INFORMED CITIZENS AND
EFFECTIVE LONG TERM CARE REFORM:
A CALL FOR LEADERSHIP

Highlights From This Issue

• States that have developed and maintained long term care reform movements all exhibit one common characteristic--organizations of informed citizens interested in long term care.
  
  
• Informed citizens of North Carolina overwhelmingly identified supporting older people in home and community settings as their primary goal for long term care policy at the state level. The improved quality of institutional care for older people who could not be supported at home was also perceived to be an important goal.
  
  
• The activity of citizen groups interested in long term care in North Carolina is increasing but the impact on public policy remains limited because of the lack of leadership both among citizen groups and within state government to craft a reform agenda that is responsive to citizen voices.
  
  
• The public media can and should play a much more important role in the education of citizens on overall long term care reform.

• Emphasis on the desire for independence. This theme was voiced as the guiding premise for long term care reform. In support of this premise, several of the informed citizens indicated that they belong to groups that had recently done systematic assessments of what is desired by older and mid-life consumers. The reported results of these assessments and the general comments of informed citizens left no doubt about the desire of older consumers to maximize their independence and remain in control of their personal environments and life decisions for as long as possible.
  
  
• Long term care as primarily a women's issue. Informed citizens noted that, while long term care was not exclusively a women's issue, women have a major personal interest in quality long term care. The informed citizens cited as indicative of this theme the percentage of caregiving performed by women, the economic disadvantages and often hidden poverty of older women living alone, and the high proportions of women who fill the beds in long term care facilities.
  
  
• Effects of in-migration of older adults to North Carolina. Informed citizens noted that the in-migration of retirees to North Carolina had high potential for influencing the way North Carolina approached long term care reform. Both the numbers of older migrants and the cultural attitudes of the migrants toward citizens participation were thought to be consequential. The numbers of older adults who need or shortly will need long term care is increasing rapidly. At the same time many of the migrants are coming from areas of the country where grass roots participation in public decisions has been more pronounced than it has been in North Carolina. These newcomers are likely, informants believe, to anticipate future needs for long term care accurately and insist on a voice in the development of an adequate aging services system for the growing number of older adults and their families which will require special services.
  
  
• Attitudes about aging and long term care matter. Attitudes of both professionals and older adults affect how age-related problems are perceived and affect coordination of solutions. Patronizing attitudes by professionals who feel they know what is good for older adults; denial by the "young-old" that they will ever need long term care; and the "I've earned it" attitude among some affluent older adults when issues of taxation or cost sharing arise to help fund programs for low and moderate income older adults--such attitudes make effective long term care reform difficult. Informed citizens increasingly understand this and know that more realistic attitudes must be encouraged if consensus about long term care reform is to be achieved.
  
  
• A Life Course View of Human Needs. Many informed citizens noted that, while children's issues were an appropriate concern for society, any single focus on the needs of a specific age group for human service reform to the exclusion of all others is ill advised. Their concerns lay with what they perceived currently in North Carolina as an unfortunate pitting in the policy making process of the needs of children against the needs of older adults. One older informed citizen put it very poignantly when she noted "there is not another group in the country that has cared more for or about children than older women." Women who understand the issues of intergenerational equity better than anyone else, reject the pitting of one generation against another.
  
  
• Issues of access, availability, acceptability and affordability in long term care. In addition to the unrealistic denial by some "young-old" adults that they would ever need services, some informed citizens felt that many middle and upper income older adults with equal unrealism just assume that they can access available, acceptable and affordable services when and if the need arises. They are in for an unpleasant surprise when services are required. The same adults, for example, have tended to assume incorrectly that Medicare covers long term care. They only realize the complexities of getting affordable services when confronted, often in a crisis situation, with the need. Most informed citizens interviewed did indicate that attitudes and knowledge related to this theme were increasingly becoming more realistic mainly due to the number of "young-old" adults who have had to deal with problems of "oldest-old" parents.

• Parochialism by well-meaning professionals. The informed citizens were clear that they felt that most professionals, particularly those in the "aging network," wanted to do good things for older people. Concerns expressed by informed citizens were over the "turf" battles and the failure of professionals to involve significantly non- professionals, particularly older adults, in policy making processes.
  
  
• The complexity of the "Aging Network". While most of the informed citizens interviewed exhibited a good working knowledge of the network of aging services, it was clear that such knowledge had either come after considerable study or through current or prior professional involvement with human services. Several informed citizens indicated that the "aging network" was so cumbersome and time- consuming to understand that their memberships and community groups in general found care systems difficult to study, much less to understand.
  
  
• The low level of awareness of the opportunities that do exist for participation. Several informed citizens indicated that even among their core group members a general interest in long term care is not enough. Adequate knowledge of the existing opportunities for participation in long term care reform is missing or poorly developed. Citizens need help in identifying sources of information and avenues of participation.
  
  
• The non-elected structure and advisory nature of most aging councils and committees. Some informed citizens went beyond issues of complexity and parochialism to indicate that they thought that most aging councils and committees were not true conduits for citizen voices because the members of these organizations are selected, not elected. And, in any case they are mostly advisory in nature rather than decision making bodies. One citizen advocated "true" councils that would be elected and have policy making authority. Another indicated that she thought that the recent involvement of county commissioners in the Home and Community Care Block Grant approval process was important even though the commissioners' knowledge of long term care issues was still rudimentary in many counties. Involvement in a learning process may lead to the expectation of more accountability for decisions being made.
  
