Elucidating Harm Reduction Principles in a Client-Centered Representative Payee Program

Abstract

Harm Reduction seeks to mitigate harms associated with health behaviors without the expectation that these behaviors be extinguished completely. Client-Centered Representative Payee (CCRP) is an intervention that modifies the US Social Security Administration’s (SSA) Representative Payee policy by incorporating relational harm reduction. We used Human-Centered Design (HCD) methods to elucidate ways that harm reduction principles are present in and integral to CCRP and to create a blueprint for replication. Thirteen individuals familiar with CCRP brainstormed 88 statements, which were parsed, consolidated, and then independently assigned by a subgroup of participants to six principles of harm reduction. After refining the data, 29 statements aligning with harm reduction principles remained. Delineating harm reduction within CCRP, which can empower and establish trust with clients, may help other providers identify how to offer representative payee services that are respectful, compassionate, rooted in harm reduction, and ultimately improve client outcomes.

Background

Harm reduction as an approach to care seeks to mitigate harms associated with health behaviors without the expectation or requirement that these behaviors be extinguished completely (Des Jarlais, 1995; Hawk et al., 2017; Marlatt, 1996). Contrary to early medical models defining any illicit substance use as abuse, harm reduction considers substance use along a spectrum of health behavior, recognizing that substance use can range from benign to problematic and that drug use confers some real and/or perceived benefit to the person using drugs. Harm reduction also challenges the moral model of addiction by disentangling negative judgment that “substance use is wrong” (Des Jarlais, 1995; Alan Marlatt, 1996). Harm reduction honors individual autonomy and respects the person using drugs as the authority in their own needs. Structural approaches to harm reduction such as naloxone education and distribution, medications for opioid use disorder, syringe services programs, and smokeless tobacco products seek to improve health outcomes by responding to individuals’ needs while removing the assumption of abstinence as the ultimate goal. In addition to these structural examples, harm reduction builds on relational aspects of care, in which providers center clients’ self-identified needs and seek to create provider–client relationships that respect and dignify the client. Operationalized harm reduction principles for healthcare settings (e.g., humanism, pragmatism, individualism, autonomy, incrementalism, and accountability without termination, see Table 1) are part of an inclusive model of care centered on the client-provider relationship (Hawk et al., 2017). The body of evidence supporting the implementation of harm reduction approaches into client services shows improved health outcomes and reduction of infection transmission risks (Abdul-Quader et al., 2013; Aspinall et al., 2014; MacArthur et al., 2014; Potier et al., 2014; Sharma et al., 2017; Wilkinson et al., 2020) and engagement in care, (Bean et al., 2013; Drucker et al., 2016; Elbogen et al., 2007a, 2007b). Additionally, harm reduction implementation can have a stigma-reduction impact in services for historically oppressed populations such as people who use drugs (Dion et al., 2020; McGinty et al., 2018; Sharma et al., 2017).

Table 1.

Harm reduction principles, definitions, and approaches for healthcare settings

Principle	Definition
1. Humanism	Providers value and genuinely care for clients Negative judgements are not made against clients’ decisions; grudges are not held
2. Pragmatism	Providers understand that none of us will ever achieve perfect health behaviors. As such, multiple options for care are provided Abstinence and other healthcare goals prioritized by the traditional medical model are not assumed
3. Individualism	Each client presents with their own needs and strengths, and interventions are tailored to these
4. Autonomy	Shared financial decision-making is emphasized Though providers offer options for intervention, ultimately clients make their own choices about healthcare engagement and bill payment to the best of their abilities, beliefs, and priorities
5. Incrementalism	Any positive change is a step forward Positive change can take years, and plateaus and backwards movement is expected It is important to understand and plan for backward movements
6. Accountability without termination	Clients are not “fired” for not achieving goals or otherwise punished for backwards movement Clients have the right to make harmful health decisions. Providers can still help them to understand that consequences are their own

