Identify and discuss the pros and cons of one federal health or mental health policy. What political, cultural, or economic factors have influenced the development and implementation of the policy?

Identify key issues, challenges, and opportunities in health care, mental health care, substance abuse prevention, and disability care. [EPAS 5]

Identify ways in which a “social problem” is acknowledged and defined within a Health Care, Mental Health or Substance Abuse context. [EPAS 5]

Analyze causal influences on how a social problem evolves and identify the short and long-term consequences of the problem. [EPAS 5]

Question 1

Identify and discuss the pros and cons of one federal health or mental health policy. What political, cultural, or economic factors have influenced the development and implementation of the policy? Describe the American with Disabilities Act of 1990 (ADA) and explain the impact of this piece of legislation in providing civil rights protections for people with disabilities. Discuss the differences between drug treatment and drug enforcement. Which is preferable for dealing with substance abuse? Why?

This discussion question is informed by the following EPAS Standards:

2: Engage Diversity and Difference in Practice

5: Engage in Policy Practice

Question 2

Assessment Description

What are two possible policy options for a national health care plan? What are the possible short- and long-term consequences of each plan?

This discussion question is informed by the following EPAS Standard:

5: Engage Diversity and Difference in Practice

Question 3

Policy Analysis for Change

Introduction and Conclusion

Use the attached “Topic 3 Assignment Template” document to complete this assignment.

This assignment uses a scoring guide. Please review the scoring guide prior to beginning the assignment to become familiar with the expectations for successful completion.

While APA style is not required for the body of this assignment, solid academic writing is expected, and documentation of sources should be presented using APA formatting guidelines.

This assignment is informed by the following EPAS Standard:

5: Engage in Policy Practice

Requirements: 1500+

Project Access: a small group effort to improve access to mental health care in the U.S.

Pages 167-171 | Received 15 Jun 2019, Accepted 05 Jul 2019, Published online: 11 Jul 2019

ABSTRACT

In 2008, the Mental Health Parity and Addiction Equity Act became law in the United States. This law affirms that all people in America should have a right to health-care benefits, including needed mental health and substance use services. The law demands that the federal and state government ensure that public and private health plans make certain that people have access to needed behavioral health care and treatment on the same terms and conditions as care and treatment for any other illness, without regard to diagnosis, severity, or cause. The reality, more than 10 years later, is that health plans do not fully comply with the law and government does not adequately enforce it. The author tells the story of organizing a small group of mental health providers, consumers, social work researchers, attorneys and advocates who got together to launch an action research project aimed at addressing this issue and improving access to care.

KEYWORDS: 

One hazy mid-August afternoon in the 1990’s, I was cooling off in the ocean off my hometown, Long Beach, NY. Another swimmer grabbed my attention by pointing toward the jetty, the rock formation that helps to protect the shoreline from erosion. When I turned, I spotted three children drifting toward the rocks.

I swam to them. When I arrived, there were three little girls with their arms wrapped around one another. One looked to be about 9-years-old. The others, who were crying and holding on to the older girl, appeared to be 6 or 7. The older girl was barely in control of her emotions.

I wrapped my arms around the three girls and told them to hang on. Swimming to shore with them as a group was not an option. Neither was leaving them behind. All I could do was hold on, try to calm them, steer them away from the jetty and wait.

Finally, the lifeguards arrived and took over. I swam to shore and went back to my beach chair. I never saw the three little girls again. Nevertheless, I haven’t forgotten them. Twenty-five-years, ninety-seconds and two words – “hang on,” and I still think about them quite often. For those few moments we were so close that I could see their freckles.

Let’s consider another scenario. Try to picture me swimming to the three girls. Now, imagine if, instead of my telling them to hang on, if I treaded water just a few feet from them and asked them if they had Medicaid insurance (a federal and state program providing health coverage only to certain groups of people with low financial assets). Imagine if the girls answered, “No mister” and if I then said, “Sorry, girls,” turned my back on them and then swam to shore without them.

I thought about this because aside from my enjoying the beach in my hometown, I have been working in the children’s mental health field on Long Island for more than 40 years as a psychotherapist, alcoholism and substance use counselor, agency administrator and advocate; all those years at North Shore Child and Family Guidance Center, a 66-year-old children’s mental health agency in Roslyn Heights, NY.

It was my role as advocate that was evoked by my encounter in the Atlantic Ocean. During the last 10 years-plus I have observed, first-hand, New York State making a dramatic departure from its statutory responsibility to make sure that our most vulnerable citizens – our children – get community-based mental health care, regardless of their family’s economic status.

I’ve also learned that the U.S. health insurance industry is no better. Most private health insurers pay substandard rates that many mental health care providers can no longer afford to accept. Even worse, profit-driven insurance denials and delays for care have actually killed children.

For example, in 2001 Timothy O’Clair, a 12-year-old from upstate New York, died by suicide after his parents were unable to obtain timely mental health treatment for him due to health-insurance coverage limits. As I always say, access delayed is access denied.

Although Timmy’s death was the impetus for the passage in 2006 of Timothy’s Law, which extends insurance coverage for mental illness, the health insurance industry has a very long way to go. And, this is despite the fact that two years after Timothy’s Law passed the New York State legislature, the federal Mental Health Parity and Addiction Equity Act of 2008 became federal law.

As Timmy’s story illustrates, it’s a heartbreaking scenario that is far too common: Someone makes the difficult decision to seek out professional help for a mental health or substance abuse problem for themselves or their loved one and is faced with a myriad of roadblocks. They start calling providers on their health insurance plan and find that they are not taking new patients, or they no longer accept insurance and only want cash. And the cost of paying out of pocket is too much for many to afford.

Here is the reality: Health insurers are required by law to offer an adequate network of providers for their beneficiaries to choose from, and not just for physical illnesses. This requirement is known in the U.S. health insurance industry as network adequacy.

Along with the difficulty of finding a provider who will accept your insurance, the problem is often complicated by a family’s reluctance to seek help for a mental health or substance use problem, as opposed to physical illnesses like cancer, asthma or diabetes. Despite progress in public education, stigma still looms large.

Once someone takes the leap of faith to ask for help, he or she is too often told, “I’m sorry, I don’t accept your insurance any longer.” When this happens there is a chance they will give up.

It is this reality that spurred me to launch an action research initiative that I called Project Access. This entailed forming an advocacy group. The Project Access Advisory Group included frontline practitioners, social work administrators, attorneys, researchers, and parents of children living with mental illness or substance use disorders, all of whom experienced the felt need to take this on.

The group created the survey together. Having a combination of consumers and providers was crucial to arriving at the right questions. Three of the members of the group were university professors and researchers. Their role in the group was invaluable in finalizing the survey, getting IRB (Institutional Review Board) approval, collating the results and analyzing them quantitatively and qualitatively. The survey was completed by almost 650 people across Long Island, New York in 2017.

Here is some of what we found: almost 50% of the participants said that it was more difficult finding help for mental health or substance use problems than finding help for physical illnesses, especially when they were in crisis; nearly 40% said that their health insurance company did not have an adequate number of providers; 66% reported that their insurance company was not helpful in finding a suitable provider for themselves or a loved one. In response to an open-ended question, one survey respondent wrote: “A family member within my household required therapy and we had difficulty finding a provider; when we did, scheduling was a nightmare because so many patients were trying to see him. I believe it was because he was one of the few willing to accept multiple insurance policies.” This was a familiar refrain.

Health insurers reimburse mental health and addictions care providers at such low rates that they flee health insurance companies in droves. This is a civil rights issue and a situation that puts lives at risk.

The New York State agency that is charged with monitoring and enforcing network adequacy is known as the Department of Financial Services (DFS). The Project Access Advisory Group used the Project Access data to demand that the NYS Governor and DFS launch a full-scale investigation of access to care in New York State and to hold commercial health insurers’ feet to the fire.

To that end we planned a press conference in December, 2017. We structured the event to include state legislators, media outlets, consumers, mental health educators and advocates and providers. Speakers included two New York State Senators and the then president of the local branch of the National Alliance on Mental Illness (NAMI), each of whom stated that they were personally touched by mental illness and drug addiction in their families. Of the Project Access study, the legislators said, “We knew this was true and now we have the data.” Both senators signed on to supporting our major aim, which was to call for a state-wide probe of access to care.

The senators wrote to DFS and confronted the agency’s commissioner face-to-face with our demand. Nevertheless, at each turn we were stonewalled by letters written in confusing legalese that contended that they had everything under control. Fortunately, we had two lawyers on our Project Access group who took on the task of translating their letters and fashioning responses in their language.

Fast forward. As a result of our work on Project Access we were invited to join a national advocacy effort known as Parity at 10, connotating the 10th anniversary of the passage of federal parity law, along with a broad array of mental health and substance use providers, attorneys and consumers across New York State. This collaboration led to the December 2018 enactment of the Mental Health and Substance Use Disorder Parity Report Act.

The new law will require commercial health insurers to submit key information to the NYS Department of Financial Services (DFS) for analysis and evaluation of compliance with federal and state parity laws. The intent of this provision of the new law is to advance the need for greater accountability and transparency.

Until now, existing parity laws – which demand that coverage and treatment for mental health and substance use disorders are on par with the coverage and treatment of physical illnesses – have been widely ignored, putting lives at risk. The failure to enforce parity laws was made clear at our Project Access press conference in December 2017.

This new legislation, which was passed one year after the release of the Project Access study, is a shared success and would not have been possible without strong grassroots support that included an enormous volume of letters, calls and social media posts from consumers and other advocates.

The challenge ahead will be to hold New York State government accountable, ensuring that they are taking adequate steps to verify the data and information that will be provided to them by health insurers.

Verification is essential to determining, for example, if the networks of providers on a health insurer’s plan are in fact real as opposed to deceased, retired or no longer accepting insurance. They must also verify and report when waiting lists of valid providers are so long that access is delayed beyond a reasonable time with respect to the urgency of the need.

As indicated earlier and worth mentioning again, one reason for the paucity of mental health and substance use providers is the substandard rates of reimbursement that health insurers pay such providers, as compared to what they pay physical health care providers.

In addition to this promising advancement in New York State, in April 2019 a federal court in the Northern District of California found that the giant health insurer United Behavioral Health had been using flawed criteria, contrary to generally accepted standards, to determine medical necessity for the care and treatment of patients with mental health and substance use disorders.

This decision fires a powerful warning shot at all health insurance carriers who cut corners in determining medical necessity without regard for quality of care, and whose sole aim is enriching themselves at the expense of their beneficiaries living with mental health and substance use disorders.

Now, according to leading mental health advocate and former congressman Patrick Kennedy, a federal court is making it clear that there will be consequences for disregarding established standards of quality care in favor of a financial bottom line.

We are making incremental progress, one small group at a time.

