“Support people the way in which they want to be supported”: Best Practices for Incorporating Client-Centeredness in Representative Payee Programs

Abstract

Nearly 1 million Social Security beneficiaries have representative payees to manage their funds. Although coercion and paternalism are historically associated with payee services, a recent study showed high satisfaction in a payee program incorporating client-centered practices. Separately we reported ways organizations align payee services with their missions to empower clients and improve outcomes. Here we share results from nine provider qualitative interviews describing client-centered best practices and exploring beliefs regarding their value. We identified four best practices: Shared Decision-Making on Bills and Spending, Non-Paternalistic Substance Use Policies, Client Advocacy, and Additional Service Policies, (changing fee structures, termination policies, incorporating opting in or out, and “graduation”). Results indicate prioritizing clients’ goals and agency may improve the quality of life of beneficiaries and reduce the paternalism and coercion historically associated with payee. Creating a client-centered payee toolkit and a payee collaborative may empower organizations to refine their services and provide opportunities for shared learning and support.

Background

Millions of people in the US receive social security benefits, including Social Security Disability Insurance (approximately 11 million) and Supplemental Security Income (8 million) (Social Security). More than 9% of these beneficiaries have been appointed Representative Payees to manage their funds (Social Security). This long-standing policy of the US Social Security Administration is often mandated for individuals who are deemed incapable of managing their own funds. Typically, this includes beneficiaries with substance use disorders or mental disorders, both psychiatric diagnoses and intellectual and developmental disabilities. Family members, close friends, or organizations may serve as representative payees, but in each case, entitlement funds are no longer directly accessible by the beneficiary and the representative payee is charged with ensuring the beneficiaries’ basic needs are met (“Representative Payees: A Call to Action,” 2016; Social Security, 2005).

We recently published a systematic review summarizing the extant literature on representative payee programs. Key findings were that representative payee services are likely to stabilize housing or reduce days of homelessness, as well as to reduce inpatient utilization and increase outpatient utilization of mental health services. In addition, representative payee services may be associated with increased quality of life as well as treatment adherence related to mental health and HIV (Authors, 2015). However, negative outcomes have also been noted including beneficiaries’ perceptions of financial leverage by their payees, as well as associations with family violence and having a family representative payee (Angell, Martinez, Mahoney, & Corrigan, 2007; Appelbaum & Redlich, 2006). Still, our review underscores the fact that, given the large number of Americans affected by this policy, there is a surprising dearth of research exploring methods of providing representative payee services and the impact of these services (Authors, 2019).

In our pilot studies at a harm reduction housing program that was created to stabilize housing for chronically homeless people living with HIV/AIDS, we have found representative payee services may increase antiretroviral treatment adherence (Authors, 2015) and that clients experience high degrees of satisfaction with these services (Authors, 2015). In this setting, the approach to providing representative payee services is predicated on client-centeredness, which is hallmarked by full acceptance of the client and prioritizing clients’ goals; i.e., placing the client at the center of the intervention (Authors, 2017; Rogers, 1961). Centering the client in decision-making regarding their own goals, priorities, and needs and partnering with them in practice can help them to achieve realistic positive health outcomes. However, we acknowledge that client-centered principles are broad by nature and difficult to operationalize in practice.

When service agencies offer representative payee services and see them as an extension of the services designed to improve the quality of life of their clients, they often adapt the standard representative payee model to incorporate practices grounded in client-centeredness. Although millions in the US are served by organizational representative payee programs, there is little research exploring programmatic approaches offered by organizational payees. This gap includes the focus on client-centered services that we have witnessed in our own work in the field. And more specifically, to our knowledge there is no published literature exploring methods by which organizational payees incorporate client-centered policies and methods into their services, despite the fact that these approaches are recognized as beneficial in other settings. Shared decision-making, patient-provider relationship-building, and patient centered care have been associated with improved patient adherence to treatment regimens as well as overall clinical outcomes (Beach, Duggan, & Moore, 2007; Beach, Keruly, & Moore, 2006; Flickinger, Saha, Moore, & Beach, 2013).

