Improving care in nursing homes using community advocacy

Sot. Ser. I,&. Vol. 23. So. 12. pp. 1297-1303. 1986 Printed in Grcar Brirain. All rights resened

017-9536 86 53.00 - 0.00 Cop!rght t 1986 Pergamon Joum;lls Ltd

IMPROVING CARE IN NURSING HOMES USING COMMUNITY ADVOCACY

COSSTANCE WILLIAMS

Department of Medicine, Rte I. University of California Irvine IMedical Center, 101 The City Drive. Orange, CA 92668, U.S.A.

.Gstract-Community organizations have often focused their campaigns for social change on the health care system. While the techniques of Saul Alinsky and to a lesser extent Paula Friere have provided the theoretical backbone for most community organizing efforts, these campaigns frequently are characterized by a rather eclectic synthesis of different methodologies. The nursing home industry has been one of the most severely publicly criticized components of the American health care system, and during the last decade consumer groups have sought to achieve fundamental improvements in the quality of life and care available to nursing home residents. However, the standard Alinsky and Friere techniques have limitations in organizing efforts directed toward nursing home reform.

One case study is presented which describes a relatively successful community organizing project for better care in a San Francisco Bay Area nursing home. The organizing method used in this project was one of community advocacy. This method is described in detail, and the limitations and potentials of community advocacy are analyzed.

Ke! words-nursing home care, quality, reform, advocacy

The problems facing the 5% of U.S. citizens over the age of 65 who live in nursing homes have been well documented to include patient abuse and neglect, inadequate medical and nursing staff, overuse of psychoactive medication, inadequate nutrition, substandard sanitation, unsafe living environments, and fraud [IA]. A number of different approaches have been developed in attempts to solve these problems. Federal and state agencies inspect and license facilities. Task forces of medical and nursing professionals perform peer review and develop policy about nursing homes. Nursing home owners and administrators have formed associations which lobby, focus on public relations, and purport to perform peer review. There is a federally funded ombudsman program which has been mandated to mediate-without any formal powers--complaints about nursing homes. A number of consumer groups lobby, provide complaint resolution assistance, and/or assist patients, depending upon a particular group’s orientation [4, p. 2001.

One such consumer group (referred to throughout as group C), operated out of the San Fancisco Bay Area from 1977 to 1983. Group C developed a program which included hotlines for receiving and resolving complaints about nursing home conditions, a research unit for investigating financial and policy aspects of long-term care, a citizens’ network to lobby for legislation related to nursing home issues, legal backup for litigating major cases, and a door-to-door canvass which recruited more than 20,000 volunteers and dues paying members.

This paper describes a method of community organizing. which the author has termed community advocacy. that was used by group C to improve care at a San Francisco Bay Area skilled nursing facility (referred to throughout as SNF).

Because there is very little written in the literature

which describes community organizing benefitting the institutionalized elderly and disabled, the community advocacy methodology is described in detail. The factors which were significant in choosing a community advocacy approach are analyzed. and followed by a discussion of implications for future applications.

OuerDiew of community organizing

Before detailing the methods utilized in the case described below, some of the general theories of community organizing will be discussed.

The community organizations developed by Saul Alinsky were based upon the concept of mass organization of the disenfranchized to empower themselves. He created ‘peoples’ organizations’ which represented the coming together of parties with a defined set of self interests to participate in multi- issue campaigns. Alinsky described the major func- tions of peoples’ organizations as follows:

“One is the accepted understanding that organization will generate power.. for the attainment of a pro-mm. The second is the realization that only through organization can a people’s program be developed. and the function of the organization becomes to use power in order to fulfill the program” [S, p. 541.

Paulo Freire’s style of community organization relied upon a method of education which focused on the development of ‘critical consciousness’ among the oppressed to encourage them to examine their world critically and to take action to transform it [6]. Friere’s model of education calls for facilitators to search for ‘generative themes’ which represent the hopes and concerns of the oppressed. These serve to tie micro level problems to macro level solutions requiring political action. The Friere and Alinsky methods both advocate organizing the oppressed to

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take collective action to empower themselves. How- ever. the role of a Friere facilitator. as one who primarily asks questions and challenges the group to transform a limiting situation. distinguishes his method from the more asymetrical paternalistic leadership role advanced by Alinsky [7, p. 3121.