The Advocate’s Compromise: Strategies and Tactics to Improve the Well-Being of People with Diminished Status

Pages 277-292 | Published online: 17 Jul 2014

 

 

In this article

Abstract

In this paper, I examine how advocates seek to improve the well-being of recipients who reside in organizations or systems of care in which factors influencing risk and jeopardy prevail. I use data from multiple action research projects to frame what I call ‘the advocate’s compromise’: in systems and organizations regulating people who are considered vulnerable or dependent the advocate must advance collaborative relationships with care providers and supervisors so they become allies in advancing the well being of their charges. I place the advocate’s compromise in context by amplifying a theory of diminished status, which offers a rationale for advocacy in social work. By identifying variation in its forms I illuminate the richness of advocacy practice in which the compromise is readily observable. In considering the context influencing the practice of advocacy in social work, I elaborate central aspects of the compromise, and reveal some of its ethical demands. Finally, I delineate principal strategies and tactics I have observed advocates employ to make the compromise a useful tool, particularly in total institutions, so incremental and limited advancements can make marginal improvements to a recipient’s well-being without threatening the regulatory regime of care or supervision.

Keywords: 

While advocacy is prominent in the domain of social welfare and in the profession of social work, there is considerable diversity in its form and practice (Freddolino, Moxley, and Hyduk ). Within social work, advocacy can vary by systems level, and can take place within direct practice, community and organizational forums, and at institutional and policy levels (Moxley and Paul ). Social workers may incorporate advocacy into specific professional roles, like case management, or group work, or it may stand alone as a distinctive role when social workers represent the interests of people who face serious challenges and barriers to their well-being in particular contexts.

Representation of people who may be unable to speak on their own behalf, prominent in forms of rights protection, and in some forms of guardianship, is likely geared to supporting the well-being of people whose statuses are diminished. Sometimes dramatic differences in cognitive, emotional, behavioral, physical, and/or constitutional qualities can place individuals in jeopardy due to deprivation, oppression, and social marginalization. And it is such qualities that can situate people within the confines of total institutions, or in segregated geographies, such as communities with poor infrastructure, thereby placing them under the control of specialized facilities and direct care or supervisory personnel who come to regulate their behavior, conduct, benefits, and opportunities.

It is such regulation that can influence dramatically the level of well-being a person can realize across the life course, and in their daily lives (Ravaud and Stiker ). Additionally, a society’s disinvestment in those institutions and communities may set profound limitations on the ability of care providers and supervisors to bring about fully or even partially the conditions that produce an acceptable level of well-being among people who are under their care or supervision.

In this paper, I frame what I call the ‘advocate’s compromise’ and argue how this compromise is actually a proactive strategy of advocacy designed to improve incrementally the well-being of people who are dependent on systems or organizations of care in which there is the potential of neglect or abuse. Advocates too often must balance an assertive representation of individuals with the realities that supervisory personnel can either sabotage care or retaliate against a recipient when the advocate leaves the setting even temporarily. Within this paper, I address my own experience in advocacy research, examine diminished status as an encompassing rationale for advocacy in social work, offer a conceptualization of advocacy, and address the compromise in action.

Bracketing Advocacy through Multiple Action Research Projects

The concept of the advocate’s compromise is a product of multiple action research projects I have undertaken in the area of advocacy over the past 13 years cutting across four principal projects. By action research I mean my direct engagement of advocacy as something I come to understand through multiple forms of observation in real-life action settings with the aim of creating advocacy interventions in social work practice (Moxley and Washington ).

One principal source of data involved my inquiry into advocacy undertaken through participant observation, interviews, and document review of a public guardianship organization in the United States. The mission of this entity was to protect and advance the well-being of people with severe disabilities living in institutional and community-based residential alternatives operated under multiple organizational auspices. A second project involved a long-term action research project (lasting over 10 years) in which a colleague and I engaged through advocacy older African American women who became homeless late in life. The third source involved an intensive short-term inquiry into an intentional community facilitating the personal development and well-being of people with moderate and severe cognitive limitations in which I was involved as a participant observer.

Diminished Status as Rationale for Advocacy in Social Work

 captures the theory of advocacy I have fashioned out of 47 narratives of practicing advocates who portray the essential features of their work within total care institutions. The schematic diagram is a product of my analysis of narrative interviews I completed with five advocates working with homeless individuals, 38 advocates serving in rights protection, and advocacy and guardianship positions, and four advocates who worked with people coping with serious mental illness. Collectively those advocates offered some 250 person years of experience, and were involved in the direct practice, supervision, and administration of advocacy.

Figure 1. Need for advocacy.

The base of the diagram reflects the cultural rationale justifying the need for advocacy. Here the features of the society involving the legitimization of power, the endorsement of preferred body forms, stereotypic portrayal of preferred character, cognitive, and motivational states, and the central value base of that culture set the stage for advocacy. Box 1.2 within  highlights those values: a preoccupation with materialism, the centrality of economic consumption, and strong meritocratic systems create differential valuing of individuals, groups, and communities (Gil ). Factoring in a weak system of social rights, and a weak social welfare institution, further justifies the necessity of a strong advocacy capacity and response on part of social work (Moxley and Washington ). It is those social forces that weaken the well-being of individuals who fall outside of the culture’s scope of desired virtue and, as a result, those individuals violate what the greater society finds acceptable in character and functioning (Douglas ; Washington and Moxley ).

As I indicate in , cultural marginalization accelerates devaluation as the second principal risk factor. Individuals may embody the greater society’s valuation of them leading to a range of unwanted personal behaviors (see Box 2.3 of ). Those individuals may be seen as violating purity standards the greater society enforces and may come to be seen as lacking competitive fitness as negative stereotypes surrounding the individual and particular groups take root in the society (Douglas ). This devaluation legitimizes social control and the assignment of a diminished status to those individuals is a strong possibility.

What may ensue for those individuals whose status is then diminished is a reduction in their normative competence, which I identify as the third principal risk factor in . People experiencing this possibility in turn may find themselves with a degraded identity, weakened self-efficacy, and exposure to considerable environmental deprivation, a product of discrimination and oppression occurring within a context of weak or nonexistent social rights or claims (Nussbaum ). Diminished self-regulation results and can justify a negative societal reaction. Societal agents may simply see such individuals as a threat to the established social order, as dependent, or as redundant. Such societal reaction, which for me forms the fourth principal risk, gives way to encapsulation, the fifth risk. The person may suffer neglect or abuse, may experience social dislocation, isolation and deprivation, or may come to be institutionalized, which occurs increasingly in American society through the excessive use of incarceration targeting particular groups (Nussbaum , ; Alexander Page and West ).

Vulnerability emerges when an individual and group experience those risks and they then experience the full force of social reaction. I use the term vulnerability to involve a diminished well-being and quality of life that influence poor life outcomes. Each risk fulfilled in someone’s life adds to their vulnerability. At least theoretically, advocacy in social work addresses both the risk factors and their expression in vulnerability (Moxley, Washington, and Feen-Calligan ).

The advocate’s compromise is a strategy guiding how social workers address the realities of societal reaction and management of people who do not readily fit the prevailing cultural ideal. Diminished status is a direct threat to the achievement of personal well-being and yet social work advocates, at least in the United States with its limited social provisions and benefits, likely do not have a full plethora of tools to bring about an appreciable change in a person’s well-being. Indeed, from my own research, I find that advocates likely work incrementally in resolving those issues they can best influence and are most strategic in helping an individual live free of neglect or abuse. Given the realities of vulnerability an effective response by advocates is likely weak unless there are established rights whose fulfillment people can demand.

Conceptualizing Advocacy in Social Work

Variation in advocacy based on four social work traditions

For Freddolino, Moxley, and Hyduk () four traditions characterize advocacy in social work. These traditions involve protecting people who are vulnerable, creating environments that support a person’s functioning, advancing the claims or appeals of individuals whose status is diminished or protecting those claims, and supporting or advancing the identity of individuals who experience negative societal reaction. Those traditions, according to Freddolino and his colleagues, shape the four types of advocacy within social work. In best interest advocacy the social worker represents the needs of people who cannot speak on their own behalf while in person-centered advocacy the social worker identifies essential aspects of well-being and seeks to involve recipients as much as possible in articulating their own needs (Hyduk and Moxley ). It is in enabling advocacy that the social worker fulfills the ends recipients identify for themselves and it is consumer-controlled advocacy that people with diminished status represent their own interests and desires through mechanisms they find acceptable, particularly in forming supports systems under their direct control, or those of their peers (Moxley and Freddolino ; Charlton ; Litvak and Enders ). For people who become activists because of the deprivation or oppression they experience an empowered strategy of self-advocacy may serve as the only legitimate form.

Status enhancement as the aim of advocacy

When examining the types of advocacy Freddolino and his colleagues identify one sees how advocacy is augmentative. Advocacy seeks to augment the status of the individual either helping advocacy recipients exercise their rights—as in the case of enabling forms of advocacy—or in protecting people by insulating them from potential neglect or abuse. Both advocacy forms emanate out of the active involvement of the professional social worker as advocate who is seeking to advance the well-being of individuals who likely either cannot speak on their own behalf or assert their desires, wishes or objectives. Here the professional social worker serves as a means to an end. The ends likely involve the advancement of well-being and it is up to the social worker advocate to best represent what the person seeks (in the enabling variant) or to best interpret those aims when the person cannot speak on their own behalf (as in the best interests variant; Freddolino, Moxley, and Hyduk ). Such forms of advocacy may be inherently paternalistic.

Advocates may correct for the power they hold in such situations by investing their best efforts in constructing rich portrayals of a person’s desires or wishes. It is the social worker’s ability to speak richly and accurately about a person’s well-being that imbues them with significant legitimacy. To achieve this aim, a social worker advocate may interview family members, pour over clinical records, observe the person directly in situations of everyday life, or create dialogues among care providers or supervisors in order to identify recipients’ desires and conditions under which they thrive.

Such discovery and characterization serve tactical purposes: they help social work advocates achieve a deep appreciation of the individuals they represent and the strengths or limitations of settings ostensibly designed to nurture them. It is through such discovery that the advocate gains the insight needed to personalize the protégé and to speak of the person’s well-being in intrinsic terms rather than invoking purely normative characterizations.

In person-centered advocacy the social work advocate will likely intensify the portrayal of the recipient’s personal qualities and desires (Moxley and Hyduk ). Settings that strip people of their personal qualities engage in a form of violence (Ford ) manifest in depersonalization. So here strategically the advocate is seeking to make the person so distinctive within the setting that care providers cannot help but find endearing the recipient’s personal qualities and personhood. The distinctive properties of this form of advocacy play off of the capacity of the social worker as advocate to reveal those sources of satisfaction, situations, and activities or opportunities the person finds rewarding or fulfilling.