Client-Centered Representative Payee (CCRP) is an intervention that incorporates relational harm reduction in its modification of the US Social Security Administration’s (SSA) Organizational Representative Payee guidance. The representative payment program has roots dating back to 1939, when Congress amended the Social Security Act and authorized the office of the Secretary of Health and Human Services to allow the benefits of recipients with physical or mental impairments who are unable to manage their income to be paid to a third-party individual or institution of their interest (Greener, 1990). The rep-payee program gained prominence over time, and in 2004, the Social Security Protection Act was signed to ensure the rights of beneficiaries who had a representative payee were adequately protected by institutionalizing several organizational structures, readjustments, and improvements (Saks, 2005). The Social Security Administration adopted the following regulations and guidelines in the selection of a rep-payee; (1) ensure it is in the best interest of the beneficiary to have a payee; (2) appoint the right payee; (3) ensure adequate monitoring of payee activities; (4) provide adequate explanation and evidence for funds misuse (Wynn, 2016). The rep-payee program is meant to entrust benefits are judiciously used by the payee to provide all the basic and necessary needs of the recipient which includes housing, utilities, and food (Kinsky et al., 2019).

Despite these efforts, there is evidence of programmatic shortcomings and negative experiences for beneficiaries receiving payee services. Studies have shown the payee system gives room for manipulation and coercive or forceful control by the payee, with reports suggesting payees sometimes use funds as leverage to achieve their desired treatment outcome from the beneficiary. These actions can limit the beneficiary’s self-determination and sense of autonomy, and trap beneficiaries in a cycle through which they remain dependent on payees (Elbogen et al., 2007a, 2007b). There are also instances of misuse of funds, and lack of proper evaluative structure by the SSA to monitor the health effects of the payee system on its beneficiaries (Kinsky et al., 2019). These issues ultimately resulted in the demand for a system that better promotes and guarantees recipients’ protection and satisfaction, improves their quality of life, and ensures positive relationships between payees and beneficiaries.

CCRP is a modification of the rep-payee model that aims to address some of the shortcomings of the original modal. Just as harm reduction is a relational approach to addressing disease burden in substance use, CCRP is a relational approach to increasing financial stability among beneficiaries while maintaining financial autonomy (Creasy et al., 2020; Kinsky et al., 2019; Olaniyan et al., 2020). In our current clinical trial (NCT03561103), we seek to explore whether CCRP can improve medication adherence for people with HIV (PWH). This randomized controlled trial tests the effects of the CRRP intervention, which ensures beneficiaries’ bills are paid while supporting their self-determination, thereby mitigating the effects of economic disadvantage to improve housing and financial stability and, ultimately, increasing adherence to antiretroviral therapy and viral suppression. Full details of the study are published elsewhere (Olaniyan et al., 2020).

While relational harm reduction was built into the CCRP model from its inception (Davis et al., 2015; Hawk et al., 2015), operationalizing the principles of harm reduction into other programs may be difficult. In the parent study, we measure the potential effect of a CCRP model as implemented into a housing program for people with HIV. In this paper, we seek to elucidate ways that harm reduction principles were used in CCRP services which may help to inform future program development and provide useful context to other providers wishing to undertake similar approaches. The current paper describes data collected from staff participating in our CCRP study to demonstrate harm reduction factors integral to the approach and to create a blueprint for future CCRP implementation.

Methods

Our study consisted of four main steps: (1) brainstorming statements (i.e., examples) of ways that harm reduction principles are evidenced in CCRP, (2) assigning each of the statements to one or more of the harm reduction principles, (3) exploring inter-rater reliability within the assignment of statements to the harm reduction principles, (4) then refining the statements and their assignments to the principles. The last step included removing duplicate statements as well as statements where there was low agreement regarding which of the harm reduction principles were represented.

We used Human-Centered Design (HCD) methods to engage participants in an online brainstorming session to elucidate ways that harm reduction was used in CCRP. HCD, or “design thinking,” is a systematic yet creative approach to problem-solving that centers the participant in the problem-solving and design process, which melds principles from engineering, psychology, anthropology, the arts, and other disciplines (Holeman & Kane, 2020; Ideo, 2015; USAID, 2021). HCD in a healthcare or public health context focuses on people and their needs, engages the target population from the beginning of the process and sustains that engagement, and uses a systems approach to scale solutions from an individual to a population or system-wide level (Melles et al., 2021). HCD’s goals are empathy-building and shared problem-solving and focuses on the users and their unique needs to develop solutions and innovate services by encouraging active problem-solving among program partners.

