Introduction

In 2019, the Social Security Administration (SSA) provided benefits to about eight million recipients of Supplemental Security Income (SSI) and about ten million recipients of Social Security Disability Insurance (SSDI). About 37% of SSI recipients and 17% of SSDI recipients were determined unable to manage their own finances due to intellectual and developmental disabilities, substance use, or mental health disorders, including psychiatric diagnoses (Social Security Administration 2019). These beneficiaries are required to have family members, friends, or organizations serve as representative payees to manage entitlement funds and ensure their basic needs are met ("Representative Payees: A Call to Action" 2016; Social Security Administration 2005). While individuals serving as representative payees provide these services free of charge, organizational representative payees are able to deduct fees from their clients' benefits to defray the cost of services (Social Security Administration (2005). A Guide for Representative Payees; Elbogen et al. 2003c).

Despite the fact that about five million SSI and/or SSDI beneficiaries have representative payees, there is surprisingly little research exploring the impact of this policy on beneficiaries. Our recent systematic review summarized findings from studies that explored the effect of representative payee services on various outcomes, including substance use, symptoms of mental illness, and client satisfaction with services. Because we sought to report on health and related outcomes directly related to representative payee services, we restricted our review to studies that had comparison groups and assessed representative payee services specifically, i.e., not other financial management services. Positive results of representative payee-beneficiary relationships included improved quality of life through stabilized housing and fewer days of homelessness, fewer inpatient mental health visits, and increased outpatient adherence for mental health and HIV patients. Negative outcomes resulted from the beneficiaries' perceptions of financial leverage by their payees, and, in cases where family members served as payees, there was a risk of family violence (Kinsky et al. 2019). In addition to the dearth of research on this topic, studies are limited to outcomes; there is virtually no published research describing representative payee methods, approaches, and description of services beyond broadly describing representative payee as being provided by friends and families or by organizations.

In a pilot study assessing representative payee services for residents of a harm reduction housing program, we found participants demonstrated improved HIV treatment adherence (Hawk et al. 2016) and high degrees of satisfaction with services (Davis et al. 2015). In addition, results from a qualitative study with participants of this housing program indicate that (a) the representative payment program was in itself a service that helped residents to achieve their goals and not just a means of managing their finances; and (b) residents' successes were largely related to the organization's model of representative payee service delivery, which was driven by principles of harm reduction and client-centered care (Hawk et al. 2017; Rogers 1961). From the perspectives of staff participating in qualitative interviews, they integrated client-centeredness in their services by emphasizing full acceptance of their clients and by prioritizing goals of the clients. Also, they practiced a harm reduction approach, supporting any positive change in their clients' health behaviors, even in the presence of continued risk behaviors such as substance use. As a result of these findings, the organization realized that representative payee services were an essential component of its mission of addressing homelessness. As a next step in our research, we were curious to understand if other social service agencies employ similar representative payee service approaches to meet their clients' needs, and, like the organization where our previous research was conducted, consider representative payee as a service unto itself to improve client outcomes, not just a means of managing beneficiaries' funds. In our current study, we conducted qualitative interviews with providers to explore: (a) the goals of representative payee programs provided by social service organizations, (b) the extent to which these goals extend the organizations' missions, and (c) the extent to which organizations incorporate client-centered approaches in their representative payee services.

Methods

This study was conducted by researchers from an academic institution, two of which were founders of the housing program assessed in the pilot study referenced above. We invited 18 organizations providing representative payee services in addition to other social services, including housing and mental health care in Pennsylvania, to participate in qualitative interviews. We informed representatives of these organizations that the purpose of the study was to understand processes used to conduct representative payee services and to explore the degree to which client-centered principles informed services. We utilized convenience sampling to recruit social services organizations providing representative payee services. Organizations were recruited via phone and email and included those we knew previously from our fieldwork, as well as those identified from a Google search of organizations offering representative payee services in Pennsylvania. There were no exclusion criteria. We attempted to contact organizations that did not respond to our recruitment emails and calls at least three times. Fifteen participants from nine organizations participated in interviews with some interviews including more than one staff member of the organization. Through discussion among the research team, we identified saturation was achieved when these were concluded and thus did not initiate a second round of recruitment. We allowed organizations to decide who should participate but indicated that participants had to be those that are most familiar with the organizations' representative payee programs. We did not specify a limit or target for the number of study participants from each organization. Participants included direct services staff, directors of client services, and executive directors.