A practical application of Friere’s theories with the frail elderly is demonstrated in the work of the Tenderloin Senior Outreach Project. ,Minkler has described community organizing efforts directed at improving the health and facilitating individual and community empowerment of poor elderly residents of single room occupancy hotels in an urban ghetto. These efforts evolved from a community development project to a more macro-focused social action organizing endeavor utilizing intentional social support networks and a modified Ftiere problem posing method to develop social action plans [8].

Community advocacy is a social change strategy which will be detailed below. An advocate is one who acts on behalf of another who lacks certain skills or resources. An example would be that of a legal advocate representing a defendant in court. Community advocacy is a strategy which brings together a group similar to an Alinsky ‘peoples’ organization,’ but which uses its power as a group to advocate for the rights of others. In this case, a nursing home commit- tee formed to advocate for nursing home residents who were too physically. mentally or socially disabled to act for themselves. This method represents a great departure from community organizing models of Friere and Alinksy which stress the absolute importance of limiting the role of an organizer (or facilitator) to assisting his clients to empower themselves.

This paper will analyze the similarities and differences between community advocacy strategies. The rationale for using this model and its potentials and limitations will be discussed.

Selection of project for study

The case study described below was selected to demonstrate the model of community advocacy. The project was initiated in 1979 and was one of group C’s first. The organization later used this strategy of community advocacy successfully in other nursing home projects. The author was the principal organizer for this project.

The data are thus based primarily upon personal recollection and supplemented by documents including official agency correspondence, newspaper arti- cles, and California Department of Health Services records.

CASE STUDY DESCRIF’TIO3

The nursing home, SNF, discussed in this case study, was a piivate. for-profit. 90-bed facility owned by three businessmen. It was not part of a chain of nursing homes. The great majority of SNF patients were poor, Medicaid and Medicare eligible. and older than 70 years of age. Approximately 40% were black and a significant portion spoke only Chinese. Less than 30% received regular visits from family or friends. The facility was hcensed and inspected by the California Department of Health Services.

Group C formed an SNF community councrl. initially composed of approx. 50 members. Some were long time group C supporters and came from the organization’s contac;s with churches. senior centers. and senior organizations. such as the Gray Panthers. Others were recruited b> the group C door-to-door canvass which raised funds and identified potential volunteers and activists. .-I feu people were recruited by learletting the neighborhood surrounding SNF and encouraging people to ‘support their neighbors’ who lived in the local nursing home. Various former SNF nursing personnel were also active.

As the project developed. outreach was intensified to broaden the council’s basis of support. .At the height of the campaign, in addition to the original members, council members included representativ,es from other community organizations and senior groups, physicians and nurses (vvho were not participating as representatives of professional associations, but as individuals involved out of a sense of professional concern). representatives from diffirent churches, and a member of the County Board of Supervisors.

One g,roup which was consistently the most active and rehable about attending meetings and participating in actions was composed of several older. black Oakland residents who lived in neighboring subsidized senior housing projects. Tney participated out of a belief in the importance of the issue of nursing home reform and as part of their Christian ethic. Several confided that another factor in their decision to participate was that they enjoyed the opportunity to socialize. They apprstated the rides provided to the meetings since many were isolated elderly poor without transportation and therefore unable to travel far from home. Thsir involvement satisfied their desire to help nursing home residents while also meeting their ovvn needs to be more socially integrated.

It is important to note that neither patients nor their relatives participated on the council. The rea- sons for their lack of participation and the impact which this had on the group will be analyzed belovv.

The situation at SNF came to attention in .lfay. 1979, when two nurses’ aides called group C’s complaint hotline to report a litany of health code violations. The nurses’ aides repor:sd that they had witnessed the supervising RS beat a patient confined to a wheelchair. Additionally they alleged severe understaffing, lack of linens and supplIes. medication errors, improper and inadequate nutrition and poor housekeeping practices.

During preliminary investigations of these alle- gations, group C staff discovered that one supervising RN accused of beating the patient aas not licensed in the State of California.