To address these gaps in knowledge, we conducted qualitative interviews with providers of representative payee services to explore beliefs regarding the value of these approaches and to describe ways in which representative payment programs practice client-centered approaches to care and. A full description of these results is described separately (Authors, Under Review). Briefly, participants viewed representative payee services as not simply a means of financial management, but as methods of advancing their agencies’ missions. Specifically, the goals of these programs were to improve clients’ qualities of life, health outcomes, and financial independence. Many described the importance of working on goals identified by the client. Using data from the same set of qualitative interviews, in this paper we identify client-centered practices that organizations discussed and compile them into suggestions of best practices for providers can incorporate into representative payee programs.

Methods

We conducted qualitative interviews with representatives from 9 organizations that provide representative payee services in Pennsylvania. We used a convenience sample of social services organizations with representative payee programs either previously known to us or searchable on the Internet. Organizations were identified via Internet searches and via snowball sampling using referrals from social service providers we interviewed during the course of this study. We invited 18 organizations to participate via introductory emails and follow-up phone calls, and we requested to interview individuals directly involved with the representative payee program. We allowed organizations to determine who should participate in interviews and did not specify a limit for number of participants per interviews to enable organizations to determine who should participate. Participants included executive directors, directors of client services, and direct services staff. Due to scheduling difficulties or lack of response, half of the invited organizations were not interviewed. However, through discussions of emerging themes, the research team determined saturation had been achieved after the first round of interviews, so a second round of recruitment was not initiated.

Building from our experiences in our pilot studies, prior research on client-centeredness, and from a review of the literature, we developed an interview protocol based on the primary research question using the domains of client-centeredness that are hallmarks that guided our analysis of the data (Table 1). Interviews took place in person or by phone, averaged one hour in length, were audio recorded, and were transcribed verbatim. Interviews were coded and analyzed in NVivo 12 (QSR International Pty Ltd, Version 12, 2018) using a deductive approach, in our descriptive analysis (Bradsaw, Keruly, & Moore, 2006; Strauss & Corbin, 1990). To build an initial codebook, all 4 members of the study team read each of the 9 transcripts and iteratively developed a set of codes. Codes were discussed and refined until they were fully understood and agreed upon by all members of the study team. Next, 2 members of the team separately coded one of the interviews and then compared results, again refining codes, application of codes, and comparing coding structures until there was full agreement. These two team members then coded the rest of the transcripts, double-coding 5 of the 9 transcripts to ensure codes were applied consistently and new themes were identified. All members of the study team compiled and reviewed excerpts from the coded transcripts, then discussed and analyzed emerging and prominent themes relevant to our research questions. The study protocol was deemed exempt from review from the [name of institution redacted] Institutional Review Board.

Table 1.

Interview guide

• Let’s start with talking about some of the details about how your RP process works.

∘ How do people come to you for your RP services?

∘ How are your services different for mandated versus other payees?

∘ Who refers?

∘ What might make someone ineligible?

∘ What policies/procedures do you go over with clients before they sign up?

∘ Is there a fee for services?

• What are the goals of your rep payee program? How does this fit into your agency’s overall mission?

• Why do people use your services as opposed to a family member or friend?

∘ How long does is typically take to get an application approved by SSA?

• How many people at your organization are involved in payee and in what ways?

∘ Do all of them communicate with clients at times?

• How do you determine the amount of spending money to give your payee clients? How do you track use of funds for payee reports (especially those not designated as rent/utilities)?

• Tell me about your communication with and relationship with SSA.

∘ Are there any situations when you need to advocate on behalf of your clients? What are those like? What is your role in these situations?

• Does anyone outside of your organization play a role in the provision of payee services to your client? If so, who and how?