The study team employed a qualitative descriptive approach. We developed our interview protocol based on our pilot study results and a review of the literature, focusing specifically on the primary research question exploring the goals of representative payee services for these organizations (Table 1). The theoretical framework for the protocol and analytic process was built on Carl Rogers's person-centered approach, in which clients' self-identified needs are prioritized, and they are treated with unconditional positive regard (Rogers 1961). Guided by Carl Rogers’s philosophy and based on our findings from our pilot study in the harm reduction housing program, our interview guide included questions exploring strategies employed by these organizations to ensure client-centeredness and to assess and prioritize their clients' needs, as well as the degree to which client-centered versus paternalistic policies or methods were employed.

Table 1 Interview guide
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Interviews averaged one hour in length and were conducted in person or via telephone. All interviews were recorded and transcribed verbatim. Five members of our study team coded and analyzed the transcripts using NVivo 12 (QSR International Pty Ltd, Version 12 2018) and a deductive approach with contextualizing and categorizing strategies (Strauss and Corbin 1990). First, each of the researchers read all of the transcripts, iteratively developing an initial code set which was grounded in the client-centered framework noted above. We discussed and refined the codes until we agreed upon and understood all codes. Then, two members of the team separately coded one of the interviews and compared results, again refining codes and their application, and compared coding structures until they concurred on the use of codes. These same two team members then coded the rest of the transcripts. Five of the nine transcripts were double-coded, ensuring codes were applied consistently while exploring and identifying new themes. Finally, all members of the study team read excerpts from the coded transcripts then discussed and analyzed emergent themes, as well as those directly related to our research questions. The study protocol was deemed exempt from review from the University of Pittsburgh Institutional Review Board.

Results

Ultimately, half of the organizations we invited participated in qualitative interviews, totaling 15 individuals across nine organizations within Pennsylvania. While no organizations declined participation, some never responded to our emails or were unable to be interviewed due to scheduling conflicts. Representatives from the housing program, whose pilot study results provided the impetus for the current study, participated in an interview, although the interview was not conducted by the researchers who were founders of the program. Table 2 shows primary services provided by each organization as described on their websites, the average number of clients provided with representative payee services by each organization, and the number of individuals from each organization that participated in interviews. None of the organizations were for-profit entities, although we invited one for-profit organization to participate in the study.

Table 2 Organizational characteristics
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When asked about the reason for providing representative payee services, all of the participants described representative payee service as a means of advancing their organizations' missions of serving vulnerable populations, including those with mental health disabilities or who were homeless, living with HIV/AIDS, or otherwise in need of structural interventions and supports to improve their financial advantage. For participating organizations, representative payee service was not seen as a program solely for financial management but as a service to help clients achieve their goals and improve their quality of life. In exploring goals of the organizations' representative payee programs, participants volunteered that they work towards ensuring their organizations’ goals in general were client-centered and not punitive, though we did not directly probe for client-centeredness.

Being person-centered. But it's also the thing that makes it, you know, a little more difficult to manage. The programs that have a lot of rules in place that they have all those rules in place because it makes it easier for the program… to manage it, for the agency to manage the program and where more people are in it. So we take the more difficult route, but we think it's better for the people that we serve. (Organization #4; Housing and related services)

Through our analysis, we determined that the goals of these representative payee programs fell into three main categories, which aligned with the organizations' overall missions. These categories include financial and housing stability, financial literacy, and improving health outcomes, including quality of life.

