An Aging America Faces the Assisted Living Alternative. 

Author/s: Keren Brown Wilson
Issue: USA Today, March, 2000

"The challenge for society will be to provide affordable, safe, and high-quality facilities that respect the independence, dignity, and autonomy of the elderly."
AMERICA'S POPULATION is getting older and, along with it, there is a dramatic rise in the need for long-term care. Advances in medical science, greater access to health care, improved nutrition, and better living conditions have contributed to longer life expectancies. These improvements have made seniors, 85 and over, one of the fastest-growing sectors of society. This growth in the number of older people, coupled with lower fertility rates, has significantly increased the age of the population, contributing to the graying of America.

Another factor in the need for long-term care has been the increased survival rates for those born with serious disabilities and others who have been permanently disabled later in life. Many with diseases such as Alzheimer's, diabetes, or arthritis find themselves requiring assistance with activities associated with daily living, like bathing, dressing, preparing meals, and taking medications.

Dealing with the effects of chronic disease, disability, and aging present enormous challenges for society. The long-term care available for individuals in those circumstances has resulted in conflicts between some of Americans' most cherished values, in particular the desire to live independently and the need to be safe and secure. It has also raised questions about assuring quality of care and determining access to such services. Assisted living has developed in response to those issues as an alternative way for housing and caring for the frail elderly and disabled.

One of the greatest fears of the elderly is the loss of the ability to live independently. Their desire for autonomy can be thwarted by the reality of requiring regular assistance in their daily lives. This tension is often manifested as a conflict between the interested parties. Adult children and governmental regulators are typically concerned with the safety of the elderly. Their interests lie in protecting seniors from the possibility of a negative outcome such as a fall, even if that protection means a limitation on choices for the elderly. The latter, on the other hand, typically prefer more freedom, even if that means assuming more risk. To complicate matters, the elderly often suffer from chronic diseases that limit physical and cognitive functioning and raise questions in the minds of their children and professionals about seniors' ability to decide what is in their best interests.

My experience with my mother illustrates this conflict well and helps explain the growing popularity of assisted living as a form of long-term care. In 1969, she suffered the first of several severe strokes. By the time she died in 1979, she had spent the better part of a decade as a resident of many nursing homes. During most of this period, I was the person with primary responsibility for her well-being. It also happened that I was pursuing a career in gerontology, so I was well-armed with theory, data, and professional advice. Most of it was for naught. She wanted to eat what she had always eaten, smoke when she wanted, have her cat, and control her own medication. In short, she wanted to live a normal life as she defined it. I wanted someplace where they would take good care of her, even if it meant giving up most of the things that made life worth living for my mother.

Ultimately, this resulted in her moving herself from the nursing home I had selected to one that was more to her liking--without my knowing about it beforehand. The new place was a firetrap. She was on the second floor in a wheelchair with no elevator or ramp. The home smelled and showed evidence of rodents. Nevertheless, she liked it and wouldn't leave because it gave her more control over the things that were important to her.
Since that time, I have seen and heard many similar stories in other families. Today, though, we have many more options that strike a better balance between what my mother would have wanted and what would give me peace of mind.

As society has struggled to make nursing homes safer, the elderly increasingly have resisted living in them. The loss of independence--coupled with an institutional environment and having to share with strangers--has led to increasing demands for new types of community-based care. In this context, assisted living has evolved as a unique blend of housing, hospitality, and health-related services.

Assisted living residences use a residential model for the housing component, a hotel model for a hospitality approach to service, and a consumer model for health care. The environment in an assisted living residence mirrors the attributes of a home, with private space and personal furnishings. It maintains flexibility to provide individualized service and seeks to empower its residents to have more control over their care. At its core, the assisted living movement has been committed to the values of independence, choice, and dignity of the individual. In short, it has significantly expanded the emphasis on quality of life for those needing long-term care.