This HCD sub-study, which was not an aim specified as part of the RCT parent study, included a group of thirteen individuals familiar with both the parent study and the CCRP model, and who were knowledgeable about harm reduction approaches to care. The thirteen individuals (henceforth referred to as sub-study participants) included three client service providers from our study site in Philadelphia, PA; four representatives (two researchers and two client service providers) from our study site in Birmingham, AL; two representatives (a founding board member and the Executive Director) from the housing program where the CCRP model originated, our study site in Pittsburgh, PA; three researchers from the study coordinating center; and lastly, the study’s Principal Investigator (PI) who is also a founding board member of the housing program study site.

Data were collected in January 2022 using Zoom and Mural, virtual platforms for collaboration. To begin the brainstorming session, the study PI reviewed harm reduction principles for healthcare settings, the framework used to explore and organize data for the current study (see Table 1 for a list of the six principles with corresponding definitions) (Hawk et al., 2017). Next, an external researcher from the study coordinating center who is a trained HCD facilitator and familiar with harm reduction facilitated Affinity Clustering, an HCD tool used to generate data, reveal thematic patterns, and build shared understanding within a group (Luma Institute, 2012). After describing the Affinity Clustering method, the facilitator set a timer for 10 min and asked all sub-study participants to generate as many responses to any or all of the following prompts, which were developed iteratively by the PI and the HCD facilitator, who were familiar with the harm reduction principles, the HCD method, and the aims of this study: (1) What is the role of harm reduction in CCRP, (2) How is harm reduction applied in CCRP?, and (3) What are specific examples of harm reduction in CCRP? After individually brainstorming statements in response to the prompt, sub-study participants took turns placing their statements on a shared online whiteboard in Mural, and briefly described their statements. As each person placed their next statement on the board, they could choose to locate their statement next to another already on the board they felt reflected similar concepts, or on a separate part of the board if they felt their ideas were not already captured or were only distally related to statements already shared.

After the brainstorming session, seven of the HCD sub-study participants (henceforth referred to as “raters”) volunteered to engage in a process to organize the statements in accordance with each of the harm reduction principles. Using a Qualtrics survey, each rater independently reviewed each statement and then assigned statements to harm reduction principles. Raters could assign more than one principle to each statement. They could also indicate that a statement did not reflect any of the principles or select an “I don’t know” option if they did not know how to categorize a statement. Lastly, raters could indicate if they considered a statement to be a specific, narrower example of the application of harm reduction. For example, the statement, “The agency fronts money in the event of a late/incorrect SSA payment” was seen as both capturing the principle of pragmatism as well as a concrete example of how CCRP operates.

Next, we explored the degree to which there was agreement in the alignment of the statements with the harm reduction principles, which allowed for adjudication and final decisions regarding which principles fit best with each of the statements. In cases in which all the raters selected the same principle for a statement, that statement was determined to be an exemplar for the principle. In cases where multiple principles were selected for a statement or when there was not a clear majority of opinion, three participants from the group of seven raters, including the study PI, met and adjudicated the selected principles based on majority ratings. Once agreement was met, the statements were assigned to one or more of the principles. The raters then reviewed each statement, consolidated duplicates, and isolated double- or triple-barreled statements into two or three singular statements.

We sought to explore the relationships between principles, raters, and the generated harm reduction statements to better understand rating consistency. If a statement was assigned a single principle by each rater, it would have a total of seven principle assignments. If a statement was assigned multiple principles by different raters, that statement would have more than seven assignments and was considered a statement that exemplifies more than one principle or as a less clearly articulated principle of harm reduction.

Since there was variation in the number of assignments raters could give, and statements could receive, we measured diffusion by deviation over the mean. Each rater and each statement received a diffusion score. A high rater diffusion score meant more assignments by a particular rater over the other raters. Similarly, a high statement diffusion score meant more assignments of principles to a particular statement over other statements We removed statements with diffusion scores that were above the mean and removed raters with diffusion scores at least one standard deviation above the mean, treating these as outliers. To assess inter-rater reliability, we calculated agreement in assignment of principles then divided by the total number of raters.

Since this study does not constitute research with human subjects, review by an ethics board (IRB) was not required.