After documenting the problems at SNF as thor- oughly as possible, group C filed with the De- partment of Health Services (DOHS) a complaint alleging 37 separate violations of the California Health and Safety Code. Simultaneous rvith filing the complaint, group C held a press conference in front of SNF where the aides related their experiences and community members picketed to dramatize their concern and demand better conditions for the SSF

Improving care in nursing homes lsJ9

residents. Group C felt the press conference was necessary to bring public pressure on the DOHS to perform a thorough inspection, since previously the DOHS had failed to respond adequately to similar complaints filed by the community group regarding other nursing homes.

Following the press conference, group C received a hotline complaint from a physician at the County Hospital regarding three patients who had been admitted from SNF. The patients were very dehy- drated and hypematremic (one had a serum sodium concentration of 202 mequiv./l-one of the highest ever reported in an adult [9]). The physician believed their deaths could be attributed to an insufficient fluid intake while at SNF. Another press conference was held, at which the physician presented his case findings and group C pressed the DOHS to step up its investigation and issue the appropriate citations against the SNF administrators and owners.

Group C staff people accompanied DOHS inspectors on their site visits to SNF to monitor departmental methods of investigating complaints and to attempt to insure that DOHS policies were followed during the inspections. Title 22 of the California Health and Safety Code provides that complainants may accompany DOHS inspectors. Approximately 5 weeks following group C’s initial complaint, the DOHS issued a report on their investigation, validating most of the charges and issuing a citation of $35,000 for seven violations which ‘substantially endangered the lives and well- being’ of the SNF residents. However, the DOHS failed to issue any citations for the three deaths due to dehydration, stating instead that ‘the elderly tend to be hypernatremic’ and that there was no evidence of neglect.

Because SNF’s administrator refused to allow group C members to visit patients, the group needed to develop new avenues for determining what the conditions were for the 90 residents. Staff and community members distributed bilingual (English and Chinese) leaflets to patient visitors and to nursing staff and other workers. The leaflets encouraged people to work with group C and informed them that they could anonymously submit patient care complaints which the organization would attempt to resolve.

Additionally, group C elicited the support of nurses who were active members of the organization (most of them had been contacted through the canvass and had attended other group C events). Group C asked them to work through the private nursing registry which was supplying most of the temporary staff to the facility. These nurses provided an important link between the patients and the community as they documented patient care problems indicating neglect or substantiating health care violations.

Over the next 4 months. reports of poor patient care continued to trickle through the hotline as a result of the leafletting and nursing observations. All reports were then submitted to DOHS for investigation. As part of all substantiated complaints, the DOHS and facility drew up plans for correction, including compliance deadlines. However, the same problems of understaffing, improper administration of medications. and improper nutrition continued to

be reported via the hotlines or other sources. Because of the failure of the DOHS to insist that the facility comply with the law, group C sought to pressure the SNF owners to improve conditions.

A delegation of group C staff. attorneys, and members met with the county distinct attorney to demand that he bring a criminal lawsuit against SNF. Within a month, the District Attorney’s Otbce of Consumer Protection filed a S250.000 lawsuit for multiple violations of the Fair Business Practices Act. Similarly, letters were sent to congressmen, state senators, and assemblymen informing them of conditions at SNF. One assemblyman was sufficiently moved by the information with which he was presented (and personally appalled by the DOHS’ lack of action of the dehydration complaints) that he requested that the DOHS meet regularly with his chief assistant and group C to discuss issues of concern to all parties about the continuing problems and investigations at SNF.

In November 1979 (6 months after the first press conference), group C received another series of complaints from an anonymous staff person alleging. among other things, that a diabetic woman was not receiving insulin as her physician had ordered. By the time the DOHS sent an inspector out to investigate the complaint, the patient had died of complications related to her diabetes. The DOHS issued a class A citation for failure to administer medication accord- ing to doctor’s orders and fined the facility S5000-- the maximum fine allowed by state law.

When community people were informed of this most recent death due to neglect. they agreed with group C staff that a candlelight vigil and press conference would be an appropriate way to refocus public attention on the problems at SNF. The family of the patient who had died also spoke at the press conference. (The family later filed a wrongful death lawsuit.) A follow-up Thanksgiving Day press conference was held by one group C canvasser who was fasting for 30 days to dramatize that SNF residents did not receive adequate food or water.