• How do you respond to crises or constant changes requested by clients – for instance, last minute changes to budget due to eviction, unexpected need for spending money, other emergencies, etc.?

• How and when do you terminate payee services with a client? Tell me about this process…

• What is the best aspect of your payee service?

∘ Is there any way you do RP differently than you think other Rep Payees do?

∘ Anything you wish you could change about the way you provide payee services?

∘ What kinds of things make RP successful?

• What are the rules in RP that are never broken?

• To what extent is a partnership developed with the client?

∘ How does that work?

∘ Who develops the partnership with RP clients?

• How much do clients get to weigh in on decisions about their budgets?

∘ How is this demonstrated or assured?

∘ What happens when clients make decisions about their budgets that staff feel are dangerous or not in their best interests?

∘ What happens if a client makes spending mistakes?

∘ What happens when errors occur on the rep payee side? What kinds of mistakes have happened since you’ve worked here?

∘ What happens if a client spends all of their money on drugs?

∘ In what kinds of situations do you terminate clients from services?

∘ Do you accept people back into services if they have been previously terminated?

∘ What happens when people are incarcerated?

• Give me an example (without including identifying information) about a client that was really hard to deal with? What was your strategy for handling them?

• What happens when a client no longer wants rep payee services?

∘ How do you talk with your clients about this?

∘ How do you help them assess readiness for independent financial management?

∘ What is your role in these situations with SSA?

• What are some ways you tailor services from client to client?

Results

We completed 9 interviews with 15 individuals representing payee programs across Pennsylvania (Table 2). Through these qualitative data we identified 4 best practices for incorporating client-centeredness into payee services, including 1) Shared Decision-Making on Bills and Spending, 2) Non-Paternalistic Substance Use Policies, 3) Client Advocacy, and 4) Additional Service Policies.

Table 2.

Organizational Characteristics

	Organizations’ Key Services	Representative Payee Caseload	Number of Interview Participants
1	Behavioral healthcare	190	1
2	Advocacy and support services for people with disabilities		1
3	Behavioral healthcare	500	2
4	Housing and related services	165	3
5	Housing and related services	65	2
6	Mental health services	750	1
7	Advocacy and community mental health	4300	2
8	Mental health services	300	2
9	Mental health, homelessness, and related services	500	1

Shared Decision-Making on Bills and Spending

Many representative payee programs identified budgeting with clients as one of the most important aspects of their service. Unlike other representative payee service models that require the provider to pay all expenses and determine spending money amounts, shared decision-making allows clients to prioritize bill payment and decide which bills are paid, if and how much money they want to save, and how they want to use their spending money.

We really find that involving the individual the most we can in creating the budget really creates a nice experience for both the account specialist and the individual. If you go into it saying, “We’re managing your money, and this is what we think it should look like,” it really causes waves and negative energy to fester, and then it becomes a difficult situation to deescalate. So having an open mind and going in and just talking. Do you have any pets? What do you like? What do you do during the day? Do you go out, and are you out and about? Do you like to go out to eat? Do you stay in? Are you more of a homebody? Do you watch TV a lot, so is TV a priority? (Organization #7; Advocacy and community mental health)

Shared decision-making in budgeting and updating client budgets as needed is also a way representative payee programs can provide budgeting education and financial literacy counseling to their clients as part of their service model.

Adaptability of distributing expendable funds, either through paper checks or prepaid loadable debit cards is another way for clients to demonstrate autonomy within the representative payee guidelines. Rather than programs determining the number of times per month the client receives spending money, programs may tailor their spending money distribution to clients, who can make determinations about when and how often they need money for themselves. One participant uses this language in conversations about spending money with their clients:

What can we do to make payee better for you? Do you want us to pay this bill for you? Is there another bill we can take on to make your life easier? Do you want to get your spending money once a month? Do you want to try getting it every week? Guess what, we can try every week and if it turns it doesn’t work; we can modify that too. Like let’s make this a service for you. (Organization #5; Housing and related services)

