To Drive or not to Drive

IMAGINE BEING DISABLED OR ELDERLY–and feeling trapped in your home. Last year, I surveyed 800 people in a California homecare program about their transportation patterns and challenges. They told story after story about being cut off from social networks, hospitals, and work, offering a devastating snapshot of immobility experienced across the country.

The survey respondents live in Contra Costa, a county across the bay from San Francisco with everything from small post-industrial cities to suburbs and agricultural areas. All the respondents receive care through California’s In-Home Supportive Services (IHSS) program, the largest homecare program in the country, with counterparts in other states. Overseen by the state government, administered by 58 counties, and funded in part by federal block grants, IHSS spends more than $3 billion a year on 360,000 clients with disabilities or frailty because of age. Clients generally have very low incomes. 

The IHSS clients I surveyed had disabilities ranging from sight and hearing loss to paralysis, dementia, and disease. Compared to the Contra Costa population overall (according to the 2000 Census figures), the clients were more likely to be older (median age of 67 years old versus 36), African-American (30 percent vs. 9 percent), female (71 percent vs. 51 percent), and living alone (40 percent vs. 24 percent).

The Americans with Disabilities Act of 1990 declared in its sweeping statement of purpose that the “Nation’s proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals.” However, while new doors may be opening, many people have no way of getting to them. Despite the critical help that IHSS offers, the clients consistently say that they need more transportation assistance in order to live as others do.

Many face the most fundamental transportation constraint of all: they have no way to leave home. As a 91-year-old, unmarried, African-American client summed up her situation, “Can’t afford taxi, bus, or BART [Bay Area Rapid Transit]. Can’t walk. Don’t have a car.” One-tenth of those surveyed go out “almost never,” and the vast majority leaves less than once every three days. Another client wrote, “I don’t go anywhere or do anything. I can’t afford to [and] I don’t get around very well.”

Clients were asked where, in the past month, they could not go because they lacked transportation. About 28 percent said they could not get to a family member’s or friend’s home because they had no way to get there; 26 percent to a grocery store; 23 percent to a doctor or hospital; 20 percent to a drugstore; 19 percent to a place of worship; and 15 percent to a social or community center. I also asked the clients who, if anyone, went with them to social events. Seventy respondents skipped the multiple-choice question entirely, writing comments in the margin that showed I had forgotten a brutally important answer choice: “I don’t go to social events,” they said. “I don’t go because of age and illness.” “Don’t remember.” “No social event.” “I don’t go to social events because there is no one to help me get there and back.” Several thought it had been at least two years. Another had not been in twenty years.

Stuck Without a Car

Unlike most commuters these days, very few–about 6 percent of–IHSS clients “always” drive themselves when they leave home, and only one-fourth even owns cars, compared with more than 90 percent of Contra Costa householders. Many clients no longer can drive themselves because of financial or physical constraints: “When I became disabled I lost my home and my car,” wrote one client.

Yet cars still matter to them: more than half of clients “always” leave home by getting a ride, and about the same number considers being driven the ideal way to get around. Supporting these findings, when asked in a 2003 study what characteristics in a caregiver were “extremely important” to them, 40 percent of California respondents said “having a car.” Clients prefer caregivers with cars both for rides and so that caregivers can respond quickly in times of need.

Why are rides in cars so desirable? To begin with, using public transit can be difficult. When asked what problems they have with buses and trains, a quarter of clients said they have to wait too long at stops: “Never know when the bus will arrive. Cannot read schedule and no place to sit and wait.” They also noted that vehicles are uncomfortable–the train is “too bumpy, causes extreme back pain”–and that bus and train fares cost too much, as do many other modes of transportation, such as taxis and paratransit vans. Others cannot climb stairs in stations, transfer, or “get my scooter on the bus.” All these problems are compounded by long and frequent trips: “I have a lot of appts. [appointments], hospital is 40 miles away.” Car rides are also faster, which is especially important during emergencies, such as for the client who gets a ride “if it’s at the middle of the night (ER).”

Moreover, driving can be the only feasible way to reach some destinations in Contra Costa, as is the case in many other American cities, towns, and rural areas. Clients described on their surveys how far they lived from eight key destinations, such as hospitals, stores, places of worship, and transit stops, and I found that transportation problems are significantly more likely to prevent those who live in more remote or otherwise less accessible neighborhoods from getting to doctors’ offices and hospitals, places of worship, grocery stores, and family or friends’ homes. Clients in those areas also are less likely to leave home as often and more likely to say that their community has no mass transit stops, that stops are too far from their homes, and that buses and trains do not go where the clients need to go. Even clients with transit close to home sometimes have trouble walking to stops (“it feels like a mile when I have arthritis in my knees,” one reported), but longer distances are especially hard for those who need places to rest, more time to cross streets, and smooth sidewalks. Although other studies have found that non-disabled drivers can experience increased mobility in lower density areas, such as suburbs, many of my findings suggest that, for those with physical impairments who do not drive, the reverse is true. 

Unfortunately, clients cannot rely on being driven by others. Almost half of all clients live alone, which makes it more difficult to get an impromptu lift to go buy food, for example. A recent Contra Costa focus group concluded that working family members, especially in the county’s suburban areas, do not have time to take seniors where they want to go. Seniors and the disabled do not want to burden others, so they pick and choose what favors they request. Researchers, including those mining the 2001 Nationwide Household Transportation Survey, have found that seniors and the disabled abandon social, religious, and recreational trips first when they have to rely on rides from others. Even getting a ride can cost money: one client described having to “mak[e] sure I have gas money for someone to take me to my doctor appointments, store, etc., because I only get SSI [Supplemental Security Income] to live on.”