Following the candlelight vigil and Thanksgiving Day press conference, the community met to develop strategies which would put an end to the continued neglect, abuse, and deaths at SNF. This was to be the largest community meeting with approximately 75 people in attendance. At the meeting, the members drew up a list of demands to be presented to the SNF owners. A letter with these demands was signed by those present and sent by certified mail to the owners.

Because the owners failed to respond to the letter, the Community Council met again to determine what action they would take. A sense of urgency had developed among the group as they felt that although they had exhausted all traditional channels, serious instances of abuse and neglect continued to surface. The group wrote to the owners, urging them to meet with the Council in Oakland. The Council deter- mined that, if the owners refused the Oakland meeting, the Council would confront owners at their homes in Monterey, approximately a two hour drive from Oakland.

Again the owners did not respond and, as a result, 30 group C members, primarily seniors, made the trip

I300 COXSTGCE WILLIAMS

to Montsrey where they surprised the owners with a house call. The ownrrs ordered the group to leave which they quickly did. They then broke into small groups and proceeded to leaflet the neighborhood asking those that they contacted to call the owners and urge them to meet with the group C members. This strategy, a standard Alinsky inspired tactic, is called a house action.

The house action resulted in an offer from the owners to allow their attorney to meet with group C to communicate their complaints, Some members wanted the meeting while others were opposed unless the owners were present since the problems and groups C’s demands had already been communicated by mail. However, after much debate, the group decided that the group C attorney and organizer should meet with the owners’ attorney to reiterate the group’s demands and to schedule a meeting with the owners.

One month following the meeting, the owners had still refused to negotiate with the group and another complaint had been submitted to and substantiated by the DOHS documenting the same kinds of patient care problems which had been brought to attention almost one year before. The group feeling at the time was one of frustration and outrage. In a letter to the owners, the group threatened a large demonstration in the owner’s hometown if immediate negotions did not commence.

Within 10 days of sending the letter, the group was contacted by the Monterey County Nursing Home Ombudsman. She communicated the owners’ request that group C negotiate its demands through her. This was highly unusual since SNF was not located in her county and she had no legitimate jurisdiction.

However, the council agreed to a conference call between the Ombudsman, organizer, and the primary owner. The call was made the day before the next Monterey demonstration was to be held. Group C’s position was that it would call off the scheduled picketing if two of the three owners would agree to a meeting in Monterey. The position of the owner was that group C members should meet with the Ombudsman who would communicate the group’s concerns to him. Council members, after seeing the dismal effects of meeting with his attorney, were unamious in their demand for a meeting directly with the owners. Coming to no agreement, the owner terminated the conference call. The following day 25 council members picketed the two offices where the SNF owners worked as real estate agents, demanding that they either bring SNF into compliance with health codes or get out of the nursing home business.

One month after the demonstration, council members held a victory celebration and press conference announcing the SNF owners decision to sell the facility to a non-profit nursing home corporation. Council members and staff worked with the new owners and administrators to provide input regarding policies affecting patients’ rights and quality patient care. Follow-up reports from relatives of patients, nursing staff, and DOHS’s inspectors as well as site visits by group C members indicated that the quality of life for the residents remained substantially improved more than three years after the change in ownership.

It is worthwhile to analyze some of the key factors which influenced how organizing strategies were cho- sen for this project. The composition of the members of the council had a strong impact upon the direction of the project. The community council was composed primarily of people who were deeply concerned about the inhuman2 conditions but who had no direct personal stake in the resolution of the problem.

It is useful to examine why people who had no apparent direct self interest in improving care at this particular facility became involved in a nursing home project like this one. I believe one motivationcis that nursing homes represent what Friere would call a ‘generative theme’ in our society. The elderlv residents, who are poor and disabled, are usually former able bodied workers on whom people can easily project their fears about their own aging parents. friends. or relatives. ,Many group members imagined themselves or others close to them in a nursing home like SNF. Outrage at the situation was expressed by one member who said. “It is criminal the way those old people worked hard all their lives and now they’rs treated like so much used Kleenex.” People objected to the implication that, since the slderly were no longer productive, they were therefore less valuable and, consequently, deserving of subhuman living conditions.

