Representative Payee Programs for Persons With Mental Illness in Illinois

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PSYCHIATRIC SERVICES 1

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ersons with severe mental ill-ness often have difficulties managing their government disability payments. A lack of finan-cial skills can cause problems in budg-eting for necessities. Also, disability payments, such as Supplemental Se-curity Income (SSI), provide a level of income that is below the poverty line (1). The primary function of rep-resentative payeeship is to help peo-ple meet their basic living needs—for example, ensuring that disability pay-ments are used for rent.

The risk of homelessness among persons with severe mental illness is 25 to 50 percent, which is ten to 20 times higher than in the general pop-ulation (2). An extensive review of 75 case management studies revealed that both assertive community treat-ment and intensive case managetreat-ment improved community tenure by in-creasing housing stability and de-creasing hospital use (3). Stoner (4) studied 98 persons with mental illness who were homeless and who were en-rolled in a representative payee pro-gram. After one year, 77 percent of these individuals reported zero days of homelessness. Although represen-tative payee services are often provid-ed as part of assertive community treatment programs, these studies rarely show the proportion of patients in the program who are receiving rep-resentative payee services.

The Pathways to Housing program provides further evidence of the role of representative payee programs in reducing homelessness (5). In this

Representative Payee Programs for

Persons With Mental Illness in Illinois

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Dr. Hanrahan, Dr. Luchins, Ms. Savage, and Ms. Patrick are affiliated with the

de-partment of psychiatry of the University of Chicago and with the Illinois Office of Men-tal Health. Mr. Roberts is with the department of psychiatry of the University of go. Dr. Conrad is with the School of Public Health of the University of Illinois at Chica-go. Send correspondence to Dr. Hanrahan at the University of Chicago, Department of Psychiatry, MC3077, 5841 South Maryland Avenue, Chicago, Illinois 60637 (e-mail, phanrahan@yoda.bsd.uchicago.edu). A version of this paper was presented at the Insti-tute on Psychiatric Services held October 29 to November 2, 1999, in New Orleans and at the Annual Conference of the American Public Health Association held November 7–11, 1999, in Chicago.

Objective: Representative payee programs can improve the community tenure of persons with mental illness by ensuring that their basic needs, such as housing, are met. The authors conducted a survey to assess the extent to which representative payee programs are provided by com-munity mental health centers and the criteria used in enrolling clients in these services. Methods: Community mental health centers under contract to the Illinois Department of Human Services participated in a census survey. Survey questions concerned provision of representative payee programs, service characteristics, and criteria for enrollment in the programs. Results: Representative payee programs were directly provided by 59 percent of the 95 community mental health centers in the sample. More than a third of clients who were receiving intensive services had a representative payee. More than three times as many such clients had a representative payee when agencies provided repre-sentative payee programs directly rather than through referrals of fam-ily members. Frequently cited criteria for enrollment in a representa-tive payee program included a lack of financial skills (89 percent), a lack of rent money (52 percent), substance abuse (50 percent), homelessness (33 percent), and frequent (37 percent) or long-term (30 percent) hos-pitalization. The majority of the representative payee programs (76 percent) provided this service to clients who received representative payee services under the mandate of the Social Security Administration. Conclusions: Given the high proportion of clients of agencies that di-rectly provided representative payee services who were assigned to a representative payee, all community mental health centers that provide intensive services should also directly provide representative payee services in order to improve access to representative payee services. (Psychiatric Services 53:190–194, 2002)

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program, representative payee servic-es were combined with assertive com-munity treatment for persons in New York City who were homeless and who had dual diagnoses. Consumers were offered their choice of afford-able housing with only two require-ments: participation in a representa-tive payee program and participation in meetings at least twice a month with an assertive community treat-ment team. In a quasi-experitreat-mental comparison, 88 percent of the pro-gram’s consumers remained housed, compared with 47 percent of those who received usual services (6).

These findings were recently repli-cated in a controlled study in which participants were randomly assigned to the Pathways to Housing program or to usual housing services (7). The results of these studies strongly sug-gest that representative payee servic-es are an effective component in the treatment of persons who are home-less, especially when combined with assertive community treatment and a respect for consumers’ housing pref-erences. However, when the goal is prevention of homelessness among persons who are at risk of residential instability, other ways of guaranteeing access to housing may be as effective as representative payee programs (8). The effects of representative payee services on mental health are best thought of as secondary, because these services treat psychiatric dis-ability indirectly. For example, by helping people retain housing, repre-sentative payee programs may help decrease victimization and other as-pects of homelessness that would ex-acerbate symptoms. The effect of these services on hospitalization rates is a concrete indicator of their effect on mental health. In a retrospective study of persons with mental illness who received representative payee services, we found a ninefold de-crease in the number of days clients spent in state hospitals, from 68 at baseline to seven in the year that a representative payee was provided (p<.001) (9).

