The Tasks and Characteristics of Supportive Support Brokers

ABSTRACT

In the United States, under the Cash and Counseling or budget authority model of self-directed personal assistance where the participant manages his or her own services and supports, the Support Broker role was established to assist and coach the participant. The support broker role grew out of a person-centered planning process where focus groups and surveys helped ascertain what potential participants wanted to help them establish a self-directed alternative. But, despite this role being described in policy guidance from the Center for Medicare and Medicaid, little research has been conducted examining the functions, activities and usefulness of this position. This study draws on 76 ethnographic case studies with early Cash and Counseling participants, examines what participants and their caregivers actually saw the support broker doing, and looks at what the participants found helpful and less than helpful. Participants and family caregivers saw support broker duties as falling into four areas: Coaching, Problem Solving, Advocacy and Monitoring. Equally important was how the support broker performed these duties. Key aspects of quality included: Familiarity, Supportive Relationship, Proactive Engagement, Responsiveness, Knowledge and Cultural Friendliness. These findings can provide the basis for establishing quality indicators for self-direction.

KEYWORDS:

• Familiarity
• supportive relationship
• proactive engagement
• responsiveness
• knowledge and cultural friendliness

Background

In the late 1990s the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services, together with the Robert Wood Johnson Foundation, funded a large randomized control experiment in the states of Arkansas, Florida and New Jersey to examine the outcomes when participants eligible for Medicaid-funded home and community-based services were able to self-direct their personal assistance supports and services. Under this Cash and Counseling, or budget authority, model of self-direction, the participant had control of a budget roughly equal to what an agency would have spent on his/her behalf and could use those funds in any way that helped him/her remain independent in the community. But how was this model operationalized? Between 1997 and 1998, while the federal research and demonstration waivers were being negotiated and the states were thinking through how to handle day-to-day operations, the Robert Wood Johnson Foundation provided the Cash and Counseling National Program Office funds to conduct focus groups (Simon-Rusinowitz et al., 1997; Mahoney et al., 2004) with Medicaid-funded home and community-based service recipients in each of the demonstration states. The purpose of these focus groups was to better understand how many and which personal assistance recipients were interested in the option, what information they (and their circle of family and friends) needed to make a decision on whether the self-direction model was best for them, and what supports potential recipients thought they would need to make this self-directed alternative work well. This latter purpose can be seen as the participant input into the design of the model. In addition to learning that existing home care clients did not want the cash itself (as most wanted to hire workers and they did not feel capable of handling all the taxes and labor laws), the most interesting finding was that these individuals did not want a case manager, in the traditional medical model where the “professional knew best”. Instead they wanted more of a coach who could help them think more broadly about their needs and resources, assist in developing a spending plan and locating other community resources, develop a back-up plan to handle situations where their worker did not come, locate resources to help train their workers, and even think through how to terminate workers that were not meeting the participant’s objectives. This new position has officially come to be called a “support broker”, is also known as a counselor, coach or consultant.

This new position was accepted by the Health Care Financing Administration, now the Centers for Medicare and Medicaid Services (CMS), and is now a required element for any state wishing to set up a self-direction program option under Medicaid (Medicaid.gov Self Directed Services, n.d.). Each Medicaid funding authority, be it State Plan or Medicaid home and community-based service waiver, has different guidelines but all authorities share the following characteristics: person-centered planning process; service plan; individualized budget; and information and assistance in support of self-direction. Under this information and assistance requirement,

States are required to provide or arrange for the provision of a system of supports that are responsive to an individual’s needs and desires for assistance in developing the person-centered service plan and budget plan, managing the individual’s services and workers and performing the responsibilities of an employer. Examples of self-directed supports include, but are not limited to: information regarding how a self-directed care program works; individual rights and responsibilities; and available resources; counseling; training; assistance, such as the use of a supports broker/consultant and financial management services (FMS); and access to an independent advocacy system available in the state. The amount and frequency with which an individual uses the available supports varies by person and circumstance.

Medicaid Support Guidelines further state:

A supports broker/consultant/counselor must be available to each individual who elects the self-direction option. The supports broker/consultant/counselor supports the individual in directing their services, and serves as a liaison between the individual and the program, assisting individuals with whatever is needed to identify potential personnel requirements, resources to meet those requirements, and the services and supports to sustain individuals as they direct their own services and supports. The supports broker/consultant/counselor acts as an agent of the individual and takes direction from the individual (Medicaid.gov Self Directed Services, n.d.).