Several participants identified the need to provide resources as integral to their role as the organizational representative payee. While this may include connecting individuals to resources outside of representative payee services, it can also include assisting the individual with meeting the wants and needs they identify during conversations about budgeting:

We had one individual last month or the month before… And she had requested money for boots, and we had given her money, and she went and she bought lottery tickets. She came back the next day and say, ‘You know, I really need boots, and I did a bad thing. I took the money, and I spent lottery tickets,’ and we said, ‘Okay. We understand that can happen sometimes, but you do need boots. So let’s sit down. Let’s look online, and let’s find you a nice pair of boots.’ And we ordered them for her, and they were shipped right to the office here, and she came in, and she picked them up. And she was just so happy and grateful that she had her boots. (Organization #7; Advocacy and community mental health)

Non-paternalistic Substance Use Policies

Clients’ substance use was a prominent theme in all interviews. While many representative payee organizations hold monies from clients who have substance use disorders to prevent spending on substances, some participants identify the belief that clients should be able to do what they want with their money as central to their program. One participant described why they believe allowing clients to determine where they spend their money, even if that determination is substance use, is best:

[Some people] are feeling like that is not how you should be spending your government benefits but… That person’s goal was to maintain housing, they had no goals related to their substance use, this is their money, and they get to do with it what they want. And we are actually reducing the harm to that person by advancing that payment earlier because they could really be in an unsafe, dangerous situation where the dealer is sitting outside their house waiting for them. (Organization #5; Housing and related services)

An additional strategy of supporting clients’ substance use goals is providing flexibility regarding disbursement of funds to clients throughout the month rather than strict guidelines regardless of the individual’s needs. While some individuals handle monthly spending checks well, other clients identify the need for biweekly or weekly spending checks. For example, some programs in this study provide weekly checks for clients who identify monthly spending checks as barriers to meeting their substance use goals due to spending all of their money early in the month.

Client Advocacy

Advocacy on behalf of clients is described by participants as one benefit of a client-centered approach to representative payee programs. Most agencies described working with other service providers to advocate for the physical and mental needs of their clients in addition to bill payment, the primary function of representative payee. Examples of client advocacy include working with energy companies to lower bill amounts, assisting with acquiring basic necessities such as warm coats, food from food banks, and bus passes, and troubleshooting various problems in clients’ lives. Participants view this advocacy work as a component of their representative payee service to clients:

When they exceed their budget, I have to tell the staff. It’s like, you know, their med bills are coming in at five bucks. All of a sudden, I get 385 dollar medication bill…. I give it to staff. “You need to figure out what’s going on with their medical benefits.” Why does the pharmacy not have their insurance? And then they might find out, oh their insurance lapsed.” So it’s… everything sorta connected on the money, which we do the federal, and everybody asks me all the time about DPW, and medical assistance, and food stamps. I don’t know that’s not my thing, but I know the angels that I can send them to help them. But it is sort of all connected. (Organization #3; Behavioral healthcare)

Working with local SSA representatives is another form of client advocacy described by participants. Representative payee programs may work with SSA on issues related to overpayments owed to SSA, missing monthly checks, incorrect check amounts, etc. Working to mediate these issues with SSA provides additional income and support for individuals receiving representative payee services:

Sometimes Social Security will over-estimate wages, which will negatively impact the SSI amount, so we make sure that they’re getting the most that they’re entitled to. There’s been times that an individual moves and that might negatively affect their benefits, put them on hold or--if Social Security doesn’t have the information in their system correctly, at times, it does stop benefits, and we have to work with Social Security very closely and make sure that they have all the correct information. (Organization #7; Advocacy and community mental health)

One participant described advocating for payment plans for overpayments due to SSA in order to maintain stable housing for clients. These methods have been effective in reducing financial burdens on individuals already receiving very little monthly income.

