As discussed in the preceding chapters, impairment of the ability to manage or direct the management of one’s benefits can lead to the appointment of a third party—in the U.S. Social Security Administration’s (SSA’s) terminology, a representative payee—to perform that function. Representative payees who appropriately discharge their role can enable beneficiaries who lack financial capability to meet their basic needs and to sustain the quality of their lives. However, empowering another person with control over disbursement of an individual’s financial resources also creates risks for improper use or mismanagement of those funds or actual financial abuse. A representative payee’s failure to disburse funds appropriately can have life-altering consequences, including insufficient funds to pay for housing, food, and clothing. When an individual lacks these necessities, consequences can include the development or exacerbation of health problems, which may require hospitalization; a decision to turn to criminal activity to obtain money, resulting in legal charges and possible incarceration; and inability to pay rent, which can lead to homelessness or institutionalization (Conrad et al., 2006; Moberg and Rick, 2008). Given the range of potential consequences of the appointment of a representative payee, the committee was asked to consider the effects of SSA’s decision to appoint a representative payee on the beneficiary.
Representative payee programs have been found to have significant positive effects on a beneficiary’s ability to live independently, which in
turn affects the individual’s health and well-being. Appointment of a representative payee is associated with increased ability to meet basic needs (Luchins et al., 2003); declines in homelessness, victimization, and arrests (Rosenheck et al., 1997; Stoner, 1989); and increased adherence to outpatient substance abuse treatment (Ries and Comtois, 1997). For individuals diagnosed with a mental impairment, better money management is associated with superior quality of life, fewer hospitalizations, improved treatment compliance, and greater self-efficacy (Elbogen et al., 2011; Luchins et al., 2003, 2014).
Research results are mixed as to whether the representative payee arrangement reduces substance abuse (Ries et al., 2004) or has no effect (Rosen, 2011; Rosen et al., 2007; Swartz et al., 2003). Even if substance abuse does not decrease, however, clients with representative payees are more likely to stay engaged in substance abuse and mental health treatment (Conrad et al., 2006; Ries and Comtois, 1997). In addition, coordination of a community-based representative payee program with psychiatric and clinical care has been associated with reduced substance use and improved quality of life and money management (Conrad et al., 2006).
In addition to effects on individual beneficiaries, the representative payee program may have positive economic implications for the communities in which beneficiaries live. For beneficiaries with mental illness and/or substance abuse currently involved in community human service programs, these programs provide the oversight needed to maintain household independence, avoid the use of shelters and confinement, and encourage participation in substance abuse treatment. Without independent housing, people often turn to family or friends, or become homeless. The societal cost of homelessness is surprisingly high because of the associated costs of hospitalization, medical treatment, incarceration, police intervention, and emergency shelter expenses (Pinellas County Board of County Commissioners, 2012, p. 22). For example, the average cost to incarcerate an inmate for a year in a community corrections center is $26,163, which is approximately $72 per day (Federal Register, 2013). Estimates of the annual cost of chronic homelessness range from $35,000 to $150,000 per person, which is $96 to $411 per day (Henwood et al., 2015). Such expenses often are borne by taxpayers through their local governments.
In sum, the committee recognizes that appointment of a representative payee can have significant positive effects on individual beneficiaries, with notable improvements in their abilities to live independently, and on communities, which can avoid the costs associated with providing institutional care—whether in shelters, residential treatment facilities or correctional facilities—to incapable beneficiaries. However, in addition to such positive effects, appointment of a representative payee also has potential negative consequences.
There are potential psychological consequences of having a representative payee appointed to manage one’s benefits. Having access to one’s money and being able to manage it oneself is, for many people, critical to feelings of self-worth. Being able to control how one’s money is spent is considered one of the essential elements of liberty and of self-determination. Loss of control over finances can provoke fear and anxiety, be seen as a threat to autonomy, and encourage dependence (Dixon et al., 1999; Luchins et al., 2014), and having a representative payee may be perceived by the beneficiary as stigmatizing (Elbogen et al., 2008).