  
• The denial by middle and upper income older adults that they will ever need services. This point has been mentioned but needs to be reiterated here. Well older adults can be inappropriately short sighted about their future needs. Informed citizens observed that the wellness of some older adults leads them to an unrealistically complacent view about the services they will eventually need. The corollary to this point is that most policy makers gauge citizen participation by the number of persons actively demanding change at any given time. Attention should be given to anticipating and publicizing how many people will ultimately have a vital interest in the adequacy of long term care policies.
  
  
• Burnout that can result from the stress of caregiving. Older adults who directly consume significant long term care services and, therefore, are most knowledgeable about the problems of long term care programs, often lack the stamina to launch and sustain advocacy efforts in long term care reform. Consequently, their experiences and the changes in the system they desire are often left to their caregivers to express. Several representatives of consumer organizations, however, indicated that, while some caregivers have made outstanding advocates, others often become burned out with individual caregiving and do not have the energy to pursue broad long term care reform.

• Citizen leadership. Some of the most hopeful and most involved citizens identified the need for committed and sustained citizen leadership on long term care reform issues. These informed citizens felt that they and other potential leaders needed education not only on long term care issues but also in the craft of leadership itself. Several felt that the only way to sustain serious leadership on an issue with the complexity and magnitude of long term care reform was through professional staff support. They even identified what they thought were effective models of citizen leadership with staff support on other issues. The two mentioned specifically were the NC Child Advocacy Institute and the NC Health Access Coalition.
  
  
• Administrative leadership in government. Heretofore the administrative leadership in long term care has been quite diffuse in North Carolina at both the state and local levels of government. Some recent developments are notable. From the community care side, there has been some clarification of responsibility through the Division of Aging's lead role in staffing the Home and Community Care Committee and the designation of the county commissioners in each county as approval points in the Home and Community Care Block Grant process. Still, there is no single focal point with both the mandate and authority to develop and implement a comprehensive long term care system in North Carolina.
  
  The Department of Human Resources should designate leadership that has authority and encouragement from the Secretary of Human Resources' and the Governor's offices to work with citizen groups and other interest groups in crafting such a system. Through developing productive non-adversarial relationships with such groups, policy that is truly in the public interest, as opposed to narrow special interests, can be crafted.
  
  This recommendation is quite distinct from suggesting that government officials can become staff to citizen group advocacy efforts. That will not work, as some informed and politically experienced citizens interviewed for this analysis indicated.
  
  What will work is an open governmental process that impresses upon administrative leaders the importance of being responsive to the needs and wishes of citizens, not only at the individual consumer level but also at the level of broad representative coalitions of citizens. Effective administrative leaders in government understand that the dialogue developed through productive relationships with citizen groups both allows for the groups to voice their legitimate preferences and desires and for government to educate the groups on policy options and resource limitations.
  
  
• Legislative leadership. Legislative leadership in long term care reform in North Carolina has been even more bland than administrative leadership. While there have been some visible efforts on the part of a handful of legislators, mostly women, their numbers are actually shrinking. Some of the recent decline in legislative interest is explained by incumbents whose bids for re-election have been unsuccessful and by other legislators who have diversified into other interests. The dwindling numbers of past leaders on these issues does not explain, however, why no new legislative "champions" appear to be on the horizon. Citizen legislators may face many of the same barriers as other citizens with respect to understanding just how to reform a complex system, but it seems a grave mistake on the part of legislative leadership not to ensure that there is sustained expertise in long term care within the General Assembly. We repeat here the theme with which this paper began: Significant long term care reform, if it occurs, is most likely to occur where states take the initiative.
  
  There must be legislators in key positions in the General Assembly who understand that long term care reform means controlling long term care costs, providing simplified access for older citizens, particularly the frail, and providing a greater proportion of services in home and community settings where older people want to be served.
  
  
• Media Leadership - Knowledge is Power. The dissemination of accurate and timely information about reform options was also highlighted as a crucial factor in citizen participation. Media leadership has an opportunity as well as an obligation in promoting long term care reform. Several informed citizens noted that information relayed through the public media on institutional care issues had made some difference in specific reform efforts. The same impact was not mentioned for overall long term care reform or home and community care reform efforts for a good reason: The primary media outlets in North Carolina have been virtually devoid of coverage on these important topics in the recent past. What little in depth coverage of reform issues that has occurred has been in the specialized monthly newspapers aimed at the older adult markets.
  
  While such coverage is understandable and a contribution to older adult awareness of issues, it should not take the place of general media coverage. Long term care reform issues are societal issues not just older adult issues in the same way that education of children is a societal issue. Many North Carolinians know that the Basic Education Plan (BEP) is an element of education reform. Some citizens can even debate its merits based on extensive coverage on educational reform by the media. It is arguable that far fewer North Carolinians would know what the Home and Community Care Block Grant is even though it has now affected all 100 North Carolina counties. The public media can and should play a much more important role in the education of citizens on overall long term care reform.