The essence of advocacy here involves the social worker in pleading for those qualities to be factored into the care or supervisory situation such that the well-being of the person increases. Status enhancement occurs here as a function of the personalization or humanization of the person under care or supervision. The staff members who are responsible for their charges can come to see them as unique and distinctive in their own right, which is likely central to the augmentation of well-being, and improvements to those contexts in which well-being is an outcome or product.

Lastly, consumer-controlled advocacy may be difficult to realize in settings in which staff members are dominant and controlling and where routine is institutionally defined and enforced. When there is a culture in which power sharing is prominent, or in which consumers themselves exercise control, status enhancement ensues when those consumers gain considerable decisional authority. While too often nominalistic, true self-governance, peer and mutual support, peer helping, and alternative leadership roles can come to serve as important qualities of culture in which the members represent their own interests independent of professional advocates. Social work advocates may be pivotal in making such cultures happen but they may become less significant as the members of the culture gain control over their own circumstances thereby achieving statuses in which they hold considerable standing within a given setting.

Paradigms of advocacy

Reactive paradigm

While there are multiple types of advocacy, I have identified two dominant paradigms relevant to addressing diminished status of recipients, particularly those individuals who must rely on the beneficence of larger scale organizations or systems to address their well-being. A reactive paradigm of advocacy, one dominant in most social work, addresses unfulfilled needs or acts of commission or omission that may result in neglect or abuse (Moxley and Paul ). Here the advocate’s compromise is not operative. Within total institutions external advocates (such as public guardians) can exercise considerable vigilance to ensure that the dependent individual experiences neither neglect nor abuse, or that conditions producing risk and vulnerability are addressed to prevent the occurrence of such events.

Advocates involved in the guardianship interview study I conducted identified their advocacy as centered in best interests: For these advocates, individuals, those who could not speak on their own behalf because of cognitive or situational limitations, would be free of both incidents of neglect and abuse, and of the conditions creating risk. To enforce this aspect of well-being, the public guardians were often times reacting to specific issues or incidents, perhaps involving deprivation, denial, the foreclosure of opportunities, or the absence of activities and freedoms the recipient would find enriching.

Advocacy embodying a reactive paradigm may be necessary in settings in which care is bureaucratized and proceduralized. Inadequate resources produce considerable challenge in personalizing individuals in terms of what they value and how they define personal satisfaction. In those contexts, personalization and the matching of opportunities to individual preferences may create considerable stress for caregivers or supervisors. Those individuals may in turn simply overlook possibilities for advancing well-being discounting them as unnecessary or burdensome. Such settings can generate numerous issues that an advocate must address on behalf of an individual to produce any semblance of well-being (Washington an Moxley ). Here advocacy becomes a set of tactics to resolve issues that threaten a recipient’s well-being.

Proactive paradigm

But what if the setting begins to resolve issues and reduces their production? Does a need for advocacy remain? My interviews with those advocates serving in public guardianship roles and my participation in an intentional community designed specifically to augment the well-being of people with developmental disabilities reveals how such situations come to embody a paradigm of what I call proactive advocacy. This paradigm moves well beyond issues because the setting focuses principally on the advancement of well-being.

The context of proactive advocacy occurs when the setting itself refrains from amplifying personal limitations and alternatively focuses on the strengths of people as individuals and within their group life, and offers an appreciable level of self-help and mutual support. Such settings prize what long ago Nirje () characterized as the ‘dignity of risk’ and Wolfensberger () called ‘social role valorization’. Advocacy here (inherent in the person-centered and the consumer-controlled variants) is developmental: it seeks to frame opportunities, benefits, and activities that advance the well-being of individuals, groups, and the community as a whole and thereby bring about considerable well-being of members. The ethic here may be more focused on creating a supportive setting for all rather than advancing the well-being of only one individual (Moxley and Washington ).

There are very promising exemplars of this paradigm of advocacy in the human services. Camphill communities exemplify the human development model in action (Bock Citationn.d.). Through whole community development incorporating considerable support for individuals and their group life, the members of a Camphill community will personalize each member (Pietzner , ). As a result, the members collectively will come to valorize the strengths of each individual and honor the person’s use of those on behalf of the community, that is, in service to the creation of community that encompasses a collective well-being. The limited availability of professional staff requires the community itself to call upon those who would otherwise be dependent in other cultures to make important if not central contributions to the advancement of individual, group, household, and community well-being.

A movement from settings that fail to meet human needs and thereby create numerous serious issues that then compromise well-being to settings that make positive collective human development of all members an explicit objective reveals the difference between reactive and proactive paradigms of advocacy. The implications for realizing well-being are instructive here. The infusion of spirituality and practical helping, as Vanier (, , , ) describes, is often a cornerstone of this kind of community building among people who are readily devalued and those who serve as principal sources of support. While social work by virtue of its ethical duty must resolve what is often times an explicit threat to an individual’s well-being the profession likely wants to create settings in which positive collective human development is the central focus. In this sense, reactive advocacy in social work may stand as a deontological code guiding immediate professional responsibility and action. Proactive advocacy is more teleological in shaping the long run goals of the social work profession inherent in its efforts to create stronger and more inclusive communities.

The Advocate’s Compromise and Its Ethical Demands

For people whose status is diminished the risk of neglect and abuse becomes heightened by social and interpersonal dynamics that are not necessarily or likely under their direct control. Contexts and settings matter such that people under the control of total institutions, residential programs, or treatment regimes, can experience a serious compromise of their rights. Within the history of advocacy in the United States there is ample evidence testifying to how the regulation of people with diminished status, particularly those individuals who possess qualities that either violate prevailing societal norms of acceptability in behavioral or physical forms, results in augmented oversight by third parties.

Those third parties who fulfill the roles of advocates serve as a check against the considerable power professionals and organizations can exercise over dependent people. Within the United States, the country in which I have the greatest familiarity, advocacy emerged in the 1960s and 1970s as a vital force in human and social welfare policy, and in human management models, when national efforts sought to protect specific groups including people with physical disabilities, children with disabilities in educational settings, the elderly, and people with cognitive limitations. In later decades the extension of such provisions to other groups, such as people coping with serious mental illness and serious physical illness, like HIV disease, and sexual orientation, created a much larger tent of protection.

Third-party advocates who are often times social workers but who also may be volunteer citizens, family members, peers, lawyers or paralegals, or other health and human service professionals, likely serve as representatives. Their responsibilities are to protect or otherwise advance the rights of people with diminished status and thereby elevate the status of those individuals as human beings who deserve a scope of care that brings about positive outcomes of well-being. It is in the process and outcome of status elevation that advocacy likely finds its purpose thereby separating it from other human service and helping roles in social work.

Status enhancement is inextricably linked to well-being since it involves the claims a person can make that results in better treatment and care. In particular, a broader scope of benefits and opportunities that humanize anyone but particularly those individuals whose very deprivation can dehumanize them can foster a more equitable society. While social work often speaks of advocacy as a process I frame advocacy in terms of its principal outcome: as involving the elevation of a person’s status whose status is or can be diminished by societal forces and by negative societal reaction. Such elevation means that a person not only deserves those opportunities, provisions or benefits that enhance their well-being, but that they can demand those in light of the rights attached to their status.

It is here I raise a critical ethical concern. While advocacy suggests a potentially adversarial relationship between a person’s representative and those who regulate their care (or confinement), it is more likely that advocates must negotiate the amenities they seek for the people they represent. When a person is under the care or supervision of a total institution, like a community residential facility, or prison, the advocate cannot exercise complete oversight of the recipient’s situation nor can the advocate stipulate the provision of resources for a particular individual given the very real constraints the setting likely imposes. Thus, the advocate must negotiate the provision of those necessities and amenities or what Gil () refers to as life sustaining and life enhancing resources. The advocate must likely accept some constraints in realizing fully what a person requires or wants to achieve a level of well-being the advocate or recipient defines as desirable or even necessary.

Because of their training, values, and ethos, advocates who are professional social workers likely practice a person-centered form of advocacy. The aim here is for social work advocates to personalize recipients such that their well-being is a product of those opportunities that accentuate personal interest and sources of personal satisfaction. Such personalization humanizes people who may be seen by those in power within the settings as less than deserving or even as less than human. Those providers or supervisors may argue that limited resources prevent such personalization thereby requiring the advocate to compromise even more. However, I suggest that it is the compromise itself that advocates use to advance albeit incrementally the well-being (defined as personalization) of an individual whose status can be easily diminished.

An ethical imperative forms when person-centered advocates seek to elevate the status of those people whom they represent, and protect them from any negative consequences the advocacy itself can set in motion. This imperative here requires an advocate’s mindfulness of the constraints of the setting and its culture. And it requires of advocates a mindfulness of how those constraints may reduce the willingness or capacity of care providers or supervisors to fulfill external expectations inherent in those enhancements to well-being advocates may communicate on behalf of the people they represent.

Ethically, in maintaining what is likely a delicate equilibrium, the advocate is engaging in an effort to balance breakthroughs in advancing the well-being of a person with what the institution has the potential or willingness to fulfill. From an ethical stance, such a dynamic constitutes what I call the advocate’s compromise. It reflects a challenge in relationship ethics: how does the advocate use collaboration with caregivers and supervisors of people whose status is diminished in a manner that elevates the standing of those individuals who are dependent on the setting and its personnel?

Principal Advocacy Strategies

The relational approach and sympathetic regard

The strategies emerging from multiple data sources reflect the relational ethics involved in advocacy practice in which the advocate’s compromise operates. What follows is an excerpt from my own field notes crystallizing the nature of the advocate’s compromise:

I observed Beth (a pseudonym) in action today. She was speaking on behalf of Charlie (a pseudonym), a young man with a severe head injury as a result of anoxia. Beth related to me that ‘Charlie is really a very energetic guy. He really likes following Sally around the nursing home and visiting other residents.’ Sally, the care supervisor, told me that

‘Charlie is a nuisance and gets in the way’ and prevented her from addressing the bathing needs of residents. ‘I can see this happening—you are very pressed every day, Sally.’ ‘I don’t want to make more work for you,’ Beth said. She said this in a very supportive way. ‘How about letting him visit just two people each day while you go about your own work?’ ‘Can you do this?’ Sally smiled and said yes—‘I can do this.’

Some may see this as an unimportant advocacy intervention. But it was important as can be seen from the context. Sally was at wits end with Charlie who she considered a ‘nag’ who prevented her from getting her work done. Beth was deeply concerned about Charlie’s level of boredom, which she felt would result in his frustration followed by behavioral outbursts. For the care providers Charlie’s behavior required management resulting in unnecessary medication orders serving as a way to enforce a desired regime of acceptable behavior.

As Charlie’s advocate guardian, Beth was working to get him ‘stepped down’ to a lower level of care, and eventually to a supported independent living residential option. The medication management was unnecessary but imminent. Sally’s support was essential. Beth could have relied on some firm warnings to the skilled nursing home administrator but as she explained to me: ‘this isn’t a good move. I need a good relationship with Sally. Sally and I need to work together to better Charlie’s situation’. For me this is a compromise in action.

