to change and be persistent. But most importantly, network. Get others involved. You can’t do it alone.”