Other members felt connected to the nursing home residents because, as taxpayers, thry were partially financing the care of Medicaid and Medicare patients. Members were angry that the owners were abls to make profits from their tax dollars while failing to provide adequate food or supplies and refusing to hire sufficient numbers of staff at a reasonable salary. Some members clearly expressed that they became involved in this project because they felt that it was one concrete way they could try to stop a large industry from exploiting less powerful individuals.

Others appeared to undergo what Friere would term ‘conscientization as the economics of the situation were revealed and discussed. After the Mon- terey house action, people were especially outraged when they saw the comparative luxury in which the owners lived, which sharply contrasted with the lives of SNF patients and those of most of the group members. This awareness which resulted from seeing directly how their public dollars were misspent on private profit and ineffective government regulation was transformed by many into political action. Several group members chose to work on legislation and governmental hearings affecting nursing home economics.

Therefore, it seems likely that while many group members may not have had an immediate self-interest in the outcome of the project, some participated because of a sense of indirect involvement as taxpayers. Others may have anticipated a future self- interest as potential consumers. A sense of participating in a small project which was part of a larger picture of social change was important to others who joined the community council. It is significant that the organization was unable to recruit any family members into the council. Initially. it was suspected that they were unwilling to participate out of fear of retaliation for associating with the group. In past

Improving care in nursing homes 1301

(and subsequent) projects, fear of retaliation was a significant barrier to recruiting family members who had legitimate concerns that their relatives might suffer some type of subtle or blatant mistreatment or neglect as a result of their association with the group. Although fear was one barrier to family participation, other factors, including guilt and denial, became apparent while talking to family members who were visiting while council members leafletted. Because relatives didn’t recognize options other than SNF (or because those who had options did not choose to exercise them), many chose instead to deny that any problems existed. These feelings were proba- bly intensified by the confrontive nature of the picket and the candlelight vigil. While these tactics were aimed at producing pressure on the administration and owners, they may have richocheted to produce unnecessary (and counter-productive) feelings of guilt and denial among relatives who could have been potentially powerful allies. Later, group C changed its policy to eliminate picketing nursing homes as a tactic because of the belief that these actions potentially alienate visitors and upset residents.

The lack of patient participation on the council also influenced the organizers’ decisions regarding choice of tactics. Organizers made one attempt to contact patients but were evicted from the facility by the administrator. Access is a recurring problem in almost all nursing home organizing projects. Al- though there is legal recourse which patients or their families may take when patients rights to associate freely with others have been violated, it is a cum- bersome, time-consuming process. The risks to the patients for participating are great. A tenant who joins a tenants’ union faces the substantial risk of eviction and possible blacklisting from other apart- ments. However, nursing home patients who join patient councils face the risk of neglectful or pur- posefully inadequate care, as well as eviction.

Retaliatory eviction presents many problems and dangers to nursing home residents. ‘Transfer trauma’ is a phenomenon of disorientation and failure to thrive which can cause death in the elderly who are improperly transferred [lo]. For example, one patient who experienced transfer trauma after he was evicted in retaliation for his participation as the leader of a patient council at another nursing home died within a few months of his transfer to a county facility. Because of a generally low occupancy rate of Medi- caid patients (in the Bay area it is estimated to be 2%) other patients who have been evicted for organizing have been placed in facilities more than 90 miles away, further isolating them from visitors and increasing their vulnerability.

Therefore, at SNF, where legitimate access had been forbidden, and where the administrator had a particularly ruthless reputation, patients were not actively recruited. In addition to being logistically very difficult to involve patients, it was felt that the risk to patients outweighed any possible benefits to patients or to organizing efforts.

The absence of open participation by patients or relatives had a strong impact upon the project. Since no one in the community group directly experienced the conditions at SNF, they were organized as a community group on behalf of the residents and their

families (and sometimes on behalf of the stafn. X strong community leadership which was willing to commit extensive time or other resources never emerged. The organizer therefore assumed a promi- nent leadership role. For example, the organizer was the primary contact with the press and a chief negotiator with the DOHS and the owners.

Many of the strategies, such as house actions. press conferences, and demonstrations, were often developed and proposed by the organizer for debate and approval by the council members. Re-evaluating several years later, it seems the project would have been more successful if organizers had developed leadership skills among the community members in a more conscientious manner. If community leadership had been stronger, it is likely that the members would have felt an increased sense of empowerment and ownership of the project and that they would have taken a more active role in initiating organizing strategies.