Guidelines for this position were further enunciated by the Secretary of Health and Human Services (Sebelius, 2014 Section 8(f)) under Section 2402a of the Affordable Care Act. These include: “Support broker/agent services, irrespective of payment method (fee for service, managed care). If there is no support broker/agent required or chosen, the person must have training in acting as his/her own support broker.”

https://www.ncd.gov/policy/chapter-4-basic-features-self-directed-medicaid-services

Before proceeding it is important to recognize that the functions and roles of this position share some characteristics with supportive positions in other parts of acute, chronic and long-term care (e.g.), but this support broker position itself was still both new and unique. From the start support brokers were meant to work with and for the participant and not have a business relationship with existing services that the participant might select.

But, despite the central role of the support broker position little has been written on this topic and most of what has been written involves small qualitative or exploratory studies informing program development. Quach, O’Connor, and McGaffigan (2010) in a small study in Massachusetts found that brokers struggled with when, how, and how much to assist participants. Because they were trained to leave decision making to participants, they struggled when participants did not live up to their expectations regarding establishing and implementing a spending plan. Randall and Bekteshi (2012) surveyed states with self-direction programs to better understand what functions and tasks states expected support brokers to play. These authors found wide variation in who provides support broker functions, how they are carried out, and how support broker functions were coordinated with the activities of others. Jeon, Mahoney, Loughlin, and Simon-Rusinowitz (2015), building on this earlier work, surveyed support brokers in three states to better understand what they saw as their tasks, which ones they felt comfortable with, and what education or training they had for these new positions. This study found significant variation among the states as well as numbers of areas where the new support brokers felt they needed additional training.

Most of the other writing on support brokers was done in Australia, informing the development of that country’s new National Disability Scheme for providing long-term services and supports in which each participant has the option of managing a budget. These studies (Laragy & Allen, 2015; You, Dunt, & Doyle, 2016, 2017) focused on the concerns and expectations of care managers as the national scheme was being implemented. Care managers were concerned about being brokers, mediators and counselors and in some cases expressed an unwillingness to perform these roles (You et al., 2016). Some were also concerned about losing power; while others looked forward to roles strengthening clients’ capacities to advocate for themselves (You et al., 2017). This latter article also found that care managers and support brokers in Australia thought they would need to provide less support for self-directing participants.

This leads us to our present work, which is the first to look at participant and caregiver points of view. We want to learn from participants and their caregivers (and where possible their actual support brokers) what support brokers actually do and what the participants and their caregivers find helpful, and less than helpful. Our research questions therefore are:

1. From the point of view of program participants, their caregivers and their support brokers, what functions, activities and roles do support brokers actually play?

2. What qualities of the support broker did program participants and their caregivers value in their interactions with support brokers?

In conducting this research, we were fortunate, as described below, to be able to tap the 76 ethnographic studies conducted during the first year Cash and Counseling was in operation (San Antonio, Simon-Rusinowitz, Loughlin, Eckert, & Mahoney, 2007).

Before leaving this section, it seems valuable to mention some of what we gleaned from the literature on what support activities are helpful and which are not. Whereas the support broker role was totally new, we can see from quite different interventions which aimed to support participants who needed acute as well as long term supports such as the Social/Health Maintenance Organization or early Medicare home care experiments in upstate New York and Pennsylvania that participants were much more apt to be satisfied with their supports and services if they could name their case manager (Leutz & Capitman, 2007), and an affiliation with a disease management-health promotion nurse intervention helped to integrate long-term services and supports with acute care needs Meng et al. (2009). Research in New York State on family support specialists, a somewhat analogous position, working with children with serious psychiatric conditions (Wisdom et al., 2014; Olin et al., 2014) point to the advantages of developing quality indicators. Our research on participant and caregiver perceptions on support brokers can be a first step in this direction.

Methods

This is a secondary analysis of data originally collected in an ethnographic study of the Arkansas (AR), Florida (FL), and New Jersey (NJ) C & C Demonstration Programs. The study was approved by the Institutional Review Boards at (Universities). The methodology of the parent study is described in detail elsewhere (Mahoney et al., 2018; Eckert, San Antonio, & Siegel, 2001; San Antonio, Eckert, Niles, & Siegel, 2003; San Antonio & Niles, 2005). Briefly, a total of 76 case stories were developed from in-home interviews of a representative sample of participants, caregivers, and when possible, support brokers (“care units’) from the three demonstration sites. Interview questions included the type of help needed and services provided from the perspective of “care unit” members. The case stories are narrated by the researchers and include observations and direct quotes to provide a detailed description of experiences in the program from the perspectives of the members of “care units.”

Methodology for current study

The aim of this study was to a better understandparticipant/representative, caregiver and support broker perspectives of the role of the support broker member of the care-unit. A ‘collective’ method of case study as outlined by Stark (1994), whereby 3 members of the research team independently examined all 76 case studies was used. This is often referred to as an instrumental or multiple-case study method, aimed at providing insight into an issue or problem or to refine a theory. The complexities of the individual case is secondary to understanding something else (Stark, 1994), in this case, the process and experience of interacting with the support broker.