This one vignette reveals two properties of the compromise: First, personalize both the recipient and the care provider. Then, second, recognize the constraints and limitations of the care provider’s working situation and the nature of the emotional labor. Beth does not want Charlie medicated and Sally is ready to complain about his behavior. As the advocate, Beth recognized Sally as a real person with very real strivings and frustrations. Beth’s own empathic stance went beyond Charlie to include the care provider. For the time being, Beth knew that Charlie was ‘stuck’ in the skilled nursing facility and she could not fully direct the care he was receiving. As a result, Beth was stuck as an advocate and so she relied on her incremental tactics of action.

As I examined my notes involving Beth’s advocacy work I saw how her tactics stood out: work at the lowest level of action (e.g. between Sally and her and Sally and Charlie) and get an immediate feasible resolution to serve Charlie well now and into the near future. Beth practiced what Horton () called his ‘two eyed theory of social change’: keep your eye on the here and now while you anticipate future action. Beth wanted to set the stage for Charlie to move on to a better living situation. The seeds of his future were in the immediate situation. Central to Beth’s relational approach to advocacy was sympathetic regard. Clearly Sally’s constraints and emotional reaction influenced Beth’s tactics for helping Charlie improve his well-being, but only incrementally.

Accentuating strengths and personal qualities of recipients

Henry (a pseudonym), another advocate who served as a guardian of people in a state mental retardation facility, also practiced what I have come to characterize as the advocate’s compromise. He quite frequently personalized the qualities of the people he represented. In all of my six observations of Henry he never characterized his protégés in diagnostic or categorical ways.

When I brought this to his attention, Henry blushed as if I caught him in an action that he felt violated some norm. ‘Oh, I am well versed in those categories but I don’t use them. They do not serve a person well since a stereotypic portrayal doesn’t help others appreciate people who are easily neglected.’ My notes are revealing of Henry’s use of compromise:

I can only characterize Henry as studious. He is always studying people’s records and interacting with them as if to discover something unknown or very special about the people he works with. I see him casually interacting with staff members within the central residence: ‘Molly is a great worker. She loves dusting. Let’s help her dust. She will love that.’ He describes Mike in endearing ways: ‘Mike is wonderful—he helps staff members serve food, clean up, wash up, and prepare for the next meal’.

For Henry it is difficult for someone in power to neglect another less powerful person who is rich in personal qualities others find endearing or rewarding. He characterizes each recipient in terms of the strengths that people in power can relate to. This strengths-based narrative approach—that is, how Henry quite frequently tells compelling stories that captured a person’s strengths—served as the cornerstone of his advocacy practice reflecting what Coles () refers to as the ‘call of stories’.

Ask for more and better, a little at a time

Josephine’s work with homeless women reflected yet another more fundamental quality of the compromise. Here Josephine would communicate to staff members minimal expectations of care for homeless women living in a shelter. In one particular situation Josephine was seeking to prevent the eviction of a woman who Josephine was helping to maintain her stay until she could get into a treatment center for substance use. Joe (her pseudonym nickname) noted to me that ‘you need to calm those people in power. Let them know I am not asking for the world. Just a little help’. Here is an excerpt from my notes:

Joe is a strongly built formerly homeless woman who does not take no for an answer but does not ask for everything. She uses the personalization tactic and points out to people who can release resources to people she represents that they can ‘do a world of good through a little help.’ Once Joe gets something from a provider she asks for more. She says ‘can’t we do one more thing? Just one more thing?’

For me this is the essence of the compromise. The advocate cannot bring about substantial change in this situation but she can ‘ask for more’. In Joe’s advocacy this meant more time, more tolerance, more patience with the homeless woman who was not acting well in the shelter. For the advocates practicing guardianship in public institutions the variant of this (as in Charlie’s situation) was ‘let’s do better. Not everything right now but a little better’.

When the caregiver or supervisor disagreed the comeback was consistent across many advocates in multiple situations. It goes something like this: ‘Oh, I know this is frustrating but we can do a little good here. Let’s do it. Let’s do some more’. Or, ‘let’s do better’. The advocate practicing the compromise will let the powerful actor know (like Beth demonstrated in her own interactions with Sally the care supervisor): ‘we are in this together. Let’s work together’. The effective advocate, the Beths, Henrys and Josephines, sustain the focus on asking for more. Indeed, this is a principal focus of action in which they persist so they can get better situations for the people they represent. Even in the face of conflict or disagreement these advocates come back consistently with requests for ‘a little more’ or ‘a little better’.

Balance conflict and collaboration

This posture on part of the advocate requires collaboration with people who often times do not have as their central focus the well-being of a person whose status is diminished. The advocate’s relentless action for just treatment of their protégés is a reminder of this central focus. But for the pragmatic advocate the achievement of well-being is a product of incremental change as long as the advocate fulfills the best interests of the people they represent.

When I am in the classroom with social work students, many of whom identify as advocates, I often times show a video of failure to thrive among adult offenders who are mentally ill residing in a total institution. The students are aghast when they see this state of dehumanization. I place the speed of the DVD in slow motion so we can discuss the various symptoms of failure to thrive in an adult male. We then proceed into the remainder of the video and we analyze in slow motion format the conditions that bring about such mistreatment.

In the following session, we then view the DVD again and we pinpoint advocacy opportunities foregone because of the era in which the video was produced. Advocacy was not a central feature of total institutions in the early 1960s. Students become well aware of the basic necessities forming well-being from which the compromise can only proceed if those necessities have been fulfilled. The compromise will fail in those facilities in which there is substantial infringement of basic human rights and dehumanization of inmates ensues, what Blatt () called ‘souls in extremis’ because of the extreme level of mistreatment-dependent people experienced in total institutions.

In advancing a person’s well-being, best interests’ advocacy can link with person-centered advocacy. But while advocates must be collaborative they must also insist on person-centered support of the people they represent. They cannot, however, set someone up for subsequent neglect or abuse when that insistence only escalates resentment among those who oversee the care or regulation of dependent individuals. This ethical challenge really is yet another expression of advocacy practice. I refer to it as the ‘advocate’s dilemma’. It means that there is risk inherent in the advocate asking for more no matter how limited and then leaving the situation only to expose a dependent individual to the discretion of a disaffected care provider.

The tension between the advocate’s dilemma and the compromise is why an advocate seeks to bring about a collaborative approach in those settings populated by people with diminished status, the extreme form of which are souls in extremis. Like other human service professionals the advocate must distribute their time and attention across a diverse case load and multiple facilities. Advocates are the quintessential street level bureaucrats Lipsky (1980) so ably describes (Moxley ). The street-level bureaucrat wants to bring good policy and justice to bear in challenging situations, but with limited resources the ideal is hard to realize.

Like street-level bureaucrats advocates in social work must manage caseloads spread across multiple settings. They must distribute their cognition and emotion, which can then limit their vigilance and oversight in any particular situation. Fostering positive relationships with care givers and supervisors may be a way advocates cope with their own limited capacities for surveillance of those situations in which risk prevails.

Conclusion: Advocacy Paradigm in a Policy Context

The advocate’s compromise emerges from my experience from the ethical dilemma: ‘Do no harm’ but do improve a person’s well-being in situations that can compromise it. And so the advocate respects the potential for congregate care settings or other total care situations to create very real risks for people whose status and perhaps functioning are both diminished in substantial ways.

That the advocate’s compromise is a way for institutions to function adequately may be a very real criticism of any form of advocacy based on a reactive paradigm. The advocate makes the total institution work smoothly. In a legal sense, the advocate can mitigate administrative risk or inadvertently produce bad practice. The advocate enables the institution to fall short of an ideal. Ultimately, the advocate enables the institution to balance the cost and requirements of care within a framework of what is deemed possible and feasible.

Paradoxically, these unintentional organizational benefits very well may be actual negative consequences of advocacy, particularly when it is not part of a grander public strategy to shift paradigms from reactive to proactive stances. The reactive paradigm is inherent to American social welfare. It likely imprints itself on every form of social work practice.

Advocacy in American social welfare is inextricably linked to how society conceives of human need and to how it chooses to manage that need. Best interests’ advocacy and enabling advocacy may fade in significance as people have access to those policies, benefits, and opportunities supporting their well-being across the life course. When this occurs perhaps both the advocate’s dilemma and the corresponding compromise will fade into the past and join other artifacts of American social welfare as curious historical anomalies indicative of foregone eras in which human management trumped human development.

Health Care Policy and Politics

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This article explores the policy making process as applied to the study of health care. The policy process is outlined and defined and then considered within the context of the larger political environment. The unique attributes of health care are identified and discussed in terms of how they contribute to the complexity of healthcare policy-making.

Broadly defined public policy is the recognition of a problem and the subsequent actions of the government to solve the problem. Solutions to the problem, in the form of laws and regulations, are enacted in the legislative branch of government. The laws are put into effect, i.e. implemented, by the executive branch. The laws can be challenged, reviewed, or modified by the judicial branch. This series of steps from problem recognition to solution to implementation is known as the policy process and can occur at any level of government — federal, state or local.

Health policy is made within every branch of government and at every level of government. At the federal level, health policy addresses issues that affect or can potentially affect every citizen in the nation. Examples include Medicare, which provides health care for every citizen age 65 and over. At the state level, regulatory policies are issued that cover licensure of health care providers and healthcare institutions. At the local level, most of the policies impact public health such as food inspections at restaurants and other public places, sanitation, and immunization. Indoor smoking bans are another example of public health policies that have been enacted. In some states, Ohio for example, local health departments and municipalities have been so successful at implementing indoor smoking bans that the policy was adopted at the state level.

The policy process does not take place in isolation. The larger environment within which the policy process takes place includes biological, cultural, economic, demographic, ethical, and technological influences (Longest, 1994). Within this larger arena are policy communities who exert their power on each phase of the policy process: Stakeholders who are committed to a particular policy solution; competitors who offer alternative solutions; and opponents who oppose specific solutions or prefer the status quo.

The Policy Process

Agenda Setting

Agenda setting, the first stage of the policy process, refers to the when, how, and why an issue comes to the attention of policymakers. John Kingdon in his book, Agenda, Alternatives and Public Policies (1984) describes agenda setting as three concurrent streams of activities: Problems, policies, and politics.

In the problem stream, multiple problems are free-floating, bump and collide, and compete for attention. The problems can be identified in multiple ways; the occurrence of a catastrophic event, economic concerns, or findings in research studies. In health care, for example, problems could be the spread of contagious disease such as HIV/AIDS, a shortage of health providers, or public health reports documenting regional incidence or prevalence of cancer linked to environmental factors. Most recently, health care problems include the rising costs of health care, lack of access to health insurance (in the fall of 2013 there were forty-eight million uninsured Americans), and the lack of access to health services due to geography, e.g. rural areas and inner cities.