Results

A total of 88 statements were generated from thirteen participants in the brainstorming activity. Because raters could assign more than one principle to each statement, some statements had up to 16 combinations of the six harm reduction principles assigned by raters, suggesting diffusion (plurality or ambiguity of principle assignment). The average number of votes per statement was just over ten. Similarly, if a rater gave each of the 88 statements a singular assigned principle, that rater would have given eighty-eight assignments. Some raters gave over 100 principle assignments and the average number of assignments among raters was just over 132. The diffusion scores helped to identify outliers, distill data, and ensure reliable illustration of principle application. We removed statements with diffusion scores that were one standard deviation above the mean. Two raters with diffusion scores at least one standard deviation above the mean were considered outliers and were removed from the model, leaving five raters. Inter-rater reliability in the assignment of principles to each statement ranged from 0.6 (in which three of the five raters had consensus on principle assignment) to 1.0 (full agreement with principle assignment), with an average reliability score of 0.828. Once the statements were parsed, redundancies were consolidated, and raters and statements with high diffusion were removed, we looked at the principles assigned to the remaining data set of 29 statements (Table 2.) Of these, 11 were determined to align with pragmatism, 9 with autonomy, 3 with humanism, 3 with accountability without termination, 2 with individualism, and 2 with incrementalism. In addition, 2 statements were selected as examples. We developed a radar graph to visually demonstrate consistency among the principles in rater assignments. Figure 1 shows overlap among the number of principles each of the 5 raters in our final model assigned to the 29 statements. Each ring on the graph represents one of the six principles, with each point on a ring representing one of the five raters whose principle assignments were included our final model (see Fig. 2).

Table 2.

Final statements and assigned harm reduction principles

Statement	Individualism	Autonomy	Pragmatism	Humanism	Incrementalism	Accountability without termination	Example
1. Meeting people “where they are”	✓
2. Assisting clients without judgement				✓
3. Approaching client interaction with compassion				✓
4. Respecting autonomy		✓
5. Focus on individualism	✓
6. Understanding providers are there to support clients, not “save” them		✓	✓
7. Giving clients a helping hand, not controlling them or setting priorities for them		✓
8. respecting client autonomy		✓
9. Respecting autonomy of individuals’ choices about money		✓
10. Ensuring ability to opt out of study		✓				✓
11. Educating clients on budgeting and budget creation		✓
12. Frequent budget conversations that help CM understand clients’ decisions		✓
13. CM can advocate for client needs at SSA-level							✓
14. The agency fronting money in the event of a late/incorrect SSA payment			✓				✓
15. Not expected to change/reduce substance use in CCRP			✓
16. prioritizing safety (budgeting checks for dealers, prioritizing housing)			✓
17. Understanding that people make decisions for a reason and even harmful behaviors confer something positive to them			✓
18. Clients can use their available funds to buy whatever they want (e.g., alcohol, drugs)		✓	✓
19. The acceptance that drug use is a reality to those who may need rep payee services			✓
20. Ensured basic needs were met in order to prevent homelessness			✓
21. Prioritizing bill payment in general			✓
22. Prioritizing housing & housing costs			✓
23. Discussing the cost of substances, works, and strategies for savings			✓
24. Valuing clients (even when you don’t like them)				✓
25. Small successes can lead to greater health outcomes					✓
26. Not firing the client because of incarceration						✓
27. Celebrating small and large steps					✓
28. Not “firing” clients even when they continue harmful choices and are frustrating!						✓
29. No termination because of money mismanagement						✓
Total	2	9	11	3	2	4	2

Fig. 1.

Study design

Fig. 2.

Radar graph

Eleven statements were generated that aligned with pragmatism, which asserts that providers understand that none of us will ever achieve perfect health behaviors, that multiple options for care are provided since there is not a single “correct” health behavior, and that abstinence and other healthcare goals prioritized by the traditional medical model are not assumed. Several of these statements that were generated directly relate to substance use:

• The acceptance that drug use is a reality to those who may need rep payee services.

• Not expected to change/reduce substance use in CCRP.

However, prioritizing housing stability is also reflected in this principle:

• Prioritizing housing and housing costs.

• Prioritizing safety (budgeting checks for drug dealers, prioritizing housing.)

Two statements assigned to pragmatism were also assigned to autonomy:

• Understanding providers are there to support clients, not “save” them.

• Clients can use their available funds to buy whatever they want (e.g., alcohol, drugs.)