Financial and Housing Stability

Discussions of financial and housing stability incorporated topics relating to bill payment, reducing chaos, and advocating for clients' housing and other practical needs, including assistance with alcohol/drug use and re-entering the community post-incarceration. All participants discussed managing their clients' benefits specifically to help them achieve financial stability, not just to manage their money as required by SSA.

Goals are making sure that our consumers have their basic needs met, making sure that they understand where their funds are going, and trying to ensure they have the items they need throughout the month, the resources and items, personal items, care items, things like that that they need. So, our mission as an agency is just making sure that we're embracing the recovery and the resilience of everyday life. (Organization #9; Mental health, homelessness, and related services)

These organizations reported several strategies to help their clients attain financial stability, including working with their clients monthly to develop budgets and make collaborative decisions on bill prioritization and payment. They also helped clients improve financial stability through advocacy for affordable rates with service providers, such as cable or telecommunication companies, as well as with SSA, in cases where accurate funds had not been provided. Advocacy with SSA was also deemed necessary in cases when clients owed SSA a backlog of funds or family or friend payees had mismanaged clients' funds.

So, we have had people who have been in and out of jail, and it's like trying to… checking Social Security's math on like "did they actually overpay in this amount?" or "how much does he really owe back?" and navigating back payments, and it's hard. So, we try to advocate, if there is any back payment to Social Security, we just tell them due to financial hardship and to avoid housing instability, this person can currently pay between like $20–25 a month, So, we advocate for payment of a lower monthly amount for our clients. (Organization #5; Housing and related services)

Given their clients' benefits were limited and the goal of the payee services was to ensure financial stability, some organizations reported providing representative payee services entirely free of charge while others waived payee fees for months when they knew clients had other bills to prioritize.

So, there were lots of people accessing payee services at other agencies, but there were a lot of pitfalls associated with it. So, we wanted to create a program that alleviated those pitfalls in other programs in terms of cost. So, we provide services free of cost. Cost was a huge issue. (Organization #5; Housing and related services)

Financial Literacy

All of the representatives of the organizations emphasized the goal of assisting their clients achieve independence by providing them with the knowledge and skills to manage their funds and create and execute budgets within their financial means. A client's independence and ability to manage their own funds meant the client could "graduate" from the representative payee program. Although clients' graduation from the program meant these organizations would lose these clients, they were proud to assist their clients attain a level of financial autonomy. This further demonstrates the organizations' view of representative payee as a social service to their clients and not simply a means to an end. The study participants described the incremental process of building clients' financial independence.

We might do a little mini meeting at one of our payee workshops that I talked about to kind of go over their budget, see what their thoughts are. We wouldn't rush them out the door. We would always offer them the transition period. So, if they're one of our consumers who is getting a weekly check, we might bump them up to a semi-monthly check, so they have that practice of a little time without money. Then a couple of months later we bump them up to a monthly check, see how that goes. Kind of building their confidence over the time so that they're seeing that, "Oh hey, I can do this." And then kind of the last step is after their monthly is doing that one menial bill like the Comcast or the Verizon cell phone, whatever it is, kind of putting that all on their spending…. And then finally they're at the last step where we would advocate that they could be their own payee.… Sometimes it's a year and a half, too, depending on the consumer and how safe they feel and confident they feel because payeeship is not meant to be forever… (Organization #9; Mental health, homelessness, and related services)

Additionally, the participants discussed how they could assist their clients save a portion of their benefits as part of their role as a representative payee; this could assist clients develop saving habits.

But I think the bigger goal is to make sure that they have a savings, that they're used to living on a set amount of money, they're able to make that work. If a washer or a drier goes, or a television goes, that they have enough money in that savings to purchase that item outright, where they're not doing any kind of credit thing or renting something from Rent-A-Center or something. I think that that's a pretty good goal for them to have. (Organization #8; Mental health services)

From the participants’ perspectives, their organizations have developed and are implementing gradual processes to support financial literacy for their clients and empower them with essential life skills. The representatives of these organizations reported how these processes have been successful for some of their clients and allowed them to be independent and no longer require representative payee services.