The second stream, policy, is the flow of alternative solutions to the problems. There is not necessarily a one to one connection between any given problem and a potential policy solution. Usually, there are multiple solutions for any given issue. Sometimes there are solutions without any corresponding issue. New technologies are an example of this. A technology may exist without an identified suitable application. In health care, the problem of rising costs has been problematic due to the complexity of health delivery services, insurance availability, and increasing technological advances. Some propose that the U.S. adopt a single payer solution where the government is the single payer. The model for this solution is the British Health Service. Managed competition is another solution proposed by Alain Enthoven. In this proposed solution, the federal government sets out the minimum level of services and benefits that health plans will be required to offer. Large networks offering vertically integrated services would then compete to provide them to large groups of consumers. This plan blends a market cost-control approach with a consumer-driven health care delivery model (Longest, 1994).

The third stream is politics or the political environment. Politicians, interests groups, the public, the media, public opinion, and other players in the political arena are in this stream. The healthcare political stream includes patients, providers, the American Medical Association, the American Hospital Association, and other interest groups, businesses, managed care organizations, etc. The politics stream also includes events and issues competing for the public’s attention as well as the politicians’ attention. For example, in the 2004 presidential candidates’ platforms concerning health care, which had been a prominent issue during previous elections, were in a secondary position. In 2012, however, health care reform was again a major issue as President Barack Obama ran for reelection.

Green-Pederson and Wilkerson further explored this idea of attention in a 2006 article comparing agenda-setting attributes in health policy in Denmark and the United States. Their hypothesis was that problems on an agenda may have particular attributes that cause the problems to become the particular focus of political attention. They argue that the issue of healthcare is a particularly salient issue with politicians because no politician wants to be viewed as “opposing health care or access to health care” (Green-Pederson & Wilkerson 2006, p.1041). In addition, they found that healthcare innovation has raised the public’s expectations for receiving the latest health care technologies and treatments. Innovation and technological advances are leading contributors to rising health costs, which in turn, puts pressure on politicians to allocate greater resources for healthcare. Although the structure of health care systems and service delivery is very different in Denmark, which has government paid healthcare, and the United States, which has both public and private healthcare, the political attention that healthcare receives is similar.

Although a particular problem or issue may be the focus of political attention, it may not have yet reached the government’s decision agenda. According to Kingdon, an issue reaches the policy decision agenda when a connection can be made that links a problem with a proposed solution in the right moment of political opportunity. Kingdon calls this opportunity a policy window of opportunity.

Key to opening the window of opportunity is a policy entrepreneur, an individual or an interest group or association that shapes problem definitions (problem stream), finds links to proposed solutions (policy stream), and identifies political opportunists who are receptive to the proposed solutions (politics stream). In other words, policy entrepreneurs make the connections that subsequently open the policy window and propel the proposed policy solution onto the government’s decision agenda, i.e. the formulation phase of policy-making.

Formulation

Policy formulation is the point in the policy process where legislation occurs. The proposed solution is first written in the form of a draft bill (or law) and then introduced by a bill sponsor, a member of either the upper or lower house of the legislative body. The bill is then referred to the appropriate committee for deliberation. All work in legislative bodies is accomplished through committees. Each committee has a particular area of responsibility. The chart below shows the major committees and subcommittees in the U.S. Congress that address health policy issues.

Senate Committees House of Representative Committees Finance Committee: Social Security, Maternal and Child Health, Medicare and Medicaid, Subcommittee on Medicare and Long-Term Care Ways and Means Committee: Subcommittee on Health, Social Security, Medicare Part A Labor and Human Resources Committee: Public Health Service, Food and Drug Administration, National Science Foundation Energy and Commerce Committee: Subcommittee on Health and the Environment, Public Health Service, Maternal and Child Health, Medicare Part B, Medicaid Appropriations Committee: Subcommittee on Labor, Health and Human Services, Education and Related Agencies; Indian Health Service, Subcommittee on Veteran’s Affairs Appropriations Committee: Subcommittee on Labor, Health and Human Services, Education and Related Agencies, Indian Health, Subcommittee on Veteran’s Affairs Veteran’s Affairs Veteran’s Affairs

Committees hold hearings to obtain information about a bill by soliciting testimony of subject matter experts, persons who are most likely to be affected by the passage of the bill, and others. Bills are then ‘marked up,’ that is, there are additions, deletions or corrections made to the original bill. The bill is then reported out of committee and sent to the floor to be voted on by the full house or senate. Once passed by the chamber originating the bill, it is then sent to the other chamber where it is again sent to committee and then to the floor for a vote. After passage by both houses, the bill will be sent to a conference committee where any discrepancies in the bill as passed by each chamber are negotiated and final language is determined.

The final step in the formulation phase occurs when the bill is sent to the executive (president or governor) to be signed into law. If the executive disagrees with the bill, he or she will veto the bill and send it back to the legislative body. The legislative body can override the veto, in Congress and in most states, by a two-thirds majority vote. Once the bill is passed it is sent to the executive branch for implementation.

Implementation

The implementation phase occurs in the executive branch of government, also known as the bureaucracy. At the federal level, almost all bills pertaining to health are administered by the Department of Health and Human Services (DHHS). This department has numerous divisions and agencies reflecting special expertise or specific segments of the population. Examples of DHHS agencies include (but are not limited to), the Administration on Aging, the Administration on Children and Family, the Food and Drug Administration, the Centers for Medicare and Medicaid, and the Public Health Service which includes the National Institutes of Health, the research arm of federal health programs. Congress provides appropriations to each agency to carry out the laws that have been delegated to it. Congressional committees also monitor the implementation progress of each law.

One of the most important tasks an agency completes when it receives a new law is rule-making. When a piece of legislation is finally passed and enacted into law by signature, it usually is not very specific. In fact, the language may be deliberately vague as a result of negotiation and compromise during the formulation phase. During the rule-making process, agencies make explicit rules and regulations regarding how the law is to be implemented.

Policy Evaluation

As new policies are carried out by the executive branch during implementation there are generally procedures put in place to monitor and evaluate the effect of the program and its impact. Invariably there are things that go wrong, unforeseen events that occur, and occasionally negative outcomes associated with policy implementation. Sometimes these glitches can be fixed by modifying rules that were originally promulgated and sometimes amendments to the original legislation have to be made. Every major piece of legislation comes up for re-authorization at defined periods. For example, the Social Security Act has been amended over 20 times since it was originally passed in 1935. Among the changes and amendments were the addition of Medicare, the addition of rural health services, changes in reimbursement policy from fee for service to prospective payment, and the addition of prescription drug coverage, Medicare Part D. These examples are only those affecting health care sections of the Social Security Act. Others of the Act include Social Security pensions, disability, and social services.

The Political Environment of Health Care

The policy process is a useful model to help us understand the underlying logic of how a solution to a problem is transformed into public policy. Its simplicity, however, belies the political reality of the world within which health policy occurs. This world is dynamic, messy, generally chaotic, and impacts every step of the policy process. Political forces are greater and more complex than who holds office; which party dominates Congress or the state legislature; which interest group has the most influence; or which political action committee has the most money. In every policy issue there are dimensions of power and influence beyond the obvious interest groups, electoral and party politics. In health care, one of these dimensions is information and trust.

Health economists and scholars in medical economics debate the issue of information asymmetry and the degree to which it influences the healthcare market in the sense of a classically competitive market model (Haas-Wilson 2001, Robinson 2001, Arrow 2001). A classically competitive market assumes that buyers and sellers in a market have equal information, or have equal access to information, that will be used in making market transactions. Information asymmetry occurs when the information held by buyers and sellers is not equal. In the healthcare market, physicians (the sellers) have traditionally had exclusive access to the information needed to make treatment decisions for their patients (the buyers). Lacking information, patients had to trust their physician to diagnose and recommend the best treatment option. This trust formed the power base from which physicians, in the guise of the American Medical Association, were able to maintain their exclusive control of medical information and in turn control the healthcare market (Starr, 1982).

Mark Peterson in a 2001 article in the Journal of Health Politics, Policy and Law examined how the trust in an individual physician-patient relationship has been transformed into a collective trust that goes well beyond the scope of medical practice.

“What undergirds our faith in our individual physicians thus empowers them collectively in issues that are as removed from explicit medical practice as taxation allocative fairness, public administration and political accountability” (pg 1148).

Peterson observes that the collective base of physician power began to erode with the rise of issues such as access to care, insurance coverage, and increasing costs. In addition, new groups of health experts were forming. These experts included researchers in policy think tanks, academics, private foundations, non-profit organizations, and consumer driven groups such Families USA and AARP. Research findings and reports from the front lines of health care delivery challenged the information exclusivity of the AMA and others representing organized medicine.

Another dimension adding to the complexity of health care policy is the discrepancy in the public’s perception of the health care system versus what they think of their own health care experience. In a 2006 public opinion survey on American health priorities, Blendon et.al. (2006) found that, overall, people want change in the healthcare system in the United States but they don’t want any change to their own healthcare situation. The matter of public opinion and health care became a much bigger issue between 2010 and 2013, with the Patient Protection and Affordable Care Act (also known as the Affordable Care Act or Obamacare) that was passed under President Obama. The act faced considerable resistance in Congress and from conservative bodies, and was a highly contentious and controversial subject among politicians, the media, and the public. Indeed, public perceptions and misinformation resulted in mixed (and occasionally vitriolic) reactions to the health care reform, which will officially go into effect on January 1, 2014.

Patient Protection and Affordable Care Act

In 2010 President Obama signed the Affordable Care Act into law. The act will require that Americans be insured (they must have coverage or else face a penalty) and some citizens will get financial assistance if necessary, whether through a subsidy or Medicaid; the act also will change the qualifications for Medicare, affect premiums, and prevent insurers from denying coverage for preexisting conditions, among many other provisions. The goal of the Affordable Care Act is to lower the number of uninsured by reducing costs and expanding coverage — it is expected to reduce healthcare inflation and lower government spending for Medicare and Medicaid. Notably, the act also includes insurance exchanges and a mandate. Opponents of the act challenged its constitutionality, but in 2012 the US Supreme Court ruled that the mandate was constitutional.

Conclusion

Health care policy and politics is a dynamic and complex field of study. It is also a comparatively young field of study. Up until the federal government assumed a prominent role in health care finance, the practice of medicine and health care delivery was mostly a private concern between doctors and patients, or was at the most a local or regional concern centering on hospitals and local clinics. Prior to Medicare, the federal government was mainly concerned with public health issues of populations and contagious disease. Today, no one is unaffected by changes in health care systems. The drive to control costs and provide equal and equitable access to health care is creating organizational changes from the local doctor’s office to regional health systems, to state and federal governments. The impacts of these changes will be felt by individuals, health care providers of all types, health care institutions, corporations, and governments.

