His fiancee helped out for a while, but when that relationship ended last year, Cole, who's on Medicaid, could have been totally dependent on a local home health agency--and on a changing cast of home health aides whom he could not select or direct.
Cole, however, lives in Missouri. In June 2000, the Missouri legislature created the Personal Attendant Services program--a program that has dramatically changed the way people with disabilities receive care under the state Medicaid program.
Personal Attendant allows people such as Linden Cole to recruit and hire their own home health aides. So, with the help of a local center for independent living near his home, an ad for an aide was placed in the newspaper. The center culled the responses and sent the best of the batch over to Cole. He had his own set of priorities. "I was looking for someone in their 20s," he says. "It's easier to talk to someone that's my age."
Cole interviewed a young applicant who had just moved to the area from Denver. "We hit it off right off the bat," Cole says of the person he hired.
This kind of personal control over publicly funded health services still isn't widespread. But consumer-directed care is one of a growing range of options that states are looking at as a way to make life more comfortable for disabled Medicaid patients and, even more to the point, to prevent an unnecessary transfer to a nursing home.
"We're seeing a whole philosophy change in service delivery to people with disabilities," says Tim Azinger, vice chair of Missouri's statewide independent living council. "We're now looking at ways to keep people in the community."
The recent attention to such programs isn't entirely altruistic. In a 1999 U.S. Supreme Court case, Olmstead v. L.C., the justices ruled that Georgia had isolated people with disabilities in institutions without an appropriate medical rationale. It was, therefore, in violation of the Americans with Disabilities Act of 1990 and its implementing regulations, which require states to administer their programs "in the most integrated setting appropriate" and to maintain a waiting list for those programs that moves "at a reasonable pace."
While opinions vary as to how earthshaking the ruling will be, it clearly poses challenges for state Medicaid programs struggling tto provide home and community-based services for the disabled--be it the frail elderly, the developmentally disabled or people with mental illnesses or mental retardation.
Even before the Olmstead decision, many state Medicaid programs had been increasing their commitment to home and community-based services, especially through 1915(c) waivers, which allow a state to provide such home and community-based services as rehabilitation, training and transportation. Between 1988 and 2000, these waiver expenditures grew an average of 28 percent a year--a rate of growth second only to spending on prescription drugs. Although total spending increased, the outlays per person were much less costly than nursing home care. In 1999, the average home-care waiver slot cost about $15,331, whereas a nursing home averaged $40,000 a year.
The spending increase, however, has been far from enough to meet demand. Tens of thousands of Medicaid beneficiaries with disabilities are waiting for home and community-based services, and that's a problem in light of the Olmstead decision. Texas, for instance, has 29,000 people on its waiting list--a situation that Adelaide Horn, director of long-term-care coordination at the Texas Health and Human Services Commission, acknowledges leaves the state open to an "Olmstead" lawsuit. But according to Horn, it would cost "billions of dollars" to eliminate the waiting list altogether.
Lawyers for the disabled have already used Olmstead to force several states to expand their home-care programs for people with disabilities. As part of a settlement in a lawsuit brought against Louisiana by the New Orleans-based Advocacy Law Center, Louisiana agreed this summer to reduce waiting-list stays to no more than 90 days within four years and add a personal-care option to the state Medicaid plan. In answer to a lawsuit in its state, Hawaii state officials agreed to add 700 additional home and community-based waiver slots.
Clearly, Olmstead says that a state cannot justify a slow-moving waiting list for home and community services. On the other hand, the decision also says that states can take costs into consideration and do not have to change the fundamental nature of their programs--a comforting caveat in many state capitols.
Nonetheless, several states could be vulnerable to Olmstead suits. States that haven't shifted significant resources away from nursing homes (and other forms of institutional care) and into home and community-based care have more to worry about than states that have.
Most advocates for the disabled say they would prefer to win states over to more and better non-institutional care through persuasion, not lawsuits. The approach they and the disabled themselves favor is care that is consumer-directed. The Robert Wood Johnson Foundation, the U.S. Department of Health and Human Services and a handful of states have launched a program called Cash and Counseling, which began in 1998 and gives some 3,000 people in Arkansas, Florida and New Jersey virtually unlimited say over how they want to spend their personal- care dollars.
Under the usual Medicaid personal-care benefit, the only service a disabled person can get is a personal-care attendant. In the demonstration program, the benefit can be used for almost anything that would help a person remain in his or her home, be it assistive technologies or a home renovation. If, for instance, a microwave oven would allow a person to cook for himself, the benefit could be used to purchase a microwave. Cash and Counseling even allows beneficiaries to hire parents and relatives to serve as their caregivers.
Last March, Arkansas became the first state to fill its enrollment in the pilot program. "People are incredibly satisfied with this option," says Kevin Mahoney, the national project director for Cash and Counseling. Surveys indicate that more than 90 percent of participants would recommend the program to others. Most participants have been hiring family members and friends to provide their care. This has helped them avoid the worker shortages that plague home-health agencies nationwide. In addition, participants in the program were admitted to hospitals and nursing homes 18 percent less than people in a control group.
Some states have moved to the personalized approach on their own. Vermont passed a law in 1996 that gave Medicaid-eligible Vermonters with disabilities the freedom to determine how to spend their personal-care dollars. The ultimate goal was to shift long-term-care spending away from expensive nursing homes and toward less expensive community care, and the state has made progress toward the objective. By 1999, annual state spending on home and community-based care had increased from 11 percent before the act was passed to 19 percent. Moreover, before the 1996 law, nursing home expenditures were rising at a rate of 9.6 percent a year. In the four years that followed its passage, nursing home expenditures grew by less than 1 percent.
In some Vermont localities, the effects of the law have been even more dramatic. Addison, a rural county that is home to Middlebury College, has begun to serve more elderly and disabled people in home and community-based settings than in institutional settings.
One reason is the expansion of an adult day-care program, Elderly Services Inc. Once consumer-directed care was permitted under Medicaid, the program added an afternoon shift, which allowed many families to use day care rather than send their parents to a nursing home.
Day-care services in the community were bolstered by the addition of a transportation system--vans and organized carpools that pick up attendees at their homes and bring them home at the end of the day- care day. This recognition that community-based care requires a broad- based effort has been one of the positive fallouts from Olmstead. "In the past, we looked at long-term care as a health issue," says Wendy Fox-Grage, senior policy specialist with the National Conference of State Legislatures. "With Olmstead and the ADA, we're seeing a really unique group of people--housing, transportation, education, mental disabilities, the developmentally disabled community--working together on this."
It hasn't all been sweetness and lack of controversy. As self- directed home and community-based services grew in Addison County, nursing home use plummeted. One of two nursing homes closed. The remaining one renamed itself the Helen Porter Health Care and Rehabilitation Center and focused on providing more rehabilitation services.
This transformation of the long-term-care landscape has left nursing home operators shaken and arguing that consumer-directed care may not be safe for many of those who are using it. "I am concerned about the lack of quality monitoring for people in home situations," says Neil Gruber, Helen Porter's administrator.
Thus far, however, state officials say they've seen nothing to raise quality concerns. Nor do they apologize for targeting people at risk of going into nursing homes for home or community-based options. "When you have a service that is cheaper, that people prefer and that's more effective," says Bard Hill, the chief of home and community-based services at Vermont's Department of Aging and Disabilities, "you end up doing it."