Imagine a world where you cannot drive. Where trains don’t travel and busses don’t run. How might that impact your ability to access quality healthcare?
That’s the world where many Utahns with disabilities and their families live right now. Utah’s Urban-Rural Specialized Transportation Association is working to ease the transportation gap, but it remains a health care issue, especially when the patient uses a wheelchair or scooter.
During our Diagnosed series, UPR’s JoLynne Lyon has traveled the state interviewing individuals with disabilities. She found that for many, transportation is a key healthcare component.
Carol Scholes is the mother of three children with severe disabilities. Two have passed away, and the surviving child, Valerie, is 31 years old. Over the years, the Scholes family has gone to a lot of appointments with medical specialists, far from their home in Independence, a tiny community in the Uintah Basin.
“It’s three hours out and three hours back and whatever time that we’re in the doctor’s office,” she said. “But because of her pressure sore issues, she can’t sit that long. So we have to check into a motel room and so I have to take everything with me. Everything. It’s very wearing.”
Whether it’s to a medical appointment or a family visit, there’s always some gear involved.
“My little van’s loaded. I feel like I pack for a week. I always need to take oxygen, just in case. We take diapers, well, briefs. We take pads, we take medicines. A lot of medicines. We take their oximeters, we take their feeding machines, for a while we’ve taken suction machines. I’ve been known when they’ve been on oxygen constantly, I’ve had to take a concentrator because Medicaid only pays for four tanks of oxygen a month.
“It’s all lifting. Valerie probably weighs 115 pounds. Of course, a wheelchair lift, an accessible van if I had one, it would make it a lot easier. But that takes money, and we don’t have any.”
If Carol lived in a city, she might bring Valerie on a bus that could transport wheelchairs. But her ranch house is a long way from a bus stop.
"There's a great need for both seniors and people with disabilities who can't access transportation," said Ryan Taylor, who serves as co-vice president on the Utah Urban-Rural Specialized Transportation Association, or URSTA. The statewide organization works to meet specialized transportation needs.
"Utah is unique in that we don't have a dedicated state funding stream for specialized transportation."
But he recently learned that starting in January 2019, funding from the Utah Division of Aging and Adult Services will allow people to arrange for drivers on their own. URSTA applied for the program's funding. It will run as a one-year pilot.
"Down in southeastern Utah, in Washington County near St. George, in Emery County, the Uintah Basin and up in Bear River area, we will all in 2019 be doing demonstration projects," Taylor said. "There's funding there for individuals to go out and to find their own driver, it could be a neighbor or a friend, will drive them to their medical visit, to the doctor, or to the pharmacy to get a prescription. And that person will get a really modest reimbursement for those trips that they make."
"I can see that other people who might not have that support group, if they did need to hire someone, that would be a wonderful thing," said Connie Pehrson, who lives in Lewiston, Utah. She found out how critical transportation can be when she started dialysis in Logan. Her family had a van that would carry her scooter. The problem was finding a driver.
"Somehow I had to get to dialysis and back," she said. "I wasn't able to drive, to get back on my scooter, and so we called around and found out if we were to rent something that would take my scooter it would be $200 a day, and that just wouldn't work for our budget. We looked into using the Cache transit and found out that it goes down to the Lewiston Library, which is about two miles from us. But getting me from my home to the Lewiston Library didn't work for me.
"Finally Carl just had to work with his boss and see if he could get off work to come from Smithfield where he works, out here to get me, take me into Logan, go back to work, and then when he got off work come and get me and bring me back home. He retired this summer, and now he's free to take me."
“Really I think the greatest needs are in rural Cache and rural Box Elder County,” said Zac Covington, a senior regional planner with the Bear River Association of Governments. He helps administer public transportation in northern Utah.
“Box Elder County in particular, anywhere Tremonton north really doesn’t have any services at all. The senior center in Tremonton does what they can, they’ve got some great staff and they’ve got some vehicles, but the funding just isn’t there to go beyond their scope as a senior center. So bringing people into the hospital or taking them back, they get a lot of requests for that, they just don’t have the funding and the staff to do that. So it’s a real issue.”
Zac and Ryan both say the voucher program should help ease the transportation struggles of some patients, though it won’t solve everything.
“For individuals who utilize a wheelchair or mobility device, that's a really difficult situation,” Ryan said. “And this really only addresses the folks who can get a ride from someone else. There are around the state specialized transportation with vehicles that have a wheelchair accessible lift or ramp, a lot of the senior centers have those vehicles, some of the nonprofits that work with those groups of individuals have those and provide some limited transportation, but that's definitely a gap. But eventually, we want to try and add more resources to that as well.”
Support for Diagnosed has been provided in part by our members and Intermountain Budge Clinic, a multi-specialty clinic offering care for every member of your family in one location. Details found here.