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Laura Seitz, Deseret News
Francisco Costa assists Judy Hills into a van after her dialysis appointment in West Valley on Wednesday, Dec. 12, 2018.

SALT LAKE CITY — A new survey suggests some older drivers and those with disabilities may keep driving longer than they should because they don't know what else to do.

A large majority of caregivers — 86 percent — say they are concerned about how well their loved one drives and believe the time is coming or even has passed when driving is not safe, according to the National Aging and Disability Transportation Center (NADTC).

More than 1 in 5 older adults don't drive at all, and 600,000 of them stop driving each year, the same survey shows. Those older adults, along with other adults with disabilities and their caregivers, know all too well how challenging lining up transportation can be. Getting from place to place is an ongoing struggle for those who cannot drive themselves and don't have willing drivers.

NADTC, a technical assistance center jointly managed by Easter Seals and the National Association of Area Agencies on Aging (colloquially called n4a), this month launched an effort to address the issue. In a news conference in Washington, D.C., last week, officials announced an "Every Ride Counts" campaign to spotlight local transportation options for those vulnerable adults who need help with transportation.

Laura Seitz, Deseret News
Francisco Costa situates Judy Hills in a van after her dialysis appointment in West Valley on Wednesday, Dec. 12, 2018.

They also released the results of a survey designed to capture the worries and experiences of older adults, people with disabilities and their caregivers when it comes to transportation challenges. They found a majority of those surveyed do not have a clear picture of their transportation options and dread of facing a situation in which they cannot get where they need to go.

The goal of the new effort is to boost access to transportation, defining "access" as knowing the options and being able not only to use them, but to afford them.

Officials say transportation challenges are difficult to measure because communities are so different in both need and resources. But the numbers are big. For instance, in Salt Lake County alone, more than 2,140 senior citizens used the Independent Aging program's ride service in 2017, primarily to get to chemotherapy, dialysis or doctor appointments. That's just one of Salt Lake's transportation options. And like many nationwide, it has trouble keeping up with growing demand: It doesn't have capacity to meet other destination needs, like getting to a grocery store or pharmacy or other routine places most people go without giving it much thought.

Families and friends are the first line of help, but getting to appointments often requires taking time off work or creates scheduling conflicts. Communities may have different options — from public transportation to private (often more expensive) transportation companies, cabs, volunteer-driver programs and more. But often, the amount of help available is less than the need and people end up staying home, according to Dwight Rasmussen, section manager of Salt Lake County's Independent Aging program.

"For the past couple of years, we've had to focus on medical trips," said Rasmussen, who notes that a more-frail clientele has also meant the program transports more people who use power wheelchairs, requiring bigger, lift-equipped vehicles, further straining the program.

He and program manager Preston Hutchings said that in the near past, older people who could no longer drive could arrange an occasional ride to a business appointment or other occasion. That's no longer the case. They've even limited visits for physical therapy. And rides must be scheduled well in advance.

" Without access to transportation, older adults are often left out and left alone. "
Sandy Markwood, CEO of the n4a national aging association group
Laura Seitz, Deseret News
Francisco Costa transports Judy Hills back to her home after her dialysis appointment in West Valley on Wednesday, Dec. 12, 2018.

The story is similar nationwide, where seniors and people with disabilities use outside help to reach their destinations — or they don't, because there's simply not enough transportation help available, according to Sandy Markwood, CEO of the n4a national aging association group.

Trapped without transport

Judy Hills, a 78-year-old West Valley, Utah, woman who has dialysis appointments three times a week, is fairly typical of a client who uses the Salt Lake County ride program. Her family is more than willing to help her, but can't take off time three times a week from work. She's grateful for an affordable way to get to medical appointments, while loved ones help with other needs.

The program's designed for those who can't afford more expensive options and charges a suggested $2 donation each way to medical appointments. Drivers are a mix of county employees and volunteers, said Rasmussen.