It can be quite lovely and quite gratifying when you see people–they'll call it "graduate" from our payee, and will call us back and be like, "I made it one month, and I paid all my bills." It might be [inaudible], but just how grateful they are to my staff or this program, and things like, "You saved my life." That's good work. That's lovely, lovely work. (Organization #1; Behavioral healthcare)

Achieving Health Goals and Improving Health Outcomes

While SSA upholds the representative payee program to ensure clients' basic needs are met, our participants delineated ways that payee extends this goal by helping their clients to achieve health goals and improve health outcomes. They reported representative payee services helped reduce their clients' financial stress, allowing them to prioritize their health and mental well-being.

Keeping people housed is the best aspect of our program. People that are out in the community and are chronically homeless is a—it's a big issue and its upped hospitalizations and incarcerations… But to keep people in permanent housing for any length of time I think is really the best thing about our program. And to alleviate that stress, that's really the best thing we can do for people. Quality of life. (Organization #8; Mental health services)

Representative payee services were viewed as part of a system of care, not a stand-alone program. These organizations provide representative payee service alongside other medical and social services, including mental health services, disability support, and housing services. The representatives of these organizations also described referring clients for medical and social services they did not offer, including substance use services, transportation, and food support. Becoming aware of clients' practical needs while working with them on budgets provides an avenue for offering needed referrals.

We're a human services agency here, that's what makes us totally different. I mean, we're in the big service unit in [location redacted]. We have a collective amount of programs here. We're in the jail. We're on the inpatient mental health units. We're everywhere. So, our focus and our philosophy is to have the consumer involved in their recovery basically, and then payee's part of that. (Organization #8; Mental health services)

Participants also reported payee services helped social workers and case managers focus their time on health or other program goals since the payee provider could address housing applications, utility payments, and other basic needs. Clients meeting with their case managers or representative payees monthly to work on their budgets created avenues for social workers to follow up on the clients' health issues.

Also, because the people we work with are typically considered lost to care, having the social worker act as the liaison [for payee services] created a connection to medical care. Right, because they had to show up to the clinic to adjust their budget or call their social worker and that was the opportunity for the social worker to say "Hey [name redacted], you haven't had labs in a year, can you come in today? Let us work on this." We have seen tremendous outcomes associated with that. (Organization #5; Housing and related services)

Although representative payee service is seen more as a financial management service, the participants expressed the belief that it assists their clients achieve their health goals and improve their health outcomes.

Our goal is to be able to help them and facilitate their goals. On the aggregate level, I would say that our goal again is to continue to provide a free non-cohesive and person-centered service as well as see and hopefully facilitate or ease financial chaos so that people can then prioritize their healthcare and their quality of life. (Organization #5; Housing and related services)

Challenges

The provision of representative payee services is not without its drawbacks. Participants from these organizations highlighted the various challenges that arose related to these services and the difficult situations representative payee provider’s encounter. The research team did not directly probe the participants to discuss these challenges; these issues emerged in discussions related to our three research questions. Challenges discussed included staff and clients' complaints as well as organizational challenges. These organizations reported experiences of client dissatisfaction with how their money was managed, which included frequent reports of clients requesting all their money in lump sums despite the budgets they developed with staff members. In addition, some providers reported their clients complained about the inability to be removed from representative payee services as quickly and easily as they wanted.