No magic solution exists for these problems. Yet the findings highlight the need for continued action. In 2003, California’s Gov. Schwarzenegger unsuccessfully proposed cutting homecare services for 75,000 clients and lowering homecare workers’ pay to the minimum wage and has made similar proposals since then. Instead of moving backward, we should be planning ahead.

Allowing Homecare Workers to Provide Transportation

California, as well as other states, should increase the transportation funding available to homecare workers and should amend the IHSS rules that overly restrict the transportation help they can offer. Facilitating the direct provision of transportation to clients promises to be both efficient and effective: caregivers are already in the clients’ homes, they know where clients need to go, and many are personally invested: 55 percent of those I surveyed are related to their clients. Moreover, transportation expenses and commute time contribute to high IHSS job turnover. “The pay [$9.50 an hour] is not so good to be spending in transportation,” noted one homecare worker. Another felt that “the client situation is stacked against me when it takes an hour plus to simply get to my client’s home.”

IHSS homecare workers currently are paid to go with clients to medical facilities and on a limited number of errands, as long as the help fits into the narrow category of providing accompaniment, or personal assistance, such as aid getting in and out of cars. But caregivers are not supposed to give transportation help that falls instead in the “chauffeuring” category, as a Contra Costa pamphlet calls it. Moreover, they are not supposed to use their own cars to take clients places, which puts the vast majority of clients in a bind because they do not own cars. Caregivers also are not paid for the time they spend waiting for clients at appointments, which means that they sometimes have to leave their clients at destinations or wait without pay until they’re done. One worker complained about having to spend her limited personal money on “public transportation to assist/shadow my client to outings (school, family, grocery store, hospital, etc.).” Nevertheless, many IHSS homecare workers feel compelled to put aside their job descriptions and help in whatever way they can.

Therefore, homecare workers should be paid for the time they spend waiting for clients at necessary destinations; able to use their own cars to transport clients; reimbursed for gas and mileage; and, if necessary, given transit passes or loans to purchase cars. In Contra Costa, progress on these issues may continue to come from the homecare workers’ union, the Service Employees International Union (SEIU).

Letting the Disabled and Senior Citizens Get Around Themselves

Many clients also would love to get around independently if they could, but to do so they need better van services, transit passes, loans for cars, and money for vehicle maintenance. They also need public transportation designed around their physical limitations. Local and state agencies should continue putting such improvements among their top priorities.

Transportation is only part of the solution. City planners also can continue exploring incentives for developers to build affordable housing, including housing targeted to seniors and the disabled, near public transit and other key destinations. The reigning wisdom is that everyone wants the suburban dream of backyard space and fewer neighbors–and many people do. But when I asked IHSS clients, “Would you want to live in a neighborhood with more people if it meant being closer to shopping, medical, and social services?,” more than half said yes, including many who already live in the higher density parts of Contra Costa. Their physical and income constraints help explain their answers: “Doctors are too far to walk to. Grocery outlet closed down last year.” “It was not as bad until they stopped bus service except for weekday mornings and evenings.” “Hoping to relocate to a more mobile independent access [area]–shopping without any assistance and feel safe.”

Similarly crucial are national policies to fund mass transit for seniors and the disabled and to support caregivers programs. Such efforts would follow in the footsteps of large-scale legislative action such as the Americans with Disabilities Act of 1990 (ADA), the Older Americans Act (OAA) reauthorization in 1992, the Family and Medical Leave Act of 1993 (FMLA), and the New Freedom Program funded by the Safe, Accountable, Flexible, Efficient Transportation Equity Act: A Legacy for Users (SAFETEA-LU) of 2005.

While many of these measures will be expensive in the short-term, they also promise to save money. For example, by facilitating timely medical care, the measures could help prevent or treat clients’ health problems. They could decrease workplace disruptions for family members and the demand for expensive emergency transportation services in response to clients’ transportation crises. They also could increase clients’ contributions to their communities, the importance of which California recently recognized by allowing clients to receive IHSS assistance at their jobs.

The non-monetary benefits to the frail elderly and the physically disabled are clear, but many benefits exist as well for those who are fully mobile. Many would appreciate using more comfortable public transportation, having amenities such as smoother sidewalks, and being able to choose affordable housing close to necessary services. For some, the measures will decrease worries about friends and family members who otherwise would be more isolated. Even more selfishly, each of us could become disabled at any instant, and we all lose mobility over time—if we wait to address these problems, we may be the ones who wake up one day with no way to get to work.

Full text of this paper is available on the Social Science Research Network (SSRN) at http://ssrn.com/abstract=870866

Bailey, Linda. Aging Americans: Stranded Without Options. Washington, D.C.: Surface Transportation Policy Project, 2004.

Decker, Annie. “The Effects of Land Use on the Mobility of Elderly and Disabled and Their Homecare Workers, and the Effects of Care on Client Mobility: Findings from Contra Costa, California.” 18 Dec 2005.

Gray, Leslie, and Lynn Friss Feinberg. “Survey of Californians About In-Home Care Services.” San Francisco: Family Caregiver Alliance, National Center on Caregiving, 2003.

Nelson\Nygaard Consulting Associates. “Senior Barriers to Mobility.” Concord Senior and Youth Transportation Study. 2003. City of Concord, CA.