While previous research discussed the self-perceived roles and preparedness of support brokers (program counselors) (Jeon et al., 2015) our research team of clinician researchers (3 Social Workers & 2 Nurses) attention was focused on the narratives of the participants/representatives, caregivers and support brokers as they interacted within the context of real life situations. The review/analysis process followed the ‘logic of repetition’ as suggested by Yin (2009) to ensure that a similar approach to the data was used for each case study. Conventional qualitative content analysis, as described by Hsieh and Shannon (2005), was used to derive coding categories directly from the text of each case study. This was followed by a cross-case analysis (Cresswell & Poth, 2018) to answer the research questions.

The review process followed a pattern of reviewing approximately 6–8 transcripts at a time during bi-weekly team meetings until all the case studies were analyzed. Data analysis was completed in September, 2018. Several steps were taken to ensure qualitative rigor (Tong, Sainsbury, & Craig, 2007). Transcripts were independently coded prior to research meetings so that we could discuss, compare, and contrast coding and categorization. An iterative process was used to review how text that described the roles and qualities of support brokers had been coded, discuss the categories that emerged from the data and memo exemplary/interesting quotes. Similar codes were grouped into categories (Creswell, 2013; Erlingsson & Brysiewicz, 2017; Hseih & Shannon, 2005). If any inconsistencies emerged from the independent review of the transcripts they were discussed at team meetings until a consensus was achieved. Team meetings were also used to ensure reflexivity of the researchers (Cohen & Crabtree, 2006). When referencing a particular case study, the state abbreviation (AR = Arkansas; FL = Florida; NJ = New Jersey) is used to identify the origin. Pseudonyms are used to maintain anonymity of individuals.

Results

This study examined the role of support brokers and ways in which they enacted this role that were valued. The results reflect the experiences of participants, caregivers and the support brokers (also called consultants) themselves, as expressed in the narratives. We present the descriptions of these duties and qualities from the point of view of these stakeholders. When these stakeholders shared experiences where these duties were not performed, or not performed in a way these stakeholders appreciated, we also include these findings.

What support brokers do

The first research question explored what support brokers do. Four major categories portray the functions, activities and roles of support brokers described in the case stories: Coaching, Problem Solving, Advocacy, and Monitoring.

Coaching

The coaching role of the support broker included helping participants acquire the skills needed to manage the employer and budget authority aspects of the self-directed program, guiding them to information and resources to meet their needs, and empowering them to think creatively to achieve their own personal goals. Examples were chosen to show the kinds of assistance people needed and how the support broker enacted the coaching role in response.

Acquiring skills for budget authority

Support brokers gave information, guidance and support to participants, their representatives and caregivers as they learned the skills necessary to manage their budgets. The case stories describe support brokers providing information about allowable services and goods, how to set up or revise a budget management plan, monitoring spending, submitting paperwork, and responding to questions or concerns. As one participant stated: “she’s helped me with keeping my budget straight” (FL 11).

Support brokers went beyond sharing information to helping people learn how to manage their budgets. For example, the mother of a participant said:

“Support broker was a great, great help when the program was initiated because she taught [participant] how to do the plan. You have to realize … [participant] had no idea what her employer taxes would be, so Marlene gave her that information and told her the multiplication factor … and how to work within the different categories of that cash management plan… how to balance your checkbook more or less, so she was extremely assistive at that point in time” (NJ 22).

One support broker described the coaching role this way: “we kind of went back and forth as far as figuring out how much (participant) had left in the budget and how many extra hours she could give one of the employees to exhaust the money” (NJ 11). Another stepped in to make sure a participant was using his budget adequately: “you can’t let the money sit here. It looks like you don’t need it” adding “I knew they needed it, but it was just a matter of them coordinating it and getting it going. Once they got it going, things have been fine” (AR 21).

Support brokers also promoted informed decision-making and confidence in managing their budget. As an example, one support broker assisted a participant in understanding the trade-off between what he pays his worker and what remains for other things. This support broker helped the participant acquire skills when he said: “I can give you a figure of the minimum and the maximum, and you decide where in between that range you want to pay (caregiver)” (AR 6). There were also examples of support and encouragement as participants learned their new role in self-direction. As one participant stated: “I was a little afraid at first, it was so complicated, all of the paperwork and all the stuff…she (the consultant) said “no, no, no” and she was right, once you get going it is fine (FL 1).

The need for coaching, although not stated explicitly, was also demonstrated by its absence. For example, a caregiver said, “So I did cheat myself because I been working for almost three weeks and I think I cheated myself on those timesheets. I didn’t know how to do it. I called, but they never called me back” (NJ 21).