Sometimes obviously they just want all of their money. They don't understand why we have to break it up. But it's ultimately up to us. I mean, that's why we were assigned as their payee. We do try in those scenarios to have meetings with them. Sometimes we have what we call payee workshops where we actually have someone from our county office come in, kind of mediate as a third party so they can hear the consumer side, they can hear our payee side, like "Here's what's going on." We work through the budget. We actually put it on the whiteboard to say, "Okay, here is your money coming in. Here is your money going out. Here is what you have left." Most of the time that solves those issues and if it doesn't, that's when we kind of have the conversation as to, "Unfortunately, these are the rules that Social Security has provided us. This is how we kind of have to run our show." But you're welcome to find a new payee at that point. (Organization #9; Mental health, homelessness, and related services)

Participants described clients presenting with emergencies that were sometimes time-sensitive. Some clients felt emotional about the intensity of these situations, and at times expressed these frustrations by being physically or verbally abusive to staff. These experiences led to staff spending significant time attempting to resolve their clients' challenges and ensuring their needs were met, at times leading to burnout for some direct service providers.

And the hard thing is that with the newer case managers there is consistent turnover in this field because we know we are not paid well. It is a tough job, so we acknowledge that a 100%, but this program was created because the people that we worked with asked us to do it. It was something that they wanted. (Organization #5; Housing and related services)

In addition to staff and client complaints, participants also discussed challenges faced by the organization, including making errors with payments such as forgetting to send a check or sending checks to the wrong clients. These organizations emphasized the ways they take ownership of these errors and develop creative solutions to resolve them, such as the organization fronting clients' money or providing alternative payment methods like debit cards to provide funds promptly to mitigate the negative impact of these mistakes on clients. In addition, they incorporated methods to proactively reduce possible errors such as employing more staff and delineating roles and responsibilities, as well as using debit cards for clients who preferred them to avoid errors with checks.

I think we're all human, so we make mistakes. We try to correct them as much as possible. I mean, as quickly and as truthfully as possible. If we write a check from the wrong person's account, we would correct it by– not that this happens all that often, but we would make sure that the funds from the wrong person's account went to the right person's account, so it corrected itself. Sometimes we get data entry errors. So we might mail a check to the wrong place, and as soon as we find out– like if the consumer calls to say, "Hey, I didn't get my check," we can say, "Oh, well, this is when we're mailing it. Oh, that's an encoding error." We can fix it and we re-issue a check for them. (Organization #9; Mental health, homelessness, and related services)

Despite these challenges, participants emphasized the importance of representative payee services and how this service was relevant to improving their clients' outcomes and achieving their organizations' missions.

I think from an agency perspective the best part is I feel as if we are truly fulfilling our mission, like we are truly providing person centered services that support people in the way in which they want to be supported. I am very proud of that. I think the better part of this is the feedback that we get from our payees that are like [Name] who is gone for 6 months and walks in and says "Thank God for payee I would have been dead, it saved my life" or you know "initially I didn't like it but now I'm in control of what I do and I love that" or … "I don't have to worry about staying on the streets anymore". Just simple things like that, that we take for granted but provide people with that kind of normalcy and comfort. (Organization #5; Housing and related services)

Discussion

Research on representative payee programs has largely been limited to its effects on beneficiaries' health outcomes (Kinsky et al. 2019), client-provider relationships, and clients' and case managers' perceptions of this service. Despite the significant number of individuals in the US being served by organizational representative payee programs, there is little research exploring the goals of organizational representative payee programs and how these align with social service organizations' missions. To our knowledge, our study is the first to explore the goals of representative payee services for social service organizations providing them, as well the first to examine the approaches and strategies employed by these organizations to achieve their programmatic goals. Our study found that these organizations had three main goals for clients of their representative payee programs: financial and housing stability, financial literacy, and improving health outcomes, including quality of life. These goals were achieved by understanding and advocating for their clients' needs, ensuring continuous communication with clients, and employing approaches identified by our study participants as being client-centered.