A representative payee is most often a friend or family member of the beneficiary, although other individuals (e.g., lawyers) or organizations (e.g., religious or community organizations, mental health centers, nursing or group homes) also may serve in this role. As work on guardianship has demonstrated, the outcome for the person with a guardian is affected by the characteristics of the guardian (Quinn, 2005; Quinn and Krooks, 2012). If the guardian is responsible, committed to keeping the person housed and in the community, and steadfast in allowing maximum personal freedom, the quality of the person’s life and the scope of permitted actions may be better than would be the case if the beneficiary were left without such support. If the guardian is not dedicated to the person’s best interests, however, having a guardian may reduce the quality of the person’s life.
Representative payee arrangements have the potential to significantly impact the beneficiary’s relationships with family members or friends serving in this role. Beneficiaries can be negatively affected by strain in their familial relationships resulting from conflict over the money management responsibilities of family members acting as representative payees. Indeed, having a family member who serves as their representative payee or on whom they are otherwise financially dependent has been found to be associated with a significantly increased risk of interpersonal conflict, aggression, and family violence perpetrated by individuals with severe mental illness (Elbogen et al., 2005b, 2008; Estroff et al., 1994, 1998). In one study, the risk of family violence by beneficiaries with severe mental illness doubled when a family member served as representative payee (Elbogen et al., 2008).
Assignment of a representative payee also has potential legal implications. As discussed in greater detail below, assignment of a representative payee infringes on an individual’s autonomy and may limit his or her civil liberties. The committee heard about a specific example of the potential legal implications at its first meeting, when SSA described its reporting requirements under the Brady Handgun Violence Prevention Act (Brady
Act).1 Under the act, any person who “has been adjudicated as a mental defective” is prohibited from possessing a firearm. Such individuals are to be reported to the National Instant Criminal Background Check System (NICS), which gun dealers must check before selling a firearm. Currently, the U.S. Department of Veterans Affairs (VA) reports to the NICS the names of beneficiaries deemed incompetent under its system. At the committee’s first meeting (Stanton, 2015) and in further correspondence,2 SSA reported that it was determining how it must comply with such reporting obligations with regard to beneficiaries deemed incapable. On January 4, 2016, the White House announced that SSA will begin the rulemaking process for reporting to the NICS.
Research has shown that, although they are not intended to take on this role, representative payees often attempt to improve treatment adherence, discourage substance use, or encourage other behaviors by using access to benefits as leverage (Appelbaum and Redlich, 2006; Elbogen et al., 2005a). Approximately 30-59 percent of patients report experiencing some form of leveraging (i.e., of access to money or housing, or avoidance of commitment to an institution or incarceration), associated primarily with efforts to reduce substance abuse and frequent hospitalizations (Appelbaum and Redlich, 2006; Elbogen et al., 2003a; Monahan et al., 2001). Attempts to influence a beneficiary’s behavior may be carried out in various ways. For example, a community mental health center may disburse benefits only when a treatment group is scheduled, thereby encouraging the beneficiary’s attendance. State-wide surveys of mental health center representative payee programs in Illinois and Washington State found disbursement of benefits to be at least moderately linked to avoidance of substance abuse in most programs and tightly linked in a substantial minority of programs. For most programs, receipt of benefits was tied less commonly to engagement in mental health treatment (Hanrahan et al., 2002; Ries and Dyck, 1997).
Leverage, however, can move beyond encouragement of desired behaviors to coercion, with the line between the two not always clear. Indeed, the same behavior may be viewed as leverage by its proponents and as coercion by its critics. Whereas leverage implies an effort to influence the beneficiary’s behavior in ways that are believed to be helpful to the person (e.g., avoidance of substance abuse), control of a person’s benefits can also be used to compel behaviors for the benefit of the representative payee
1 18 USC 922.
2 Personal communication, M. Rochowiak, Office of Disability Policy, SSA, September 21, 2015.
(e.g., demanding performance of work around the house in exchange for access to benefits), in effect exploiting the beneficiary. Beyond coercion, there is also the potential for overt misuse of benefits. For example, representative payees may pay bills with beneficiaries’ funds that benefit both the beneficiaries and the payees, such as their rent or food bills, or divert benefits directly for their own purposes. Although an examination of misuse of benefits by a representative payee is beyond the scope of this study, the potential effects of such actions on beneficiaries need to be acknowledged.