Acquiring skills for employer authority

Support brokers provided coaching about hiring care workers, interviewing skills and how to work out problems; although, there were also contrary cases where support brokers did not think this was part of their role. For example, one support broker was quoted as saying: “Well, that’s not my job as a consultant. I do not resolve problems. It is Angela’s responsibility. She is the consumer. She is the employer’ (NJ 9). Another stated, “Our role really is just to help in terms of cash management. You know, helping them out with the paperwork end of it, so it’s not really our place to sort of advise them on their workers” (NJ 9).

In contrast is an exemplar of a support broker coaching a participant hiring a caregiver:

“{The participant} called and wanted me to tell the caregiver what her duties were, so I said, ‘…it’s whatever you need her to do for you. If you need her to give you a bath, if you need her to soak your feet and trim your toenails, you know, you are her boss, so you tell her” (AR 6).

Guiding

In their role as coach, support brokers provided guidance and anticipatory guidance, especially about accessing community resources. As one participant stated, the consultant: “advises me of many things I should know about what would help me, and tries to guide me and steers me in the right direction” (NJ 4). Another was actually guided into the self-directed program: My consultant thought it would be a good idea for us to join the [self-directed program] because it would be a better way of getting supplies and some of the services that [participant] needed” (FL 11).

Guidance also included providing referral information and resources. Participants noted instances when their support broker intervened to help them get equipment like a hospital bed and oxygen (FL 7), resources for assistance paying utility bills (AR 16), or assistive devices such as handrails or raised toilet seats (AR 18). There were also examples of support brokers guiding participants to anticipate their needs. For example:

“I try to get him to see that if you know you have a need, don’t wait until the day you are going to the doctor to call wanting funds to go to the doctor…. Let us know if you need travel money and we can get it to you in a timely manner. Give us some time and we will work with you and do what we can for you” (AR 8).

Anticipatory guidance was also evident in cases where changes in a participant’s budget were expected (e.g. NJ 12; NJ 17; NJ 21), or when planning for the future was a goal. For example, “[Representative]is also working with the consultant to get ramps into her house. She just replaced the ramp into the bathroom. This is especially important because {she} is looking ahead to her son’s adult life” This anticipatory guidance was accepted by the representative who stated, “I am making my house handicap accessible and I am looking at (the) long-term” (FL 24).

Not all support brokers thought about their role in the same way. For example, one support broker was quoted as saying: “What can I do and tell [as a consultant]? I don’t know, I just give recommendations and suggestions and just monitor to see if they’re following and grill them if they don’t. I mean that’s all you can do” (NJ 10).

Problem solving

Participants described the support broker as someone they could call on to help them solve a problem. In some cases, this was framed as a general sense of support, for example, “I like the way that [when] you got a problem you can call and they can come” (AR 24). There were also examples of the support broker intervening with specific problems:

“I guess twice I didn’t get the pay on time, but they corrected that once I spoke to the consultant. She corrected the problem. Like I say, if you have any problems you call her’ (NJ 17).

Another example of problem solving included; “About a month ago, she attempted to purchase something with the savings and they [referring to the agency representative] told her she couldn’t. I called them and we got it cleared up and that was it” (FL 12). In another case, a participant received a notice that her budget was overspent. On investigating, the support broker intervened to correct the mistake. Another support broker described intervening to prevent a problem when a participant’s condition worsened and he could no longer sign timesheets. His support broker explains,

“This particular participant was having difficulty signing his name on a continual basis for the timesheets, so we did discuss appointing him a representative [his father] so that he could have someone sign his name for his mother. (AR 27).

In contrast, there were support brokers who did not see problem solving as part of their role: “Well, that’s not my job as a consultant. I do not resolve problems. It is [participant’s] responsibility. She is the consumer. She is the employer” (NJ 22). Another was quoted as saying:

With consumer-directed care, they are the ones that have to put together the program. If the aide doesn’t show up, they have their back-up and there really isn’t any need to be calling me because it’s their employee” (FL 4).

Advocacy

Support brokers also served as advocates through person-centered assessment and intervention. They took action when modifications were needed or when they identified an unmet need. Examples of advocacy included negotiating additional hours of paid care when there was a change in status of a participant or the informal support network the participant relied on. In so doing, they established themselves as a resource and support. As one participant said, “She’s terrific. She would try every way to help us out” (NJ 16).

One support broker described the case of a participant who was paralyzed and required a ventilator. Although initially approved for 10 hours/week for a paid caregiver the situation changed.