Additional Service Policies

Fees

Representative payee programs are permitted to charging monthly fees for services of no more than $43, or $82 if the beneficiary has been determined by SSA to have a substance use disorder (Social Security, 2005). Most programs utilize this fee, which can be a significant amount of money for the individuals receiving Social Security benefits (many individuals receive less than $800 per month for their maximum SSI benefit). Participants reported that removing fees from their representative payee programs alleviates additional financial strain, shifts the model to one of service, and creates a more client-centered approach whereby the needs of the client, in this case financial, are prioritized. One participant stated:

When you have clients that live so far below the poverty line, I don’t know how you morally can charge them for the service. (Organization #4; Housing and related services)

While programs in this study identified fees as a barrier for clients, several programs were unable to sustain services without the monthly fees. While many participants felt that removing fees is the best-case scenario, recognizing fees as a barrier and treating them as such is important for providers who still charge a fee for representative payee services. Flexibility in waiving fees when feasible and urgent for the client can provide a financial buffer for clients who are unable to pay the fee that month. For example:

We budget it in so that the money is already set aside. But there are instances where maybe the pharmacy bill needs to be paid and for whatever reason, it was higher that month, and the individual needs that medication or something. We would make the exception for the month, but then resume. (Organization #7; Advocacy and community mental health)

Additionally, some individuals receiving representative payee benefits may reside personal care or nursing homes that leave them with little leftover spending money each month. Some participants in this study choose to waive fees for these individuals.

Termination

Client-centeredness may also be applied in situations of client incarceration. Although SSA suspends or terminates benefits depending on length of incarceration, representative payee programs may continue working with the client in several different ways. First, some participants reported not terminating clients from representative payee services due to incarceration regardless of length as vitally important for the support of individuals at risk of housing instability once released due to lack of funds, eviction due to nonpayment, etc.:

We don’t have to terminate services with them while they are in jail. So, like this individual is still our client and we are still managing funds. Social security will stop their benefits but we still hold their bank account for them so that whenever they are released, we can still help… get them to secure housing.” (Organization #5; Housing and related services)

Additionally, participants report that some programs continue paying the client’s rent while they are incarcerated to ensure the client has stable housing upon release. SSA may suspend benefits during incarceration, which sometimes leads to overpayment due back to SSA; some participants reported advocating for lower monthly repayments to SSA if possible. If there are no funds available at any point during the client’s incarceration, maintaining the individual’s account despite incarceration can create a smoother re-entry process for the individual.

Opting In and Opting Out

Although assignment of representative payee services is the responsibility of SSA, some participants identified that programs may create a more client-centered environment that empowers client agency. When representative payee programs work with treatment teams (case managers and service coordinators, in particular), some offer services to clients who decide with their treatment team that representative payee services will be helpful for them. Participants reported that when clients see the benefit of financial management and support in budgeting and bill payment, they may experience more self-efficacy and empowerment in financial decision-making:

And I think like another thing that I love about our payee program and I’m trying really hard to push to other providers is that I really do think it is a service. I want clients to be able to view it as a service too where they are at the center, where they are primarily making the decisions and then they can say well I decided to pay all my rent and all my utilities this month before anything else to prevent homelessness because they ultimately did decide that. They are the ones that created the budget. They are the ones that agreed to be on the payee program and how empowering is that, to be like “look what I did for myself”, like I remained housed this month because I elected to have this service and I told them how I wanted my spending money, you know. (Organization #5; Housing and related services)

SSA notes that representative payee is not provided at the convenience of the beneficiary. However, supporting clients in recognizing that they are in need of this level of assistance and then helping them complete paperwork for determination of payee assignment ensures more beneficiaries can utilize Social Security entitlements as they were intended, to secure their health and well-being.

Likewise, participants reported that when clients choose to leave the program or request removal from representative payee services altogether, advocating for their removal from payee services to SSA ensures that client choice is maintained.