Even though leverage may produce several positive outcomes as compared with no use of leverage—for example, less alcohol and drug use and better money management (Ries et al., 2004)—the question of its legitimacy is legally and morally complex. One might argue that leveraging a beneficiary’s funds to ensure adherence is in the best interest of the beneficiary. Alternatively, critics might view such action as a violation of the beneficiary’s civil liberties (see the discussion of this issue below). To be most effective, leverage must be used carefully. One study found, for example, that clients were more likely to agree that leveraging funds was helpful if they also had opportunities to make decisions regarding their mental health treatment (Elbogen et al., 2005a). (Beneficiaries’ perspectives on leveraging of their benefits are discussed further below.) The knowledge base on the effectiveness and consequences of leverage would be expanded by additional research with control groups and alternative treatments, as well as longitudinal studies.
As discussed above, research has demonstrated many potential benefits and raised some concerns about the impact on the beneficiary of having a representative payee appointed. However, much of this research is based on reports from caregivers, practitioners, and representative payees, and less research has examined the impact from the perspective of the beneficiary. Those studies that have looked at the beneficiary’s perspective have explored satisfaction with having a representative payee, views on coercion, and use of funds.
Dixon and colleagues (1999) interviewed 54 clients with persistent mental illness who participated in an inner-city assertive treatment program and their case managers who served as representative payees regarding the benefits and problems associated with having a representative payee. They found that clients’ satisfaction with having a case manager as a representative payee was initially low, but the longer clients had a case manager serve as a representative payee, the more satisfied they became. Overall, both clients and case managers reported benefits of having a representative payee in the areas of housing, budgeting, and control of drug and alcohol
use. Fifty-three percent of the clients reported feeling very involved in the development of a monthly budget, and only 20 percent reported feeling that having the case manager as the representative payee interfered with the therapeutic process.
Elbogen and colleagues (2005a) explored beneficiaries’ feelings about the use of disability funds by representative payees as a way to improve treatment adherence. In this study, 104 clients recently diagnosed with schizophrenia or a related condition were interviewed. A majority (65 percent) of respondents reported that attempts to increase treatment adherence by withholding benefits were unhelpful. Those who felt respected by the representative payee were less likely to see this practice as coercive. Those with higher levels of education were more likely to perceive this strategy as coercive. Additionally, respondents who reported abusing substances in the previous month were less likely to endorse the use of benefits to increase adherence.
Angell and colleagues (2007) explored the effects of having a payee and the experience of “perceived financial leverage”3 on client–provider relationships. Their sample included 205 adults with mental illness who were receiving services from an urban community mental health clinic. Of those clients with a clinician as a payee, 40 percent reported perceived financial leverage. Clients with a clinician as a payee also reported experiencing more conflict, negativity, and intrusion in the client–practitioner relationship. Based on their analyses, the authors posited that “payeeship leads to strain in the therapeutic relationship when it is used as a mechanism for promoting adherence” (p. 370). Lastly, Elbogen and colleagues (2003b) conducted a study of persons hospitalized with a diagnosis of a psychotic or major affective disorder. A minority of clients with representative payees reported insufficient money to cover basic expenses such as housing, food, and shelter. However, 43 percent reported not having enough spending money for enjoyable activities. This complaint was more common among those whose representative payee was not a family member. As the authors note, lack of spending money may be highly problematic given the importance of social skills and social networks for individuals with severe mental disorders.
Taken together, this literature suggests that while beneficiaries may perceive some benefits to having a representative payee, such as maintaining stable housing, those who have a clinician as representative payee may perceive this arrangement as coercive and may experience a loss of
3 Respondents were categorized as experiencing perceived financial leverage based on an affirmative response to questions regarding (1) “whether the payee had ever withheld money until the respondent followed through on mental health treatment, alcohol or drug treatment, or taking medication”; or (2) “whether, in the past six months, anyone had made them feel as though they would not receive spending money if they did not attend treatment appointments or take medications” (Angell et al., 2007, pp. 366-367).
autonomy. However, the literature in this area is sparse and includes only individuals with mental illness, leaving the perspectives of other beneficiaries unexplored.