Previously, the term ‘community advocacy’ was defined as advocacy using community organizing techniques by one group for the rights of another group unable to represent themselves. As discussed above, one of the disadvantages of community advocacy is the risk that excessive leadership pow-er will be conferred upon the organizer. Another disadvantage to this model is that, by not involving patients or relatives, the council was left somewhat vulnerable to the owners’ and DOHS officials’ dismissal of the group as ‘outside agitators.’ However, since group C’s information was usually well-documented and substantiated by the DOHS, this label had few ad- verse effects.

Because there was little feedback from patients or their relatives on whose behalf the group was advocating, another potential limitation was that the goals achieved may not have reflected the unmet needs of the residents. Without the input of those they were trying to represent, the group’s advocacy carried all of the traditional risks of any paternalistic action.

One of the major criticisms of advocacy is that it fails to empower the ‘have-nots’, or, in this case, the residents. As a result of this project, ownership shifted from one set of owners to another. It could be argued that the residents were in somewhat improved position to assert their rights for quality care and a humane environment because of the public attention directed on their facility. However, nursing home life is characterized by isolation and alienation of the residents from each other and from society in general. Since no changes were institutionalized which provided residents with increased leadership ability or power, it is unlikely that they would actually feel able to initiate changes resulting in increased patient control.

Throughout the campaign, group C organizers did not recognize their methods as legitimate modifi- cations of traditional organizing techniques. Instead, the organization evaluated their tactics against a yardstick calling for community organizing, not advocacy, and these efforts repeatedly fell short of the mark. However, in spite of the limitations of community advocacy, it has many strengths which favor its use.

1302 COXSTASCE WILLIAMS

This case study demonstrates the failure of our ageist society to meet the social. economic and health care needs of those elderly people who are unable to care for themselves. Community advocacy. therefore. is preferred to legal advocacy or other individual advocacy approaches because the political nature of these problems requires a broader community involvement in their solutions.

The practicality of the method is further supported when one considers the difficulties involved in organizing for the direct empowerment of nursing home residents themselves. The ‘target population’ is frail and often medically or mentally unable to participate in organizing campaigns. Community advocacy allows vulnerable patients an important alternative to suffering in silence without forcing them to take the often dangerous position of chal- lenging their caretakers directly. Advocacy is able to circumvent some of the barriers to organizing erected by administrators who attempt to retain control by restricting residents’ and organizers’ access to each other, or by retaliating against patients who associate with community groups. Hopefully, this case has demonstrated how community advocacy can be a powerful method of changing the oppressive dehu- manizing environments in which many nursing home residents live.

IMPLICATIONS AND CONCLUSIOWS

The problems at SN’F were brought to public attention approximately five years ago. However, patient abuse and neglect is as much, if not more, of a problem today as it was then [I 1, p. 1453.

The proportion of elderly people who can expect to spend some time in a nursing home has been projected to increase to 40% [ 121. Nursing home costs were S2l billion in 1980 and, if current trends continue, are anticipated to reach $90 billion by 1990 (I 31. Almost 40% of total Medicaid expenditures and about 75% of Medicaid expenditures for the elderly are spent on nursing home care [ 1 I]. Because of the large percentage of elderly projected to require nursing home services, because much of this care is financed with public monies, and because many nursing homes fail to provide even the basic human requirements. there is an urgent need for major changes in the public structure which has been estab- lished to provide these services.

However. the social conditions and public policy which fostered the problems described above continue to exert their influence. The profit motive created seemingly irresistable economic incentives for SXF to sacrifice quality of care in favor of increased capitol return demonstrating that the profit motive plays an increasing role in the nursing home business. Approximately 80% of all long term care institutions are operated for profit, and there is a newer trend among non-profit acute hospitals toward operating nursing homes which generate income to be used by the acute hospitals [14, p. 4321. The growth in multi- facility. for-profit chains is rapidly increasing and replacing the individually owned for-profit ‘mom and pop’ facilities [I 5, p. 311. It is expected that by 1990 five to ten nursing home corporations will own 50% of all the nursing home beds in the U.S. [I 1. p. 1481.