His father is not able to do anything physically for him, but his mom provided a lot of informal help and now she got hurt and she is pretty much bedridden now. So we just did a reassessment on Richard, to up his budget. We are in the process” (FL 6).

In another case advocacy took the form of advocating respite for the caregiver:

“When the consultant visited us she says, ‘You looked frazzled.’ And I said, Well, I haven’t had my mammogram, I haven’t had my yearly appointment’ Besides, I don’t work. If I do go to an appointment then my sister has to stay and then she doesn’t get paid for working because she has to stay home, so we get a double whammy. So the consultant says, ‘What if I can get you like 8 hours (more help) a week? Would that help you?’ That definitely helped!” (FL 2).

In their role as advocates, support brokers helped a participant obtain dentures, intervened for emergency assistance in paying a utility bill and wrote letters of support to reverse a denial of payment for nutritional supplements needed by a participant. As an example of the scope of the role, a support broker described her concern about a participant’s living arrangements: “She basically has a room for her and her children. Where she lives is in terrible condition. She needs her own apartment, but she lacks finances. I have been trying to help her get some subsidized housing” (NJ 10).

There were also contrary cases where the support broker was described as a gatekeeper rather than as an advocate. For example,

“The consultants have different rules. And one consultant may say “Yea, that’s good, we’ll do this under this category,” or whatever and another consultant may say “Well, no, no way. You can’t do that … I mean right now, I have a name of one consultant who is doing really well and really fighting hard for the people that she’s representing. So everybody wants her. You know? Because you can get more stuff. You know what I mean? That’s the bottom line.” (FL 12).

As suggested in the following quote, there were also examples of people needing an advocate or getting lost in the shuffle. “About two months ago she [support broker] told me to ask for more hours; that I needed more hours.. I [still] am waiting. I need more hours” (NJ 2).

Monitoring

Monitoring is a required component of the support broker role with periodic check-ins specified by program policies. How support brokers enacted this role varied across the case stories. In some cases, support brokers expressed confidence that the participant was doing well and did not need more frequent monitoring once they were settled in the program. In other cases, participants described a higher level of involvement in positive terms. For example;

She even calls periodically to see how things are going, you know, to make sure that the worker is getting paid and that everything is being done for him that needs to be done. (NJ 18).

Another echoed this experience:

She is always inquiring of how it is working out and if there are any problems or anything that we can share with her. So we talk frequently on the phone and whenever it is visiting time, she comes here”(FL 15).

In contrast were cases where there was little evidence of monitoring, for example,

“I ain’t seen her in I don’t know when. I don’t know when I have seen her. I ain’t seen her too many times…. she hasn’t been here…. Oh, she has called me once or twice, but it has been a good little while, but she has called me” (AR 10.

How support brokers perform their roles

Research question two asked; “What qualities of the support broker were valued”? Participants and caregivers made numerous references to support broker qualities that they valued. These qualities influenced how the support broker role was perceived, how they enacted their roles, and the overall experience of the program. Most often, the descriptions were positive. However, the value assigned to these qualities was reinforced by negative examples where these qualities were seen as missing. Valued support broker qualities fell into six categories: Familiarity, Supportive Relationship, Proactive Engagement, Responsiveness, Knowledge and Cultural Friendliness.

Familiarity

Participants and caregivers valued a support broker who was closely involved with them, who knew them as a person and understood their values and needs. As one participant described the most important aspect of her relationship with the consultant, “The familiarity with the case, so when I call her, I don’t have to remind her who I am or anything. She is familiar with the case’ (NJ 21). Another highlighted the importance of familiarity by saying: “When you first meet somebody, it is hard to [know], you can read what it says on the paper, but how it affects the person and the person’s mobility can be different things” (NJ 25).

Contrary cases included a support broker who was described as new to the case but remarked, “I don’t know anything about [participant]” (NJ 16) and another who said, “It’s just a matter of just understanding her full disability issues. That’s the only thing that I’m not sure about” (NJ 25). In these cases, the data available in the case stories did not include any follow up statements to describe a plan to become more familiar although this may not have been the narrator’s focus. In another case, the narrator describes a participant who feels that the consultant thinks he is a handicapped person who does not understand the program and she is not trying to understand his point of view and is patronizing him (FL 16). In two further examples, the support brokers seemed to have the impression that they did not need to get to know the self-directing participant. In one of these cases, the counselor knew that the participant was “bed-bound,” but otherwise did not have much specific information to offer about the family. The family received regular monthly phone calls and bi-yearly reassessments, but the counselor was not closely involved in the family’s care arrangements (AR 17). In another case, the support broker knew the representative but had never met the participant (NJ 21).