Discussion

Despite studies reporting a history of negative experiences of representative payee services (Elbogen, Swanson, & Swartz, 2003; Elbogen, Swanson, Swartz, & Van Dorn, 2005; Rosen, Desai, Bailey, Davidson, & Rosenheck, 2001; Rosen et al., 2007), including coercion, misuse of funds, and loss of individual agency, results from this study indicate that many representative payee programs nested within larger service agencies are incorporating client-centered care into their models. Examples include incorporating shared decision-making around budgeting and clients’ financial goals, eliminating or reducing program fees, empowering self-determination regarding substance use, and advocating for clients’ needs to other agencies and SSA. These client-centered policies operate well within SSA’s guidelines and expectations for payees, but prioritize the clients’ goals and agency, thereby reducing the level of paternalism and coercion historically associated with representative payees.

Our findings provide practical approaches for incorporating client-centeredness into representative payee services. First, organizations can create policies that clearly articulate expectations or lack thereof regarding substance use, including removing termination policies or policies that create other “punishment” for substance use. Representative payee agencies that minimize paternalistic practices that enforce rules about what clients can and cannot do with their money will see their clients flourish with respect and dignity supported through their ability to make their own decisions. Likewise, programs can include written policies that indicate clients’ agency in prioritizing bill payment after guaranteed housing payments. Increased transparency about the prioritization of bills and access to expendable funds can provide an atmosphere of trust in an inherently untrustworthy and paternalistic process. If representative payee programs create environments where they can build trust with clients and encourage clients to discuss openly their financial stresses and needs may improve shared decision-making and improved client-provider relationships. Shared decision-making, substance use self-determination, and lack of parental authority can help clients feel empowered about the decisions they do have around their finances. Representative payee services have been shown to be a lifesaving tool in helping people maintain their housing and health. Additional research is needed to assess the degree to which client-centered representative payee services affects health outcomes, client satisfaction, and client-provider relationships.

Our study is the first to our knowledge exploring how service agencies incorporate client-centeredness into their current representative payee programs. While examples of client-centered care in practice are promising, there is no standardized model of care for client-centered representative payee services. Many programs across the country neither view representative payee as a service to clients nor incorporate client-centeredness into their programs. It is imperative to continue examining client-centered best practices, as well as associations between positive outcomes and client-centered representative payee. A client-centered representative payee toolkit is needed to empower more service agencies to incorporate representative payee as a service for their clients, as well as improve the quality and decrease the inherent paternalism found in existing programs.

Our study is not without limitations, including our use of a convenience sample of only 9 organizations. All organizations were in Pennsylvania, and all incorporated representative payee services into their missions; thus, we are unable to compare these programs to those of for-profit organizations. Two of the researchers conducting this study have prior experience with representative payee work, which could bias interpretation of results. To foster reflexivity and mitigate this bias, we used multiple coders, none of whom had prior experience conducting research on this topic or providing representative payee services. Despite these limitations, this research provides a unique and insightful starting point for this discussion. This is a first attempt at exploring how this service can be client-centered and understanding how organizations are committed to providing representative payee services in a way that is meaningful for their clients.

Many providers in this study identified the need for a way to share experiences and tools related to their representative payee services with other providers; the creation of a regional- or state-based representative payee collaborative would provide opportunities for shared learning and support. Forming communities of practice (Wenger, 2011) is one way for representative payee programs in one region or state to learn as a collective the shared goal of exchanging best practices, policies, and methods of providing representative payee services. Shared learning regarding the incorporation of client-centeredness into representative payee services is a promising step for transitioning to client-centered approaches to care. For example, although some providers in this study note the benefit of supporting clients in determining that they are in need of representative payee services, this is unlikely to happen unless we are able to change the common perceptions of representative payees as paternalistic, top-down programs. Delineating client-centered practices that can be incorporated into representative payee services may assist service agencies in their missions to improve the quality of life of their clients.