A statement that was generated that was deemed to be an example of how pragmatism is practiced is:

• The agency fronting money in the event of a late/incorrect SSA payment.

Autonomy captures the idea that clients ultimately make their own decisions regarding healthcare engagement, bill payment, and other decisions that may relate to the spectrum of care offered by the provider. In the context of CCRP, shared financial decision-making is emphasized, although because stable housing is essential to all aspects of health and well-being, rent and utility payments are prioritized. Examples of the 9 generated statements that relate to autonomy are:

• Giving clients a helping hand, not controlling them or setting priorities for them.

• Educating clients on budgeting and budget creation.

• Clients can use their available funds to buy whatever they want (e.g., alcohol, drugs).

A statement assigned to autonomy that was also assigned to accountability without termination is:

• Ensuring ability to opt out of study.

Individualism (2 statements) holds that each client presents with their own needs and strengths, and interventions are tailored in accordance with them:

• Meeting people “where they are”.

• Focus on individualism.

In the principle of humanism (3 statements) the provider holds the client in high regard and prioritizes meeting their needs. Statements aligning with humanism include:

• Assisting clients without judgement.

• Approaching client interaction with compassion.

• Valuing clients (even when you don’t like them.)

The last statement acknowledges that while provider–client interactions can be difficult, clients are deserving of care and respect from their providers.

Four statements captured the principle of accountability without termination, which states that clients are not “fired” for not achieving goals or otherwise punished for backwards movement. This principle also asserts that clients have the right to make harmful health decisions while providers can still help them to understand that consequences are their own. The four statements that were brainstormed are:

• No termination because of money mismanagement.

• Not “firing” clients even when they continue harmful choices and are frustrating!

• Not firing the client because of incarceration.

• Ensuring ability to opt out of the study.

As noted above, the last statement was also assigned to the principle of autonomy.

Two statements referring to incrementalism were generated; this principle means that any positive change is a step forward:

• Celebrating small and large steps

• Small successes can lead to greater health outcomes

Discussion

CCRP is a novel approach to the SSA representative payee program that requires further elucidation so that others might consider how to adopt and implement it. To better understand the role of harm reduction in CCRP, we conducted an online brainstorming session among individuals familiar with the CCRP model. While sorting and aligning our final 29 statements, we noticed some overlap across multiple principles, especially among the principles of autonomy, pragmatism, and individualism. This is not surprising since these represent the core pillars of harm reduction upon which the CCRP model was built (Hawk et al., 2017; Marlatt, 1996). Further, the principles themselves are closely related. For instance, the principle of autonomy views each client as the authority in their own needs, which is similar to the ideology of individualism that suggests that services should be tailored to the needs of each client. There is also a clear connection between the principles of pragmatism and humanism whereby the former anticipates that, since behaviors provide some value to the client, even harmful behaviors are likely to continue, while the latter urges providers to continuously provide judgement-free services to the client regardless of the presence or continuation of harmful behaviors. The overlap also may indicate that it is likely that a provider would need to encompass more than one principle for the concept of harm reduction to be implemented.

Since the shared financial decision-making model in CCRP is conceptually quite different from the traditional, paternalistic model of representative payee in which the payee makes all financial decisions, a large portion of CCRP training provided at study sites focused on financial services. CCRP case managers meet with clients monthly to review budgets and support them in setting funding priorities including bills to be paid and monies to be saved. Another goal of CCRP is for clients to increase their ability to manage budgets effectively while minimizing the harms associated with economic instability. A goal of CCRP is to build financial literacy so that clients can eventually manage their own budgets effectively. The fact that these financial autonomy principles were emphasized in the training that CCRP case managers received prior to implementing the intervention may account for the fact that autonomy was identified in the second highest number of statements.

The harm reduction principles as applied to the CCRP intervention can create pathways to healthy conversations between the case manager and clients. Implicit in CCRP is the understanding that there is no assumption or expectation that clients will abstain from substance use. Rather than trying to prevent drug or alcohol use by limiting access to funds to pay for them, the CCRP case manager instead helps clients consider how they can work toward their ideal health outcomes in ways that maximize their safety. Since harm reduction acknowledges that drug use may be inevitable for some clients, the emphasis is placed on building client stability rather than removing access to funds, which would potentially increase the likelihood that a client would engage in behaviors to access money for drugs that increase risk of physical and/or emotional harm. Conversations with clients can center strategies to mitigate risk without expecting these behaviors to terminate (e.g., discussing use of pre-exposure prophylaxis (PrEP) to reduce risk of HIV infection, providing naloxone to reduce the likelihood of overdose death, linking clients to syringe services programs to access sterile syringes, etc.).