Supportive relationship

Participants described positive qualities of support brokers as being encouraging, in close communication, supportive and helpful. As one participant said, “She’s the one that does for me, and she’s good” (NJ 5). Another said,

“She’s excellent. She’s great. I like her. She’s very helpful when I need her. When I call the office, if I need to get some personal intimate stuff, I deal with her directly. The whole office helps, her department deals with what you need, but I know her personally. I am more comfortable dealing with her” ((NJ 19).

Support brokers portrayed supportive relationships when they evinced concern for participants, pleasure in working with them, and the value of engendering trust: “You know, so it is just the idea of them knowing that they have someone to call if they have an issue, and that kind of offers a whole lot of support” (NJ 17).

There were a few cases where the relationship with the support broker was “not so good” (FL 10). The following examples depict infrequent or poor communication, perceived lack of respect and seeing the support broker as a roadblock. “Sometimes the counselor will just pop up or call with something that needs to happen the next day” (FL 11). “Waste of time. One more middleman” (FL 12).

Proactive engagement

Proactive engagement was a quality that enabled support brokers to act as advocates. For example, a support broker said,

“I completed his care plan reassessment, and I was particularly concerned because he was only receiving 14 hours per week of personal care that was being paid for. She was working in a fast food restaurant; really struggling to make it, I mean this was just a heart-wrenching situation. This woman has really given up her life to care for her disabled son. I thought that this is a great program to be able to really funnel some money into a family to make it possible for her to provide the optimum care that he needs and deserves, so I requested an increase in hours from 14 to 40 hours” (AR 22).

Proactive engagement also helped to avert problems from occurring. For example,

“I try to make sure in fact that the employees are being paid because if they are not being paid in a timely manner, then they wound up losing their employees and having to start over again. So, as a matter of fact, Mr. Brown was one of my clients who would keep me abreast if their checks were late because you get used to a certain day, so if by Friday it was not there, so you know we would talk about this as far as maybe the weekend and give it to Saturday. But if it is not there on Saturday, then give me a call first thing Monday.” (NJ 17).

In contrast to proactive, there were examples of support brokers acting in a reactive way. As an example, a support broker who was described as having a “professional relationship” with a participant was quoted as saying,

“We really just look at what they are using the money for to make sure that they are not using the cash grant for anything that they shouldn’t be, so you know, there have been things that she has asked about, you know, and I have been able to tell her yes, you can use the money for this or no you can’t use the money for whatever” (NJ 9).

The narratives also included several examples where it seemed that participants were struggling and that proactive engagement may have reduced their struggles. A participant described the situation this way,

“[I receive] 14 hours per week. I wish I had more. I really do because it is more, you know, as I am getting worse and worse. So, that’s life. I will be satisfied with what I got because it is better than what I was getting” (AR 23).

In another case the consultant asked, “Do you need personal care? Can you get out of your bed?” The participant’s response suggested a need for proactive engagement:

“And, yes I can, but I pull up on the walker and then I grab the dresser and then I grab two grab bars, so it’s like, well I can, and I can get my pants on, it’s quite hard, but you lift up one leg. So I thought, well, I can’t really justify personal care yet, but when do they determine it is a need?” (FL 4).

Responsiveness

The quality of responsiveness was prominent in the case stories. Participants valued being able to get timely help when they had questions or problems. For example, a participant stated, “She does wonders. As soon as I call her, she comes and really works to help us” ((FL 8). Another participant echoed this experience: “If I call her, I get a call back. If I ask her a question, if I tell her something, she is right on the phone” (NJ 5).

Participants described responsiveness as including accessibility and action taking. This was illustrated in the following example,

“He seems to know his business and what he is doing. He’s a very nice person. He’s helpful. He’s willing to listen to anything you have to tell him…. He seems to be somebody that’s going to be pretty good. He always calls right back. When I call, he usually calls back the same day … If he doesn’t know about whatever it is, he knows who for me to call to find out” (FL 5).

Timeliness was sometimes an issue. Participants did not necessarily expect an instant response. One participant described often having to leave a message and get a call back because the support brokers “have a lot of cases” and are “kind of booked up” (NJ 1). However, another complained, “If we get a phone call back in three days, we’re lucky” (Consultants are) difficult to get a hold of, to get a return call” (FL 12).

There were even contrary cases where participants found the support broker to be unreachable. For example,

Well, you don’t know how it is to try to call there. It is like trying to call to The White House. You have to leave a message and nobody answers … they say to leave a message to call you back and they don’t return the calls after days (NJ 24).

In another narrative (AR 25), the representative was asked if she had talked to the support broker, as there was an increasing need for more hours and care due to the participant’s health deteriorating. The representative stated she had not, citing trouble getting a response to her calls. The narrator in this case noted that the support broker spends less than an hour a month on the arrangements for this family.

