The emerging role of the citizen in healthcare reform
As with other social movements - think about civil rights related to disability or race - change requires the engagement of those involved in it. The public contains a significant number of citizens, who will, if properly engaged and organized, begin to support efforts to reform the system.
Long-term care has been reluctant to acknowledge the value of engagement with constitutents. Others in the social, education and helping sectors involve the person they serve with more positive outcomes both for the person and the system. This involvement permeates the entire system from the direct service to agencies, governance and the standards that they adopt in accreditation agencies. That means the people served have a voice and a vote. Long-term care does not reflect that inclusion.
Seniors' engagement has been limited under the rubric of health literacy. Current policies develop top-down results from policies formulated by owners, operators and experts often dissociated from the care provided.
A more inclusive system begins from the "bottom" up with a grassroots effort centering on the individual and collective experience of the system and their ability to report and witness on how the system works. That would require not only Medicare beneficiaries but the up to 50 million caregivers who are helping the physically challenged or chronically impaired citizens who use healthcare on a daily basis.
Present Situation: Assessing Healthcare Differently
There are a number of ways to develop a grassroots and inclusive paradigm or model for engagement and reform. They represent a different way of thinking about healthcare change and the efforts to involve and engage person served.
In America, constitutences that include those fighting for gender, disability and even cannabis rights have expanded their success. These groups, in specific ways, fought to make enterprises more responsive, transparent and accountable to their publics. The long-term sector has been traditionally unwilling to accept the application of the same rights and entitlements to its constituents. The sector is reluctant to admit even that they have vested constituents, despite a growing body of information and evidence support the efficacy of involvement of the person in their care.
This is, luckily, not a universal phenonomenon. Some healthcare systems have moved to actively involve seniors in their care. Organizations serving disabilities both physical and intellectual, as well as certain segments of the healthcare community (such as rehabilitation centers), have made significant progress. But change requires “new” thinking.
Reform involves presence and voice vote
Social movements and reform efforts begin with the acknowledgment of the presence of aggrieved and disadvantaged groups. Those who are invisible and in the case of long-term often incapable do not ferment reform. They are mostly invisible, and advocates have taken up their cause. They should realize many changes being pushed are not fair, and require remedies.
Once seniors are acknowledged by an organization, they develop a voice. When included in the system, they begin to understand how it operates. However, many times their impact is limited because they viewed as “volunteers” and not involved in actual decision-making. Administrators, owners, or boards make decisions. Increasingly seniors may see the difference between their care giving experience and the facility's operations. If they are encouraged to increase their voices, they begin to demand that they have more of a "say" which is not just being heard but considered or consulted.
That's why an empthasis on the rights of long-term care residents has to go beyond having a voice to seniors believing their vote can create change. Look at voting in an election - many say they do not vote because it doesn't make a difference or feel they do not matter.
For seniors to feel empowered, they have to move beyond having a voice to having a vote. Debated changes should require soliciting votes, and decisions should change how the system works. This allows seniors to move to involvement in reviewing the performance of the organization, setting its standards and in electing its principles. It is participation in the role of governance but with a different legitimization, constituency, and representation. It occurs initially at the organization level and moves to the regional, state and federal level. Their legitimacy is not based on organizational status, appointment or selection. It is by their "election" from and representation of constituency groups. The results will be seniors who believe their community is listening to them and respecting their choices.
James Lomastro, Ph.D., has worked in a variety of acute, community-based and long-term care in healthcare for 35 years. He has held an administrator license since 1991. Before involvement in administration, he held academic and research appointments at Boston University School of Medicine and Northeastern University.