When it comes to transporting frail people who can't just hop in a car and go, what’s at stake is nothing less than quality of life. That's because transportation is vital against social isolation, “now recognized as a growing public health issue for older adults,” Markwood told reporters during the news conference. She said studies show the impact of isolation is as bad for health as smoking 15 cigarettes a day.

Older adults and people with disabilities may need assistance with simple errands like going to the pharmacy to pick up a prescription or visiting friends and family. Some who are elderly or have disabilities may need a ride to church or to work.

Laura Seitz, Deseret News
Bill Spiva maneuvers Judy Hills' wheelchair down a ramp after driving her to her dialysis appointment through the "Every Ride Counts" campaign in West Valley on Wednesday, Dec. 12, 2018.

“Without access to transportation, older adults are often left out and left alone,” Markwood noted.

The national campaign's focus is improving and making sure people know about accessibility, said Nancy Goguen, Easter Seals national board chairwoman. Some may not know options exist or even what words to put into a search engine to try to figure it out, she added. A lot of it is technical assistance. One of the efforts provides images and ads to which local programs can add their contact, for example.

The survey

The survey found most older adults drive themselves and ride with family and friends, but worry a lot about what they’ll do when they have to stop driving, said Carol Wright Kenderdine, co-director of the transportation center, funded by the U.S. Department of Transportation’s Federal Transit Administration.

Three populations were surveyed online or by phone: 509 seniors age 60 and older, one-third of whom have an activity-limiting physical disability or are hearing- or vision-impaired; 513 adults 18-59 who have at least one disability that limits activities or ability to see or hear; and 627 caregivers ages 18-84 who provide or arrange transportation for older or disabled loved ones.

Laura Seitz, Deseret News
Bill Spiva drives Judy Hills to her dialysis appointment through the "Every Ride Counts" campaign in West Valley on Wednesday, Dec. 12, 2018.

According to the report, about 70 percent of those with disabilities, older or not, have cut back their driving. The elderly cut back, too. Kenderdine said caregivers report spending between five and 10 hours a week arranging or providing transportation — and a whopping 86 percent say they worry about the person for whom they provide care if that individual still drives. Some report their loved one doesn’t know how compromised their driving has become.

The identified barriers to transportation include lack of a “go-to” single source to learn about alternative transportation options, as well as cost of such options — if they’re even available.

Younger adults with disabilities said they are pinning their hopes on improved options in the future, the report says. The need is especially acute in rural communities.

Those surveyed also said they would be most comfortable if they could get rides from family and friends or use a taxi or cab service. One may be time-prohibitive in terms of how much help family members and friends can give. The other may be cost-prohibitive. The report notes significant differences in comfort level for other options between older adults and those with disabilities. For example, older people don't want to use options designed for those with disabilities and vice versa.

Of the older adults, 8 in 10 do drive, while 58 percent ride with family and friends and 54 percent walk “sometimes or often." Just 15 percent use public transportation, while 10 percent use a cab service. No more than a third of the older adults said they know about transportation options in their community and 41 percent said they don’t have “good alternative transportation options” if they can’t drive.

Among the adults with a disability, 77 percent have a physical disability, 34 percent vision problems and 23 percent hearing problems. Nearly 6 in 10 have a caregiver, more than three-fourths get some help with transportation and 70 percent use medical equipment or mobility aids.

Fewer of them drive a vehicle themselves compared to those who are older. Three-fourths say they also ride with family and friends, 45 percent walk, 32 percent take public transportation and 30 percent use transportation services reserved for those with disabilities. Between 30 and 40 percent said they know their transportation options, but an even higher number say transportation would be very hard if they couldn’t drive themselves (80 percent).

Aaron Thorup, National Aging and Disability Transportation Center
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Of the caregivers surveyed, 62 percent provide help for an older adult, with about two-thirds caring for someone who is both older and disabled. Along with those they provide some care for, they cobble together transportation using a combination of rides with family and friends, special transportation services for people with disabilities, doing the driving themselves and using public transportation.

Hills says having affordable transportation makes a huge difference to her. "It's a blessing for me and I know it is for many of the other people I see at dialysis. I don't know what they'd all do if they didn't have it. Some don't have family to help."