Terms & Concepts

Health Care Delivery: The activity of providing or supplying health care to individuals or groups of individuals.

Health Policy: The method decided upon and used to deliver health care to individuals or groups of individuals.

Information Asymmetry: When buyers and sellers in a market do not have equal access to the same information.

Policy: Recognition of a problem and the subsequent actions of the government to solve the problem.

Policy-Process: The sequence of activities that occur to move a proposed solution to an identified problem from the government agenda to formulation to implementation to modification.

Rule-Making: The actions of a government agency to make explicit rules and directions in order to implement a new piece of legislation.

Bibliography

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Blendon, R.J., Hunt, K, Benson, J.M., Fleischfresser, C., & Buhr,T. (2006). Understanding the American public’s health priorities: A 2006 perspective. Health Affairs, 25, 508-515. Retrieved October 22, 2007, from EBSCO Online Database Academic Search Premier. http://search.ebscohost.com.lopes.idm.oclc.org/login.aspx?direct=true&db=aph&AN=25072625&site=ehost-live

Clarke, S., & French, S. (2013). Healthcare reform in 2013: Enduring and universal challenges. Nursing Management, 44(3), 45-47. Retrieved December 3, 2013 from EBSCO Online Database Business Source Premier. http://search.ebscohost.com.lopes.idm.oclc.org/login.aspx?direct=true&db=buh&AN=86152623

Enthoven, A.C. (2004). Market forces and efficient health care systems. Health Affairs, 23(2), 25-27. Retrieved August 31, 2007, from EBSCO Online Database Academic Search Premier. http://search.ebscohost.com.lopes.idm.oclc.org/login.aspx?direct=true&db=aph&AN=13679706&site=ehost-live

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Green-Pederson, C. & Wilkerson, J. (2006). How agenda-setting attributes shape politics: Basic dilemmas, problem attention and health politics developments in Denmark and the US. Journal of European Public Policy, 13(7), 1039-1052. Retrieved October 18, 2007, from EBSCO Online Database Academic Search Premier. http://search.ebscohost.com.lopes.idm.oclc.org/login.aspx?direct=true&db=aph&AN=22483139&site=ehost-live

Haas-Wilson, D. (2001). Arrow and the information market failure in health care: The changing content. Journal of Health Politics, Policy & Law, 26(5), 1031-1045. Retrieved August 22, 2007, from EBSCO Online Database Academic Search Premier. http://search.ebscohost.com.lopes.idm.oclc.org/login.aspx?direct=true&db=aph&AN=5689222&site=ehost-live

Jacobs, L. & Illuzi, M. (2004). In the shadow of 9/11: Health care reform in the 2004 presidential election. The Journal of Law, Medicine, and Ethics, 32(3), 454-460. Retreived October 15, 2007, from EBSCO Online Database Academic Search Premier. http://search.ebscohost.com.lopes.idm.oclc.org/login.aspx?direct=true&db=aph&AN=14841798&site=ehost-live

Kingdon, J.W. (1984). Agenda, alternatives, and public policies. Boston: Little, Brown and Company.

Longest, B.B. Jr. (1994). Health policymaking in the United States. Ann Arbor, MI: AUPHA Press/Health Administration Press.

Porter, M. E., & Lee, T. H. (2013). The strategy that will fix health care. Harvard Business Review, 91(10), 50-70. Retrieved December 3, 2013 from EBSCO Online Database Business Source Premier. http://search.ebscohost.com.lopes.idm.oclc.org/login.aspx?direct=true&db=buh&AN=90325428

Robinson, J.C. (2001). The end of asymmetric information. Journal of Health Politics, Policy & Law, 26(5), 1045-1054 Retrieved September 27, 2007, from EBSCO Online Database Academic Search Premier. http://search.ebscohost.com.lopes.idm.oclc.org/login.aspx?direct=true&db=aph&AN=5689223&site=ehost-live

Starr, Paul. (1982). The social transformation of American medicine. New York, NY: Basic Books, Inc.

Can Health Care Reform End Stigma Toward Mental Illness?

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Pages 95-110 | Published online: 04 May 2016

In this article

This article addresses the destigmatization of mental health through health care reform by incorporating antistigma efforts—a destaining of mental illness—through prevention and early intervention in community-based programs that would be mandated and funded through the auspices of Patient Protection and the Affordable Care Act (ACA). Mental health care policies under the ACA and the Mental Health Parity Act are briefly described, following a definition of mental health stigma and its impacts. Recommendations for statutory mandates in stigma reduction at the community and federal levels and guidelines for mental health/behavioral health providers form the article’s conclusion.

KEYWORDS: 

Impact of stigma

Stigmatization is defined as an individual or a group harboring negative feelings, attitudes and behaviors toward others who are, typically, socially constructed in negative ways (Overton & Medina, ). Five critical components converge in the process or path toward stigmatization—labeling, stereotyping, separating “us” from “them,” loss of social status with resultant discrimination and, last, an imbalance of power. This final element serves as both cause and effect of stigmatization in that the instigators of stigma have power over the targets of those stigmatized sufficient to stain them, while those thus stigmatized suffer further losses of their own power. This spiral further impairs an individual or group in a host of life’s opportunities, including education, career, health, and well-being, as the process continues to direct social attention to taint those individuals by touting their “undesirable social characteristics;” whereby the stigmatized, then, stand ready to “accept” blame for their own unacceptability (Rosenberg, Rosenberg, Huyen, & Klein, , p. 74). The authors add that some stigmatized by the label mentally ill suffer “double-whammies” when they also have a second stigmatized label (e.g., sexual minority). Rosenberg et al. cited a study of mental health and suicidality among sexual minority or LGBT people that found that self-acceptance—that is, overcoming a dual stigma—made for a strong predictor of mental health (p. 73).

Those who practice in the field of mental health do not stand immune to reinforcing the process of stigmatization of their clients. Research findings with regard to mental health professionals and stigma indicated that even well-trained professionals in the mental health disciplines subscribe to societal stereotypes about mental illness (Corrigan, ). Furthermore, stigma has been linked to increasing barriers for health care access and poor treatment outcomes (Simmons, Nelson, & Neal, ). Additionally, fewer than 40% of those with serious mental illness seek and obtain mental health services (Martin, Pescosolida, & Tuch, ).

Unfortunately, there is currently nothing in the language of the Affordable Care Act (ACA) that speaks to the issue of stigma, either in mental health or in other areas of health (e.g., HIV/AIDS). Under the nine titles that outline the components of health care reform, there is one that comes close to addressing stigma, although indirectly—Title II, Health Care Workforce (The Patient Protection and Affordable Care Act detailed summary, Citationn.d.). This title consists of training and education for behavioral health care providers (e.g., social workers) in mental health and cultural competency in working with diverse populations, including those suffering from mental illness. In an effort to reduce health inequities in diverse communities, the U.S. Department of Health and Human Services (HHS) recently revised the National Standards for Culturally and Linguistically Appropriate Services (CLAS) in Health (“HHS launches revised standards,” ), which is a step in the right direction; however, this is only a partial solution. The original CLAS standards developed in 2000 by the HHS Office of Minority Health had to do with providing a blueprint for “culturally and linguistically appropriate health services,” and the expansion in 2013 aimed:

To have a broader reach to address the importance of cultural and linguistic competency at every point of contact throughout the health care and health services continuum. Specifically, the Standards’ conceptualization of culture, audience, health, and recipients were expanded (U.S. Department of Health and Human Services, ).

For many, to walk that walk means to walk thus stained. False assumptions and negative stereotypes of those in our society who suffer from mental illness result in multiple barriers and discrimination in various realms of life. Stigma, whether it is structurally embedded in society and its institutions or self-imposed by an individual, has been considered a social determinant of health(Hatzenbuehler, Phelan, & Link, ).Johnstone () noted that “those individuals suffering from mental illness are among the most stigmatized, discriminated against, marginalized, disadvantaged and vulnerable members of our society”(p. 200). Holley, Stromwall, and Bashor () proposed the critical anti-oppression paradigm to understanding and addressing the multilayered and systemic oppressive attitudes and practices with regard to mental health stigma; similar to other critical theories (i.e., critical race theory and feminist theory), the central components are oppression and privilege and how these factors impact those suffering from mental illness and are manifested at all levels (e.g., institutional, cultural, and individual).

There are sociohistorical and political roots of stigma that we cannot readily dismiss and that serve as the backdrop of oppressive practices regarding the mentally ill, at least in the Western world. Andrew Scull (), referencing French sociologist Emile Durkheim on the social (and institutional) responses (i.e., means of control) toward those suffering from mental illness having varied over time and context, remarked:

Lunacy, insanity, psychosis, mental illness—whatever term we prefer, its referents are disturbances of reason, the passions, and human action that frighten, create chaos, and yet sometimes muse…. Its existence has given birth to elaborate sets of social institutions and systems of knowledge that seek to comprehend, to contain, to manage, and to dispose of powerful symbolic and practical challenges madness poses to the social fabric and to very possibly of social order (p. 3).

Scull noted that the definitions and boundaries of what is considered mental illness and the types (i.e., classifications) remain “permeable and contested” (p. 5), even within medical sciences. He added, “No x-rays, no PET scans, no laboratory tests that unambiguously pronounce that one is sane, this one mad,” despite the many iterations of Diagnostic and Statistical Manual of Mental Disorders (DSM), now in its fifth edition and fraught with controversy in medical and nonmedical establishments (p. 4).

Joseph (), in his criticism of the biomedical model of psychiatry, spoke about the historical medicalization of social problems and oppressive practices that Ervin Goffman (sociologist), Thomas S. Szaz (psychiatrist and psychoanalyst) and Michael P. Foucault (French philosopher) and other illustrious individuals elucidated in the 1960s and 1970s:

Psychiatric interventions have a long history of using biomedical diagnoses and treatments to intervene in social issues (class, ability, race, gender, sexuality) to control for the dominantly desired social behavior (against crime and addiction and in favor of heterosexuality) or to advance colonial projects (aboriginal land appropriation, slavery, indentureship, etc.) (Joseph, , p. 266).

Scull went on to offer that biomedical interventions (e.g., lobotomies [psychosurgery], electroconvulsive therapy [ECT] and institutionalization, aka “insane asylums”) served only to further alienate and oppress the social undesirables and, in the first half of the 20th century, the U.S. Supreme Court, under the rubric of medical science, approved involuntary sterilization of the mentally ill that later Hitler took to the next level, under the domain of eugenics (i.e., science of good breeding), which resulted in “more than 70,000 [mentally ill] gassed in just 20 months beginning in January 1940” (Scull, , p. 6). Murder became the “solution” in Nazi extermination policies under the 1933 German law, the Law for the Prevention of Genetically Defective Progeny, which received support from German scientists (geneticists and eugenicists) as the Nazi euthanasia campaign (Weiss & DeBraber, , p. 572).