As noted above, appointing a representative payee raises legal issues related to individual civil liberties; it also raises philosophical issues of autonomy, societal responsibility, and justified paternalism. On the one hand, individuals who have reached adulthood are presumed to possess moral agency and legal rights that, in general, protect their decisions about personal health and well-being, how they spend their money, and how they manage their affairs. On the other hand, clear observation and a review of the available data on incapacity demonstrate that in many adults, the ability to exercise their moral agency and legal rights is restricted by developmental delay, neurodegenerative disorders, mental illness, or physical impairment. To deem someone incapable when he or she is not erodes personal liberty, creates stigma through labeling, deprives the person of the freedom to direct personally appropriate actions based on long-held values and preferences, and creates opportunities for exploitation. Alternatively, to permit someone incapable of clear inner direction to continue to manage his or her personal financial affairs may cause the person preventable harm resulting from mismanagement of funds and an increased potential for victimization by others.
Ultimately, the decision to appoint a representative payee entails weighing the beneficiary’s personal autonomy and preferences, or what remains after impairment, against paternalistic intervention meant to protect his or her best interests. Autonomy has been defined as “personal rule of the self that is free from both controlling interferences by others and from personal limitations that prevent meaningful choice” (Pantilat, 2008). In the case of persons needing a representative payee, however, it is precisely the personal limitations that demand the help of others. In such cases, a paternalistic approach may be warranted. For the purposes of this discussion, paternalism is defined as “the interference of a state or an individual with another person, against their will, and defended or motivated by a claim that the person interfered with will be better off or protected from harm. . . . At the theoretical level it raises questions of how persons should be treated when they are less than fully rational” (Dworkin, 2014). Such paternalism is commonly evident in a variety of contexts, such as legal (e.g., seatbelt laws, motorcycle helmet laws, antidrug legislation), medical (e.g., a physician withholding information about a patient’s condition), and medico-legal (e.g., civil commitment, requiring minors to have blood transfusions despite religious prohibition). In the case of SSA representative payment, the role of
the payee is to ensure that the person is sheltered and has sufficient money for food, shelter, and clothing, thus being protected from the consequences of his or her impairments and not becoming a burden on family and society.
It is also important to recognize that the decision to appoint a representative payee need not vitiate autonomy and substitute strict paternalism. Over the past few decades, the field of medicine increasingly has moved away from a paternalistic approach, with clinicians making decisions on behalf of patients according to their perceptions of patients’ best interests, toward a concept of shared decision making. Shared decision making in medicine has been defined as
a model of patient-centered care that enables and encourages people to play a role in the management of their own health. It operates under the premise that, armed with good information, consumers can and will participate in the medical decision-making process by asking informed questions and expressing personal values and opinions about their conditions and treatment options. (AHRQ, n.d.)
Such a model brings together the clinician’s expertise and the patient’s preferences, values, and opinions to reach a decision on important health care choices. Research has shown that the benefits of this model include increased patient satisfaction, more favorable health outcomes, and lower demand for health care resources (AHRQ, n.d.).
In a similar fashion, society has become increasingly attuned to assisting persons with disabilities in maximizing their intellectual potential and enhancing their moral authority with respect to decisions about their lives. Accordingly, recent years have seen a call by disability rights activists to move away from the traditional model of surrogate decision making, in which individuals are authorized to make decisions for persons with intellectual and cognitive disabilities, to a model of supported decision making, which acknowledges that some elements of autonomy—of holding values and preferences—survive despite these disabilities and are deserving of support by others.
Such a model has increasingly been encouraged or endorsed both in the United States and internationally. For example, courts in New York4 and Virginia5,6 have ruled in favor of persons with intellectual disabilities
4 In Re: the Guardianship of Dameris L., Pursuant to SCPA Article 17-A.
5Ross et al. v. Hatch, 2013.