Knowledge

Participants and caregivers relied on the knowledge of the support broker as they transitioned into the self-directed program, acquired skill and confidence with budget and employer authority, and as they navigated finding resources. For example, a representative said,

“I can see where the consultant is necessary, too, because they should be the resource of knowing what transportation companies, what physical therapists, what people are out there that they have used that they would be familiar with (as a resource for families)” (FL 13).

However, the value of support brokers having knowledge of the self-directed program and of resources was most often noted in the case stories by its absence, as shown in the following two examples.

I have educated her more than she has done for me. She can’t answer my questions, had horrible training and she honestly doesn’t know the answers. So she keeps making the comment, “Boy, I’m glad you’re doing this first, because now I know,” and, “Where did you say you found that?” (FL 12).

I would have liked information because sometimes the program changes, sometimes I have to constantly call them [the program staff] to get what I need to know. I try to stay on top of things so I can help them better. New things come about, and sometimes it’s like 2 months have passed before I’m told about it.” (AR 10).

Cultural friendliness

References to cultural friendliness were primarily to language and its impact on communication between and among members of the care team. One way this concept was demonstrated was when support brokers recommended hiring caregivers who spoke the participant’s first language now that they had the ability to choose. This helped improve care, for example, in cases where the participant didn’t speak English or reverted to their native language with the progression of dementia.

The salience of the support broker’s ability to communicate in a culturally friendly way was described, by both its presence and its absence, as having an impact on the experience of self-direction. For example, a Spanish-speaking representative said, “At the beginning I was very frustrated, because I do not speak a lot of English, and I did not understand much” (FL 8). The support broker intervened to explain everything carefully:

For me, being Latin and not knowing a lot of English, it was hard, but I understand a lot more now. There is a consultant who speaks Spanish, I just call her and she helps me… The best thing is that they have somebody who speaks Spanish.”

In contrast are cases that depict a lack of cultural friendliness and its impact. Some related specifically to language. For example, a representative described difficulties understanding program materials that were written only in English and her encounter with the support broker: “well she only speaks English… she came with the application but told me that I must learn to do it by myself” (NJ 12). At the time of this interview, a new support broker who was Spanish speaking had taken over the case.

Other contrary cases reflect communication that was not culturally sensitive to the needs of the participants. A caregiver who worked with three participants said, “…the counselor would call and get them in an uproar, and I’d have to call back. I asked the counselor to call and speak directly to me because a lot of times they don’t understand what she’s saying” (AR 11). In another case, a family described a conflict with their support broker (an “American Lady”) as they expressed a need for additional hours of care for their mother who required total care and could not be left alone. They were told it was not possible as they “were not supposed to be babysitters. “ The caregiver went on to say, “Then, I don’t know what happened. But the problem was resolved. Because the first to come [as a support broker] was a Hispanic lady. She explained everything to us” (NJ 23).

Discussion

The case stories presented here are from 2000 to 2004, he early days of the Cash and Counseling Demonstration of budget authority. But, given that Veterans-directed programs are springing up all over the country, each state has multiple Medicaid State plan and waiver programs, and the model is being adapted for new populations such as those with serious mental illness, hundreds of new self-direction programs get underway each year (Sciegaj et al., 2016), the same lessons need to be learned all over again. The support broker is clearly the most important ally participants have as they start to self-direct. CMS guidelines are quite clear that “The supports broker/consultant acts as an agent of the individual and takes direction from the individual” (Medicaid.gov, n.d.) . The support broker has to learn to coach rather than direct, and to avoid the twin extremes of leaving the participant to fend for him or herself versus being too controlling. The person in this role not only has to help the participant learn to utilize and manage their budget, they need to help the participant understand and access other community resources available from other funding sources. In the end, the support broker becomes a vehicle of empowerment – going beyond the mechanics of the program to encourage participants to think creatively about their own goals, freeing the participant to increase their own independence, safety and quality of life. That is why this role is such a natural for social workers who come from the tradition of empowering people pioneered by Jane Addams at settlementHull House in Chicago.

By listening to participants and their caregivers, the listener gets a unique perspective on the functions and valued qualities of a support broker. Starting with the functions, roles and activities, the themes that emerged from participants were Coaching, Problem Solving, Advocacy, and Monitoring. All of these themes focus on the practical purposes or goals the participant, caregiver or support broker is trying to achieve rather than the regulatory orientation found in previous studies which started with the state’s perspective or the support broker’s perspective on the tasks states thought they should be performing. More explicitly, studies like Jeon et al. (2015) focus on the tasks of providing participants with information about self-direction, informing participants of their rights and responsibilities, documentation and record keeping, developing a spending plan, and reporting critical incidents that may affect safety. Other tasks mentioned by Jeon et al. were training participants to hire, manage and terminate personally hired workers, and meeting state requirements for employers. What we gain by looking at this question of tasks and roles from the consumer side is a focus on the end results rather than on discrete regulatory requirements. Participants in our study mentioned other problems such as finding workers or dealing with behavioral issues or getting their workers paid where support broker intervention extended beyond regulatory tasks, but, in the end, participants knew what they valued, and they were glad to tell their stories. As exemplified in the first two tasks, coaching and problem solving, participants and their caregivers valued support brokers who taught them skills and pointed them toward resources.