Defining quality of care
While far from perfect, the quality of clinical care in nursing homes has improved. However, the nursing home model of long-term care does not lend itself easily to supporting elements associated with quality of life. This is the thrust of the second issue facing long-term care--defining and measuring quality. Historically, most measures of quality in long-term care have focused on structure (e.g., staffing ratios) or process (e.g., scheduled fire drills). More recently, the emphasis has been placed on outcomes (e.g., preventing skin breakdown) and consumer satisfaction (often based on survey results). Yet, there is a more fundamental problem that has to do with our expectations. On the one hand, we talk of wanting quality care; on the other, we can't agree on how to define quality or measure it and are woefully unprepared for the cost of providing the kind of long-term care that would meet everyone's expectations.

It is vital to understand that, in caring for an elderly person, the long-term care provider must satisfy more than the senior's desires. Typically, the adult children and even a third-party payer must be satisfied as well. Each comes to the situation with a markedly different set of expectations. The elderly might think that quality has to do with being able to make their own health decisions. The adult children may think that it is the number of qualified staff to oversee and manage their mother's or father's health. A third-party payer, like Medicaid, might think that it is using the least amount of medical services, such as hospitalization, supplies, and specialists.

The importance of this issue is heightened by the growing success of assisted living. In a Congressional hearing, questions were raised about how much and what type of regulation might be appropriate to promote quality in assisted living. While increased regulation might help to establish and enforce higher standards, it could push assisted living toward a more traditional medical model of long-term care, inhibit innovation, and drive up costs. To avoid the mistakes made in dealing with quality in nursing homes, new approaches and partnerships must be forged among consumers, providers, advocates, and payers.

One such approach in the assisted living industry has been the ombudsman systems initiated by many states as advocacy programs for seniors. These are designed to have the provider, ombudsman, and family work together to resolve any problems related to a particular resident. The programs worked as intended in the beginning by keeping all the stakeholders at the table to answer the tough questions: What does this resident need? How do we get there? Who is going to pay for it? As ombudsmen took on more regulatory responsibilities, however, their role changed. In many states, they have become more like state surveyors and less like advocates, arbitrators, and/or partners.

The challenge lies in achieving a balance by setting priorities among competing expectations. One of these priorities is the affordability of care. To date, the growth in assisted living has been primarily at the upper end of the market. While largely the result of the elderly and their families paying for such services out of their own pockets, it is also the result of not having any boundaries on expectations. Unlike with other areas of consumption, society has not developed alternative models of long-term care with different price points. Consequently, access to assisted living has been shut to those with limited financial resources.

How could we begin to develop a more affordable model of assisted living? As a start, we might think about designing lower-cost buildings. If we attempted such a design, though, we would find mandated codes and other regulatory requirements that would force us into the more-expensive model. We would also want to consider controlling service costs, but these are essentially a function of labor expense. Efforts to improve working conditions (wages, benefits), improve the skill level (credentialing, training, job specialization), or define how services are to be provided (multi-disciplinary teams, staffing levels) increase costs. Over-utilization of services and more dependency are side effects of efforts to deal with competing priorities of the resident, an involved family, and a regulatory body. It often happens that the professionals suggest and family members seek more services than the elderly resident would have purchased on his or her own, thus driving up the cost of service.

The lack of affordability of long-term care threatens the growth of assisted living as a viable form of long-term care for older and disabled adults. Just as the industry responded more than three years ago to address issues related to defining and measuring quality, the Assisted Living Federation of America has been working for the past year to develop proposals designed to increase access to those with fewer economic resources. These proposals may include voucher systems, various financing mechanisms, state and local demonstration projects, and a review of the Medicaid waiver programs currently in effect in several states.

At the same time, states are actively exploring ways to increase funding for alternative models of long-term care, including assisted living. When looked at in a larger context, the success of assisted living represents a major shift in thinking about long-term care. Its philosophy is represented by the values of independence, dignity, choice, and a home-like environment and focuses on the quality of life for those needing long-term care. In this way, assisted living becomes part of the larger movement of consumer empowerment for all users of health care.

There has been a lot of talk about the aging of the baby boomers. In the next few years, though, there will be even more talk about the aging of the parents of the baby boomers as they join the ranks of the frail elderly. The burden on children and spouses will be too great without the support of assisted living facilities. The challenge for society will be to provide affordable, safe, and high-quality facilities that respect the independence, dignity, and autonomy of the elderly.

COPYRIGHT 2000 Society for the Advancement of Education
COPYRIGHT 2000 Gale Group