To further demonstrate the role of harm reduction in CCRP, we offer an example of a typical client interaction. The client and CCRP case manager sit together to draw up each month’s budget with a list comprising both fundamental needs (rent, utility bills), and client-identified needs (movie tickets, alcohol, cigarettes, drugs). The provider also offers the client a supportive process to develop financial savings, which offers a structural benefit, in terms of monies available for future needs or wants, as well as an emotional benefit, as clients experience pride in having money saved. Also built into the model are scheduled case manager-client discussions, client satisfaction surveys, and team meetings that include case managers, program administrators, and human resources personnel. Finally, CCRP adheres to all the financial reporting processes required by SSA, and monthly budget reports are generated and shared with clients as a means of ensuring their participation, improving their financial literacy, and increasing transparency. Through these interactions the provider communicates with the client in a genuine, non-judgmental, respectful, and committed manner. These interactions exemplify harm reduction principles, including autonomy, humanism, and pragmatism, and are essential to building trust with clients.

While some clear examples of ways harm reduction can be centered in CCRP were generated through our brainstorming activity, there were some limitations to be addressed in future studies. First, the sample size for this sub-study was small and all participants were directly involved with the same parent study, suggesting the possibility of selection bias and limiting generalizability of findings. While the rating exercise may have introduced bias since it was conducted with a subset of participants, we aimed to increase rigor by using multiple raters and discussing areas of disagreement until agreement was reached. While we did attempt to control for bias related to inter-rater reliability by excluding statements with wide diffusion, a related threat is that all participants had shared experiences in the study, thus the sample was largely homogenous. Our HCD method of affinity clustering enabled experts familiar with the CCRP approach to exchange ideas about the application of harm reduction; this iterative process along with our method of eliminating statements where ambiguity was present bolsters our confidence that a high degree of consensus was met. As CCRP is adopted in other settings, more data can be generated through a larger, multi-disciplinary, and more diverse sample. This may also help with identifying outliers and ambiguity. Second, the human-centered design methods relied on subjective data generation and rating, introducing possibilities of bias. Again, a larger sample with more rigorous methods is needed to correct for qualia reliance.

We also wish to note that we intentionally did not include clients receiving CCRP services in this sub-study because the perspectives of clients receiving CCRP services is critically important to understanding acceptability of and opportunities to improve the intervention. We did collect these client-specific data via surveys and qualitative interviews as part of our parent study. Nevertheless, this current manuscript focuses on the application of a conceptual model of care (relational harm reduction) that we have found can be difficult to operationalize. In fact, it took providers who were already familiar with harm reduction and had been participating in the intervention to consider how to elucidate operationalization of harm reduction; indeed, this underscores the need for this paper. Further, we believe that dissecting the harm reduction framework is less important to clients than understanding whether the intervention approach is feasible and acceptable to them, yet very important for providers who want to adopt our model. Since we strive to reduce the participant burden of reporting, we have constrained our data collection activities to those methods that are the best use of our clients’ time.

Despite these limitations, we believe our study contributes valuable findings that can help service providers and program managers consider ways to offer representative payee services that are respectful, compassionate, and therefore likely to keep clients engaged in services. According to Elbogen et. al. (2021), those with history of mental health challenges and homelessness can benefit from interventions that improve financial literacy, money management, and well-being, which are consistent with the goals of CCRP (Elbogen et al., 2021). CCRP provides an avenue for client-centered services that ensure optimum client development, independence, and satisfaction. Harm reduction programs have shown to reduce the transmission of HIV and STIs among populations living with HIV and who inject drugs (Des Jarlais, 1995), and our study builds evidence suggesting harm reduction in CCRP can similarly confer positive outcomes for clients with housing and financial instability. It is our hope that other representative payee programs will adopt our client-centered model, that human service providers will consider adding CCRP to their cadre of social services currently available, and that additional research will be conducted to expand the CCRP evidence base.