But it is not just what support brokers do; it is HOW they do it that seems to matter to participants and their caregivers. That is perhaps the most significant contribution of this paper. Participants also told us what they did not find helpful; this is just as important. Again, to be more specific, the respondents in this study focused on Familiarity, Supportive Relationships, Proactive Engagement, Responsiveness, Knowledge and Cultural Friendliness while accenting how important it was for the support broker to act and react in a way that engages them and their caregivers in their own language showing understanding of their particular culture and environment. This information is new and, except for the obvious connection between Advocacy and Being Proactive, these desired qualities apply to all of the tasks listed above. Some of these findings remind us of points we heard in our literature review. Leutz and Capitman (2007) finding that knowing the case manager’s name matters, and Meng’s (2009) conclusions that knowledge, such as how to integrate long-term services and supports with the acute care system makes a difference, resonate with some of the qualities participants valued in our study.

It is important to hear what people don’t like. Based on these case stories, participants don’t like support that is distant, appears unconcerned or uninvolved, is not based on a relationship, and is reactive at best. A support broker who does not know their job or does not have a good grasp of community resources is clearly a liability. Requirements regarding support broker knowledge skills and training can easily be built into state job descriptions. Cultural Friendliness is a new term we have drawn on to capture not only having someone you can truly communicate with, but having someone who goes out of their way to understand the context in which the participant lives. In the end, having examples, in participants’ own words, can be very helpful in the training of future workers.

This article then serves as a bridge to several other articles in this special issue. Most clearly, it provides guidance for BSW and MSW training programs such as those discussed in the final article, “The Times They Are A’Changin”. This article adds to the resources for schools of social work showing the way support brokers perform they jobs is as important or perhaps more important that knowing how to perform the task itself.

Finally, as mentioned in our literature review, these findings are the beginning of a quality framework for continuous quality improvement. In the example of developing quality indicators alluded to our literature review (Olin et al., 2014) the work begins by ascertaining what the key stakeholders view as critical. This study shows what participants and their caregivers see as the main tasks, and the “how attributes” they articulated can be helpful in developing measures of quality. Whereas the work of Olin et al. is focused on peer family support working with children with serious psychiatric conditions in New York, it is not surprising that a number of their criteria echo what our participants said. The next research steps would be ascertaining the views of other key stakeholders, establishing consensus and pre-testing.

Additional implications for social workers

The importance of involving participants in the design, implementation and ongoing evaluation of programs and practices is slowly gaining credence. Studies such as this one show why. Our findings echo results from the work of Erin McGaffigan (2011) where one key informant concluded, “not only ask [members of the Stakeholder Group] what they want, but truly listen. I think that‘s really helped us have trust. I think that has been really a key to our success.”

On the research side, our results are also in sync with Leading Age’s new Bureau of Sages Program where the first phase of research showed that “ Older adults in the room were concerned with very real, day-to-day issues like how they function in the world, how they can get where they need to go, and how they can do what they want to do. But none of the sages felt that clinicians and researchers were focusing on those issues.”

Limitations

This paper acknowledges that the findings reflect data that were not collected with the intent to answer the questions posed in this study. Although the sample was selected to be representative of the population enrolled in the three participant-directed programs, the interviews used for this analysis are limited to the participants’ responses at a single point-in-time that occurred during the course of the 1st year of the Cash & Counseling program. Consequently, it is not known how the perceptions’ of the support brokers’ role might have changed over time. Given that the aim of this study was to understand the participant/representative and caregiver perceptions of the support broker, it was determined that the limited interviews with the support broker or counselor does not limit the findings This study is the first of its kind trying to understand participant and caregiver perceptions’ of the support broker or counselor in participant-directed programs.

Conclusion

The self-direction option has gone through the efficacy and effectiveness phases. We are now in a stage where the most important research (according to the Glasgow RE-AIM framework 1999) focuses on implementation. This paper provides important ideas and insights from the participants themselves; feedback that can play a vital role in training support brokers and beginning to construct a quality framework. These interviews also show whole areas where past training has not placed emphasis, such as integration of long terms supports and services with financial, health, housing and other domains important in the lives of participants and their families.