Previous studies have demonstrated associations with representative payee services and increased odds of violence, especially when representative payee services are provided by family members (Elbogen et al. 2005; Labrum and Solomon 2016). While the representative payee program has historically been associated with coercion (Appelbaum and Redlich 2006; Elbogen et al. 2003a, 2003b), participants of our study underscored the idea that when viewed as a means to improve clients' qualities of life, representative payee services are meant to empower, not punish, clients. It is also important to note that studies reporting coercion associated with representative payee services have demonstrated these findings primarily in mental health settings. Since a majority of the organizations that participated in our study do not provide mental health services, we are unable to directly compare findings of coercion from extant literature. Nonetheless, concerns regarding coercion highlights the need for more studies like ours that examine representative payee services in applied contexts across the range of representative payee service providers. These concerns also underscore the need to make client-centeredness a universal practice for representative payee service providers. Participants highlighted examples of client-centered practices, including shared budget decision-making and eliminating representative payee program fees, as methods of reducing paternalism and supporting clients' goals. They also highlighted the challenges these organizations encounter with integrating client-centeredness in their representative payee services. Currently there is little research delineating ways that client-centeredness is incorporated into the provision of representative payee services. Results providing more detail on the provision of client-centered representative payee service are discussed separately (Creasy et al. 2020). These findings may assist organizations providing representative payee services and those considering incorporating this service with navigating the goals of the program, methods to achieve these goals, and strategies to assist with integrating client-centeredness in their representative payee program.

The representative payee program has historically been viewed simply as a financial management service but results from our study highlight how some organizational representative payee programs provide their clients with more than money management. For these social service agencies, representative payee program goals are closely tied with their organizations' missions of improving their clients' qualities of life. Their representative payee programmatic goals include providing their clients with financial and housing stability along with the knowledge and skills to manage their funds independently. Both of these goals and other strategies incorporated into their representative payee programs assist their clients in achieving their health goals and improving their health outcomes.

Our study has several limitations. First, the study was conducted mainly by researchers with experience delivering client-centered care and representative payee services, which may bias results. We mitigated this bias by ensuring no researchers interviewed participants previously known to them and by coding and analyzing via a team-based approach, discussing results, and exploring emerging themes. In addition, we used multiple coders for data analysis and ensured researchers who were closely aligned with these organizational representative payee providers were not coders to further mitigate this bias and foster reflexivity. Only non-profit organizations participated, though they encompassed housing, mental health, and substance use providers. Fee-for-service representative payees may yield different results. Also, we utilized convenience sampling to identify organizations for recruitment, and all participants were recruited from organizations in Pennsylvania, though there was statewide geographic representation. Additionally, we did not examine the perspective of the clients receiving representative payee services from these or other organizations, which likely would have yielded different results, especially regarding issues related to client-centeredness and coercion. There is a need to conduct qualitative research with clients receiving representative payee services to understand their perspectives on how organizations can operate from positions of client-centeredness, which we believe will provide critical information about how to maximize the value of the representative payment program. Despite these limitations, no other study has addressed this topic to date. Our findings may create a starting point for other researchers to further explore the goals of the representative payee programs and the ways these services align with the organizations' missions.

Despite our previous experience with representative payee services, we were surprised by these organizations' descriptions of their commitments to improving their clients' qualities of life and their strategies to strengthen their financial management skills. Skills and competencies related to budgeting and financial independence are not typically taught in schools but through families. However, intergenerational poverty and related challenges may limit these abilities, underscoring the needs for representative payee programs and other social service agencies to fill these gaps.

It is important to note that though SSA indicates representative payee services should "help motivate a beneficiary to work toward more independent living," (Social Security Administration 2005) it provides limited guidance on how to accomplish this. Participants in our interviews reported strategies they use to meet SSA expectations for representative payee programs using approaches that align with client-centered care. Still, additional efforts are needed to capture collective experiences and best practices regarding the provision of representative payee services by social service organizations. This will ensure that other organizations providing representative payee services can implement methods to reduce health disparities and ensure the widespread positive impact of representative payee services. Program guidance on how to effectively provide representative payee services to improve client outcomes, even beyond meeting SSA expectations, is essential.