Obviously, the Western world has come a long way since the Nazi atrocities. As well as the concept of the “schizophrenogenic mother” as espoused by Bateson and colleagues as the etiology of schizophrenia (Bateson, Jackson, Haley, & Weakland, ) based on early socialization, communication theories and family dynamics, de-institutionalization and involuntary hospitalization commitment statutes have existed since the 1970s in every state of the nation (Munetz, Galon, & Frese, ). Still, ECT is being performed today as the most effective treatment for individuals suffering from medication-resistant depression (see Joseph, ). One of the contemporary arguments in the United States, according to Munetz et al., is the ethics of mandatory community outpatient treatment for “revolving-door patients” (p. 173), which points to the societal and medical communities’ unresolved ambivalence and dilemma with regard to treatment of the severely mentally ill.

At the same time, the mental health industry itself suffers from stigmatization. Significantly, tragic events like the Sandy Hook and Columbine school shootings stand emblematic in the minds of the public as a failure by mental health professionals to identify, let alone treat, severely disturbed and violent individuals who, by the magnitude of the events they perform, stigmatize the majority of sufferers who are not violent. The public blames the “crazies” and at the same time those whom they trusted to prevent these events. A lead editorial in The Wall Street Journal about House Representative Murphy’s legislative proposal to overhaul federal mental health policy declared, “Severe mental illness is the common link among the recent shootings [due to] the systematic dysfunction in a mental-health system that fails the sickest” (“A mental-health overhaul,” , p. A12).

Anger toward and mistrust of the mental health industry also spring from small events enacted daily in every neighborhood in America. For example, the public have not remained unaware of the medicalization of childhood behavior. Many do not believe that Attention deficit hyperactivity disorder (ADHD) actually exists, and although we do, it remains easy to see that the public views our professionals as fools who simply cannot accept childish boisterousness and boredom as acts of normalcy and childhood development. Even when people do subscribe to the soundness of mental health screening, “small events” can prove problematic; a simple, regularly scheduled doctor’s appointment often serves as the point of diagnosis when doctor and patient can actually talk to one another. Seigel (), the Medical Director at New York University’s Langone Medical Center, laments that “taking an extensive mental-health history [‘for the severity of a patient’s depression’] doesn’t fit squarely into the 10-minute visit authorized by insurance, along with mandatory computer documentation, insurance verifications and appointment scheduling” (p. A11). His complaint: The ACA has turned the small into the mammoth, e.g., the ACA has generated more than 4,000 forms!

The various political, practical, and economic handicapping conditions that surround the ACA add another layer of stigma to the already over-stigmatized individuals with mental illness and to those who would help them. Thus far, the public debate over the unveiling of the act in late 2013 has focused on the failed website, on the resulting negative public relations, and on the law’s enormous financial costs. America can howl at the act and decry its affordability and waits to examine its levels of care. It will. In time. In a short time. But for the time being, issues related to reduction of stigma remain mired in the mud of the law’s own stigma.

Mental health care policies

The ACA was signed into a law in 2010, with the aim of providing high-quality and accessible health care insurance while containing health care costs (The Patient Protection and Affordable Care Act detailed summary, Citationn.d.). As of this writing, more than 16 million people in the United States have gained health insurance coverage under the ACA, and it has been touted as the “most significant health care reform since Medicare and Medicaid” (“How patient care has changed,” , para. 1). In 2014, the ACA included provisions for the coverage of the 10 Essential Health Benefits, including mental health and substance abuse (Pittman, ). The Mental Health Parity and Addiction Equity Act (MHPAEA), authored in 2008 by former Representative Patrick Kennedy, states that health insurance plans must cover the treatment of mental illness or drug/alcohol abuse at the same rate as coverage for other medical conditions. In 2010, “the interim final rule” spelled out insurance-quantifiable limits, such as out-of-pocket costs and caps on mental health care; however, the rule failed to address the question of “which mental health services are comparable to medical care” (Pittman, ). The Obama administration and U.S. Department of Health and Human Services (HHS) are due to issue the final rules for the Parity Act so that the law can be fully implemented, putting mental health coverage on equal terms with medical/surgical benefits. According to Kennedy, “the expanded access the Affordable Care Act provides, together with the equal coverage granted from the Parity Act, will help overcome the stigma and barriers to mental health treatment” (One Mind, Citationn.d.). Given the many delays in the activation of the act’s various components, time would appear to be on one’s side in the macro efforts to influence actions related to stigma and treatment. Herein lies the question: Will the converging of these health care reform programs actually reduce stigma and improve health inequities for those suffering from mental illness?

Community-based response: A lost cause?

The Substance Abuse Mental Health Services Administration (SAMHSA, 2013) released a mental health and substance abuse education program to help community members plan and organize Community Conversations about Mental Health. This initiative was meant to destigmatize mental health by introducing it as a public health issue, as the U.S. Surgeon General had previously recommended. It addresses attitudes and belief systems as well as the social, economic, and human costs of unmet mental health needs.

Recent research has gone to great lengths to illustrate the fact that widespread stigma associated with mental illness carries with it the inevitable result of preventing people with psychiatric disabilities from taking full advantage of important opportunities that are essential for achieving significant life goals. Corrigan and Gelb () identified the two greatest concerns of individuals suffering with serious mental illness as being obtaining meaningful and competitive employment as well as finding independent living arrangements within safe environments. The authors identified and examined three programs (i.e., StigmaBusters, Elimination of Barriers Initiative, and In Our Own Voice), whose overall goal is reducing stigma through protest, education, and contact as having promising findings (Corrigan & Gelb, ).

The ACA proposed changes in the reimbursement for various behavioral health services that had previously not been considered reimbursable, which should lead to an increase in the usage of programs aimed toward greater emphasis on social support, increased comprehensive care management, transitional care, and greater use of various evidence-based interventions. An example of this shift can be seen in an increase in the support of employment programs aimed at encouraging even the most severely disabled clients to seek meaningful employment. Studies have successfully shown that clients who hold competitive jobs for a sustained period of time have displayed improved self-esteem and greater abilities to manage their symptoms properly (Bond, ). Dixon and colleagues () noted that “the combination of assertive community treatment, family psychoeducation, and supported employment has been associated with better competitive employment outcomes than conventional vocational rehabilitation.…”

The ACA established provisions for a continued and ongoing support system available to clients through the supported employment programs, with the goal of helping those suffering with severe mental illness to maintain meaningful employment as well as gain the ability to transition to new positions in the future (Mueser et al., 2014). It becomes clear to anyone who examines the policies and impacts of these programs that they not only aid in the process of destigmatization of mental illness that clients might feel directly, the programs also have the potential to impact society as a whole. These efforts, through time, can aid in the deconstruction of current stigma commonly held by the public through continued positive contact with individuals suffering from mental illness.

Although such initiatives appear to be well researched and stakeholder-informed campaigns, a serious limitation for many of these programs is that they are based on idealistic assumptions that communities will spontaneously take it upon themselves to initiate destigmatizing programming. Moreover, these types of campaigns are aspirational at best, because without federal funding, infrastructure and coordination to launch programmatic efforts, any such efforts will fall on deaf ears. Antistigma projects need to be long-term investments that will foster collaboration in capacity building at many levels (e.g., federal and state governments, employers, schools, families, and individuals) that can be sustained through the ACA. The outcomes of such endeavors may take years to evaluate because stigma is not something that is diminished overnight. (See stigma-reduction projects funded and evaluated by Prop 63, the California Mental Health Services Act in Clark et al., .) There are lofty ideals in the rhetoric of Healthy People 2020 and in Transforming Mental Health Care in America, (New Freedom Commission on Mental Health, HHS); however, without monetary backing, policy and structural mandates and support for antistigma programs, good intentions will carry us only so far. Thus, without a strategic plan, with specific funding allocation and support under the ACA, efforts to reduce stigma will be insufficient and, thus, health care reform, in its current format, will be inadequate to ensure greater access to mental health services by individuals with mental illness.

President Obama could help in a major way, even in his final year in office. After all, it was he, heading into his first election as president, who capitalized on the voters’ needs for a “parasocial relationship [with their leaders], that is, in a relationship that promises intimacy at a distance … that relies more upon an estheticization of the politician and upon style-bound forms of identification.…” (Gross, , p. 4). He has not mastered the fireside chat utilized so effectively by Franklin D. Roosevelt, but people generally tend to like him, even as they decry his policies. And he continues to “evolve.” Consider his evolving stance on gay marriage before his re-election and, in a similar fashion, in his 2014 State of the Union Address, when he morphed “upward mobility” into the new term “ladder of opportunity.” We salute these evolutions in both content and style, and we call here for the Executive to help redefine and re-language mental illness in a vast effort to destigmatize the condition and those living with it.

In his penultimate year of office, President Obama has already moved in the direction of funding doctor-patient dialogue; that is, medicalizing patient-centric talk as a form of treatment that is as helpful and necessary as bio-based interventions. Upon advice from the Institute of Medicine and from the Centers for Medicare and Medical Services, the federal government in 2015 proposed payment to Medicare providers for end-of-life counseling for both beneficiaries and their families (Armour & Radnofsky, ). Death and dying have long suffered as stigma-laden topics in and of themselves, which enlivens a call for coverage of clinical conversations about other mental health stigmas. Funding a “bit of talk” sounds like such a small and easily attainable addition. However, it is not.

The Centers for Medicare and Medical Services, as mentioned above, projects that the numbers of those served by Medicare and Medicaid will rise from 107 million people in 2013 to 135 million in 2018, and that concurrently private health care insurance premiums will rise by 30% by 2016, while 55% of physicians in one major city now refuse to take on new Medicaid patients (Atlas, ). Scott Atlas of Stanford University’s Hoover Institute has called for “eliminating unnecessary coverage mandates that have ballooned under ObamaCare,” and he cites and deplores the 2271 state mandates for new coverages. In view of this current climate, the helping professions might well doubt the level of welcome we can seek for additional interventions for stigma reduction.

Profession-based response

The helping professions continue to try to re-language mental illness, but a public weary of governmental “NewSpeak” isn’t buying it. In a media-saturated world where the Department of Homeland Security terms terrorism “man-caused disaster”—so transparent in its manipulative cover-up—the public recoils at our own “NewSpeak”—“consumers of mental health services.” Noble in the framers’ intent to depersonalize the illness by linking disorders to the product which is therapy (and pharmaceuticals) rather than to shortcomings within the individual sufferer, this phrase itself suffers a backlash—“it’s just crazy talk!” At best, the term consumers of mental health services softens the image of the services, which stands more kindly than shrink, a term borne of the scarier headshrinker. The consumers, on the other hand, continue to carry the image of that-which-dares-not-speak-its-name, a de-languaging and narrative that induce fear, stigma, and marginalization.