During this project, the group frequently protested the poor quality of DOHS inspections and its ineffeCtive follow-up action. Many others have also found that the public regulatory efforts are seriously lacking The nursing home industry has recently lobbied effectively at state and national levels to cut back on funds for inspections and to influence other policies favoring deregulation [I I. p. 1461. It seems very likely that without even the previous weak attempts to monitor how nursing homes spend public dollars, the quality of care is sure to decline further,

Professional neglect of nursing home patients by medical and nursing personnel has been cited as another factor contributing to problems in patient care. One study found that only 14% of all physicians (compared to 48% of all physicians who are family practioners and internists) make nursing home visits [l6]. It has been argued that the absence of attentive physicians who will assume responsibility for nursing home patients and at the same time be integrated into the formal medical counseling and referral structures of the community is one of the main causes of substandard nursing home conditions [ 171.

Within the last 10 years there has been a marked increase in geriatric training programs, many of which include special training on the medical care of nursing home patients. Some argue that the quantity and quality of these programs are generally inadequate and that the number of trained geriatricians will continue to fall below anticipated need. How- ever, others argue that “Politics, economics and social structure have far more to do with the role and status of the aged than does the aging process” [19]. Therefore, geriatric training programs may be viewed as somewhat irrelevant by those who conclude that the problems facing nursing home patients are not primarily related to their medical illnesses. It has been estimated that as many as 75% of nursing home patients are medically capable of living in a more independent manner outside of an institutional setting [ll, p. 1471. However, social and economic barriers exist which promote institutionalization.

Among these barriers is social ageism which pro- motes warehousing of the elderly in institutions where they will be ‘out of sight and out of mind.’ As more women enter the full-time paid workforce, the care that they provided previously for free is be- coming unavailable. The lack of alternative community based services and the inadequate public and private financing of such services are additional barriers promoting nursing home placement. Har- rington concludes:

“In the long run, the only way to solve the problems created by the long-term care industry is to reduce the demand for and utilization of nursing home services. Even this change is threatened by the movement of nursing home chains into the ownership and management of noninstitutional programs. Efforts to restructure the nursing home industry and the whole long-term care system will require new vision and concentrated energy on the part of many groups, families. friends, physicians and health professionals. legislators and public policy makers” [I I].

It is unlikely that lasting major change in the Amer- ican system of long-term care for the elderly u-ill occur in a vacuum, disconnected from other major social forces which promote the existing system. AS

Improving care in nursing homes I303

Navarro has pointed out. one of the dangers of community struggles’ it that they fail to perceive how they are related to each other. This easily leads to isolation and failure. However. when powerful pres-

sure groups become political forces with a common project. a new social order is possible [ZO].

“Revolutions have been made when various forces with different immediate reformist demands-peace. bread. land. end of repression. social security, etc.-have come together ”

The success of this organizing project was directly related to the ability of the group to gain the support of other individuals and organizations. If the overall goals of restructuring the long-term care system are to be achieved it will be necessary to relate the problems of nursing home patients to the larger health care and social system. The limitation of this project’s ability to transform the actual context in

which the SNF patients received their care after the projects termination can be attributed to the project’s inability to form lasting political force with a sufficient power base. Future campaigns directed toward nursing home reform will be faced with the question of how to build this power base.

This case study has described how community advocacy was used successfully to oppose some of the forces impinging on the well-being of nursing home residents. Some of the factors which helped determine community advocacy to be the appropriate organizing method for this project included patient vulnerability to retaliation, patient inability to advocate on their own behalf, and the indirect nature of substantial interest and willing involvement of community members. The extent to which the community advocacy model can be applied to other organizing projects remains to be tested and evaluated.

Ackno~~~ledgemenrs-The author wishes to acknowledge Joseph Barbaccia. Meredith Minkler, Howard Waitzkin, and Karen Weinberger for their support and comments regarding the revisions of this article and Pamela Padley, from the Academic Geriatric Resource Program of the University of California, for her editorial assistance. The organizing and research activities of group C staff members Julie Armstrong, Steven Collier, Christopher Gruener, Sheila Mason and David Shulke also deserve special recog- nition. Finally, I would like to acknowledge the hundreds of group C supporters and council members without whom this project could never have flourished. The community

organizing project described was funded by group C mem- bership dues and a grant from Vanguard Foundation.

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Improving care in nursing homes using community advocacy