6 See http://supporteddecisionmaking.org/sites/default/files/ross_hatch_trial_court_decision.pdf (accessed February 23, 2016).
seeking to terminate guardianship in favor of a supported decision-making model that assists and supports autonomy instead of superseding it. In 2015, Texas enacted Senate Bill 1881, enabling an adult with a disability to “voluntarily, without undue influence or coercion, enter into a supported decision-making agreement with a supporter.”7 The U.S. Department of Health and Human Services’ Administration for Community Living has endorsed this model as well, and provided funding for the creation of a national training, technical assistance, and resource center (the National Resource Center for Supported Decision Making) to gather and disseminate data and generate research on shared decision making (Bishop and Walker, 2015). The VA, as discussed in Chapter 2, uses a similar model (supervised direct payment) in certain cases in which a beneficiary is rated incompetent but determined to be capable of managing his or her benefits with supervision. Internationally, Article 12 of the United Nations Convention on the Rights of Persons with Disabilities recognizes that “persons with disabilities enjoy legal capacity on an equal basis with others,” including the right to manage their financial affairs, and should be provided, when needed, the support necessary to exercise their legal capacity.8 Many countries, including Australia, Canada, and Sweden, among others, have increasingly supported such a model.
The concept of supported decision making can inform perspectives on determining a beneficiary’s need for a representative payee. With proper support, some beneficiaries who might otherwise require the appointment of a representative payee may be able to manage or direct the management of their benefits. For example, beneficiaries with disabilities who are prone to fluctuations in financial capability may be provided support proportional to their needs as situations dictate.
Supported decision making also can inform the role of the representative payee. Representative payees endorsing and using a supported decision-making model may encourage the expression of preferences, beliefs, and values; foster collaboration in decision making; provide skills training to improve financial competence and performance; and ensure opportunities for beneficiaries to make independent decisions, whenever possible. When supported decision making is pursued appropriately, a person with a representative payee may have more actual control over his or her life than someone without such support.
7 See http://www.capitol.state.tx.us/BillLookup/BillSummary.aspx?LegSess=84R&Bill=SB1881 (accessed February 23, 2016).
This chapter has examined the effects of appointment of a representative payee on the beneficiary, which may include significant health (physical and mental), social, familial, and financial impacts. The consequential nature of appointing a representative payee implies the need to make such decisions with great care and the best evidence available.
Representative payees who appropriately discharge their role can enable beneficiaries who lack financial capability to meet their basic needs and to sustain the quality of their lives. Representative payee programs can have significant positive effects on a beneficiary’s ability to live independently; meet basic needs; avoid hospitalization, homelessness, victimization, or arrest; remain engaged in substance abuse treatment; and increase quality of life. Such programs may also have positive economic implications for communities in which beneficiaries live, which can avoid the costs associated with providing institutional care to incapable beneficiaries.
However, appointment of a representative payee also has potential negative effects. Loss of control over finances can have psychological consequences, affecting feelings of self-worth, provoking fear and anxiety, encouraging dependence, and threatening autonomy. Relationships with family members or friends who serve as representative payees can be strained by conflict over money management. Additionally, empowering another person with control over disbursement of an individual’s financial resources creates risks for improper use or mismanagement of those funds or actual financial abuse.
Although they are not intended to take on this role, research shows that representative payees may also try to leverage access to benefits to improve treatment adherence, discourage substance use, or encourage other behaviors. Leverage, however, can move beyond encouragement of desired behaviors to coercion, with the line between the two not always being clear. While leverage implies attempts to influence the beneficiary’s behavior in ways that are beneficial to the individual, control over an individual’s benefits can also be used to compel behaviors for the benefit of the representative payee, in effect exploiting the beneficiary.
Although limited, research on the beneficiary’s perspective suggests that beneficiaries have mixed feelings about the appointment of a representative payee, with positive feelings growing over time. Although beneficiaries may perceive some benefits to having a representative payee, such as maintaining stable housing, improved budgeting, and control of drug and alcohol use, beneficiaries who have clinicians as representative payees may view this arrangement as coercive and may perceive a loss of autonomy.
Ultimately, the decision to appoint a representative payee entails weighing the beneficiary’s personal autonomy and preferences, or what remains
after impairment, against paternalistic intervention meant to protect his or her best interests. However, appointing a representative payee need not vitiate autonomy and substitute strict paternalism. A supported decision-making model can inform perspectives on determining the need for and the role of the representative payee, and provide a foundation for a relationship that positively impacts the beneficiary. Representative payees endorsing and using such a model may encourage the expression of preferences, beliefs, and values; foster collaboration in decision making; and provide opportunities for beneficiaries to make independent decisions, whenever possible. Appropriate use of this model may provide a beneficiary with greater control over his or her life relative to someone without such support.
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