The helping professions would stand wise to learn from neighboring successes within our field. The terms Persons with AIDS and Persons with Disability have worked wonders in destigmatization. They focus, first of all, on persons and thereby anchor the referent—those “with”—to the human race. These “persons” are among us, part of us, they are us! That they are with something rather than are something reduces the negative master status so often assigned to those persons. This framing enables others to imagine those “persons-with” as being “with” many other things—e.g., intimate partners, aspirations, headaches, bad-hair days. Might not Persons with Mental Illness thus normalize a bit? Thus, language labels are not neutral, they are about power, as in dominant social discourses à la Foucault and our “complicity with oppression” (Fook, , p. 75). Further, Johnstone () posits that those individuals suffering from mental illness and the associated stigma and discrimination that result from the stigmatization require a “substantive moral response, not merely a social or political response” (p. 203–204). However, such a response is not easily accomplished, as Fook and Napier () noted; we are all part of the social fabric (i.e., context, structure, and culture).

As pointed out in a New York Times article, “When Doctors Discriminate,” the process of stigmatization occurs in the medical health field as well (Garey, ). Garey provides multiple accounts of physicians who have misdiagnosed or even refused to treat clients with mental health disorders. This may quite possibly be the most dangerous form of stigmatization, resulting in the real possibility of physical harm due to an undiagnosed illness or improper treatment. The author notes, “At least 14 studies have shown that patients with a serious mental illness receive worse medical care than ‘normal’ people. Last year the World Health Organization called the stigma and discrimination endured by people with mental health conditions a hidden human rights emergency” (Garey, , n.p.). The World Health Organization (WHO), back in 1992, predicted that by the year 2020, the health burden associated with psychiatric disorders will have increased by 50%, representing 15% of the total health burden worldwide.

Thomas Insell, the director of the National Institute of Mental Health (NIMH), recently blogged that mental health care access is a necessity because “55% of counties have no mental health providers” (para. 2); and he criticized social work and psychology professionals (as the main providers of mental health care in this country) for not utilizing enough evidence-based interventions. He calls for greater quality control through new initiatives being proposed by the NIMH (Insell, ). Insell advocates for the proper training of mental health professionals through coursework and clinical supervision in evidence-based treatments as well as credentialing and monitoring. The initiative will “support the development and testing of tools and strategies for measuring the quality of psychotherapy delivered in real-world practice settings” (para. 6).

Additionally, the oft-demonized pharmaceutical industry could help. For example, like madness, male sexual dysfunction (formerly impotence) has befuddled and demoralized couples for centuries. Yet in the past decade, Big Pharm has demystified the heretofore closeted malady and put it on television. Out of the shadows and into the marketplace, drugs like Viagra moved the malady from medicalization to commercialization. These ads reframe what was once considered inadequacy to what is now considered opportunity … for warmth, closeness, and happiness. No snickering here. Medications for mood disorders require no snickering either, yet such ads could also offer warmth, closeness, and happiness. Advertisements normalize the product and that is, in part, what they are for.

Additional recommendations for mental health anti-stigma efforts

Promote the “warm handoff.”

No stigma accompanies a visit to one’s family doctor; yet, according to The Journal of American Medicine, 25% of those visiting their family doctors are identified as having a psychiatric disorder such as depression or anxiety (Beck, , p. A4). Wise physicians could introduce a mental health helper right in their offices.

Make phone calls.

Sixty percent of patients do not follow through on mental health (MH) referrals from the family doctors (Beck, , p. A4); a gentle “I’m just calling to see how it worked out with the referral you and I discussed last week” anchors the MH visit to the nonstigmatized realm of the family physician.

Advertise short-term mental-health treatments.

Most associate MH treatment with psychiatrists and with long-term, unending visits to the couch. The public needs to know that today the norm is short-term, perhaps 6 to 8 visits.

Raise the visibility and the status of social workers.

Many stereotypes have stigmatized the profession of social worker, but by and large (the realm of Child Protective serves as an exception), scariness in not one of them. In fact, social workers do most of the mental health treatment in the United States. There are 6.8 million uninsured people with mental illnesses not eligible for the ACA and only 500,000 to 600,000 MH providers in the United States. (Fields, , pp. 2, 4). Also, “some 90 million Americans live in communities with fewer than one psychiatrist per 30,000 residents…” (Beck, , p. A4). Promotion of the less threatening social worker (as opposed to psychiatrists) will demystify both conditions and treatments.

Examine Murphy’s law (no, not that Murphy’s Law).

No need here to debate the politics of this proposed law. It has its “scary” elements such as loosening the standards or procedures for involuntary commitment. But it asks the nation to re-examine its use of the $125 billion per year spent on mental health and opens the dialogue to include the advancement of new tools, such as tele-counseling and means of reducing delays in initial treatment (“A mental-health overhaul,” , p. A12).

Close “the great divide” in training counselors and mental health professionals.

Reid and Poole () reported that such programs often teach counselors-in-training from an us-and-them perspective that creates distance between helpers (us) and “helpees” (them); they added that many clients of MH services respond to such marginalization by succumbing to or rising against the dynamics of what they perceive as oppression (p. 212).

Listen to the voices of persons with mental illness.

Such clients remain painfully aware that even within treatment, they are talked about, not spoken to or listened to. Experiencing the awareness of otherness leads to a lack of agency, or autonomy, and control, all side effects of the stigma behind this otherness (James, , p. 245).

Involve clients or consumers of mental health services in their care planning.

Behavioral health organizations and programs should involve and include clients in the planning of their programs and services (Corrigan, Watson, Byrne, & Davis, ) as well as collaborate with clients to develop consumer-led organizations (Crethar, Torres Rivera, & Nash, ).

Validate difference, without discrimination.

The language and narratives of differences should be used in positive and inclusive terms, as in responding to community needs (Williams, ) and through the engagement of empowerment practices that will redefine power relations and structures at “practical, theoretical and institutional levels” (Fook, , p. 68).

Adopt the Tao as a metaphor for promoting creative contributions to social and personal change.

Humphrey () advocates for the use of Eastern philosophy and Taoist metaphysics in our professional circles, so we can not only be influenced by critical theories, as previously mentioned, but also consider a model of “change-complexity-creativity-critique” through “critical reflection, reframing and reforming” through the interplay of opposing forces, a yin-yang dialectic and cycle of change (p. 378), “leading us through a personal-professional-political journey” (p. 380). See Humphrey for a more detailed description of an Easter- influenced model of transformation.

Toward a progressive posture: Disturbed to perturbed/Dis-turbed 2 per-turbed

Forte () aligns a wide breadth of “intervention strategies” with five categories of five theoretical foci; many of these strategies and actions stand at the center or at the edges of a progressive or radical approach. His Cultural Theories, for example, demand the affirming of diversity; economic theories: advocacy for resources and fair exchanges; environment: removal of toxics; political: highlighting oppression and social movements; and social: reshaping of system hierarchies. When these broad strategies are applied to the processes of stigmatization, notions surrounding power stand front and center.

Rosenberg et al. () cite the convergence of five components as being central to stigmatization: “1) Labeling; 2) stereotyping; 3) separating ‘us’ from ‘them’; 4) status loss and discrimination; and 5) an imbalance of power… .” Indeed, number 5 stands as both cause and effect of the other four. The authors recommend that the professions find ways for victims to gain resources and social status so as to step out of the margins and challenge social, economic, and political power. They call for professional partnerships with mental-health consumer groups.

Joseph () agrees in the main. He asks social workers to ally with anti-psychiatric and psychiatric-survivor movements to challenge “the hegemony of the biomedical psychiatric system.” Note his “languaging.” Joseph not only advocates that our profession redouble its welcome of survivors for professional roles, he also invites in “anti-professionals” to fight forced treatments with force. Reid and Poole () echo these sentiments in their call for Anti-Oppressive Practice to de-pathologize mental illness and expose the “oppressor” who hides in most of us, client or worker. Summers () adds professors and recommends a de-pathologized welcome of “mad” students into social work education where their narratives of their experiences of stigmatization can serve to inform and teach classmates, academics, and educational policy makers. Summers indicts social workers themselves/ourselves for perpetuating the dynamics of stigma. She places BSW, MSW, and doctoral programs at the center of her critique and recommendations, with an emphasis on academe’s tendency to adopt and advance either/or approaches. She asserts that we either define the mentally ill as those for whom “the best we can hope for … is a life to be managed” at one extreme and those who are best left alone to clear out their demons naturally, at the other.

Hardiman, Theriot, and Hodges () also deplore the either/or polarity. They wonder out loud how consumer-run programs, most of which have been founded as grassroots or anti-establishment programs, can navigate within the broader mental health culture and manage to survive to continue their good work when surrounded by professional organizations that are starved for funds yet demand accountability. While recognizing the importance of cooperation among consumer-run programs, they also concede the necessity of engaging with traditional providers. They do not leave the latter off the hook but, rather, cite a series of recommendations for how “Traditionals” (you know, most of us) should engage with those consumers.

Those recommendations share in common not so much power taking but rather power making and power sharing. The power making springs from the guts of the mentally ill, claiming their humanity as their own in the face of oppressive systems and allying with others to promote growth of self and others. They are moving toward Becoming. If anger plays a role in liberation, then these persons move from one kind of “mad” to another “mad” and then to… . Toward something else, which they will define for themselves, beyond dis-turbed and, once again, toward renewal bound up in the per-turbed. Power sharing, on the other hand, demands a mutual crossing toward and through the progressive divide that stands at the nexus of oppressor and oppressed, with social workers et al. not only facilitating but also being facilitated. We are all on the hook.

Conclusion

The question proposed in the title of this article remains to be answered. Only time will tell whether mental health stigma can be reduced or eliminated through the changes brought on by health care reform. The only certainty is that nothing will change unless we, as professionals, make a concerted effort to assume a social justice perspective in driving ethical policy making and eliminating stigma of all types and at every level of intervention. We need to develop a societal climate that will allow antistigma-producing discourses and practices to be embraced and accepted as the norm. Finally, Western models have not proven very successful in attempts to bring about these changes; therefore, the helping professions may need to keep an open mind and look to the East for other models of change.

SWK-520: Topic 3 Assignment

 

Instructions: Identify a specific social problem or policy issue in ONE of the following areas: health care, mental health care, substance abuse prevention and treatment, systems of care for individuals with disabilities.

Considering your selected social problem or policy issue, create a “policy analysis for change” overview chart in which you concisely analyze the social problem or issue with an eye toward advocating for a more beneficial policy or program to support the well-being of an identified service population. For each analytic category depicted in the chart below, summarize key ideas and information. You may use bullet points, but responses should be clearly formulated and supported by material obtained from at least three current, relevant scholarly sources. Sources must be peer-reviewed scholarly journal articles and/or data or other relevant information obtained from a credible policy research internet source. All citations and a list of references must be in APA format.

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