Other benefits to clients include greater cooperation with treatment and lower rates of arrest and victim-ization (4). Also, although client satis-faction with representative payee

services may initially be low, it is like-ly to grow over time (10).

Thus representative payee pro-grams seem to provide important benefits to clients. However, only one survey—in the state of Washington— has examined the nature of these pro-grams and the extent to which they are provided in the community (11). Also, guidelines are needed for decid-ing which clients really need a repre-sentative payee. Because this service can play such an important role, we conducted a survey to assess the ex-tent to which representative payee programs were provided in Illinois, the characteristics of these programs, and the criteria used for enrolling clients in the programs.

Methods

Between 1997 and 1999, we conduct-ed a mail survey of all 219 mental health service programs that were un-der contract to the Illinois Depart-ment of Human Services in 1996. The surveys were addressed to the direc-tors of the programs, with a request that they be forwarded to the staff who were most knowledgeable about representative payee services. After a follow-up telephone survey, 57 pro-grams were excluded because they were not mental health centers that provided direct service in the

com-munity, were not serving adults with mental illness, or were duplicates of listed programs. The 162 remaining community mental health centers had programs that served persons with mental illness as well as develop-mentally delayed persons, programs whose primary service population was individuals with mental illness, and four programs whose service popula-tion could not be determined.

Of the 158 community mental health centers whose client population included persons with mental illness, 111 (70 percent) responded to the sur-vey. Because the focus of the study was provision of services for individuals with mental illness, a subgroup of pro-grams that served a substantial propor-tion of persons with mental illness was selected. Programs were selected for further analysis if 25 percent or more of their clients had a mental illness. Within this group of 141 agencies, 95 (67 percent) responded.

Survey questions concerned wheth-er representative payee swheth-ervices wwheth-ere provided directly by the agency, the proportion of clients served, the char-acteristics of the representative payee program, and what type of staff pro-vided the service. Respondents were also asked to indicate what criteria the agency used to determine which clients should receive representative payee services. A checklist was pro-vided for this question, based on find-ings from a chart review in our earlier study (9). Because of the high inci-dence of comorbid substance de-pendence among persons with severe mental illness, additional questions were asked about the role of the rep-resentative payee in dealing with sub-stance use problems (12,13).

The respondents were asked about the extent to which payees linked clients’ access to discretionary funds to substance use, treatment adherence, money management skills, and func-tional level. As in an earlier survey (11), possible responses ranged from 1, not at all linked, to 5, linked to a high de-gree. Respondents were asked what the representative payee did if the client was using substances to the point of abuse or dependence. Possible an-swers to this question were “take no ac-tion” and “reduce access to discre-tionary money.” PSYCHIATRIC SERVICES 119911

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homelessness that

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Means and frequency distributions were used to describe the characteris-tics of representative payee service provision; t tests were used to exam-ine the differences between agencies that provided representative payee services directly and those that relied on family members and referrals for representative payee services, partic-ularly for services to clients who were receiving intensive treatment. The statistical package SPSS 10 was used for the analyses (14).

Results

Representative payee services were directly provided by 56 (59 percent) of the 95 community mental health centers at which at least 25 percent of the service population had a mental illness. Clinicians functioned as rep-resentative payees in a majority of the programs (43 programs, or 76 per-cent). Seventeen (30 percent) of the centers that provided representative payee services used a centralized sys-tem of tracking and disbursing clients’ funds. Funds were also dis-tributed by caseworkers (28 pro-grams, or 50 percent) or treatment teams (17 programs, or 30 percent) and occasionally through the mail (15 programs, or 27 percent). Agencies that provided representative payee services directly did not differ from

other agencies in structural factors, such as the size of their intensive treatment program.

Because we believed that clients who were receiving intensive treat-ment services were most in need of representative payee services, we asked the staff of the community mental health centers how many of these clients they served. Intensive services were described as including, for example, assertive community treatment, supportive housing, or res-idential extended care. The mean± SD number of clients who received intensive treatment was 82±183. More than a third (36 percent) of the clients who received intensive servic-es had some form of reprservic-esentative payee.

However, among mental health centers that provided representative payee services directly, clients who were receiving intensive treatment were more than three times as likely to have a representative payee as clients of centers that relied on friends and family members or used referrals for this service (47 percent compared with 14 percent, t=4.525, df=56, p< .001). The majority of the agencies (76 percent) reported that clients who re-ceived representative payee services did so under the mandate of the Social Security Administration (SSA).

Respondents were asked to de-scribe their criteria for determining which clients should receive represen-tative payee services; their responses are summarized in Table 1. Problems in managing community living were the most frequently mentioned crite-ria—lack of financial skills, lack of rent money, and substance abuse or de-pendence. Other important factors in-cluded requirements by government agencies, such as the SSA or a state agency, and extensive hospital use. Psychiatric diagnosis was rated as far less important than functional impair-ment—only a tenth of the respon-dents reported that a diagnosis of schizophrenia was considered when clients were enrolled in representative payee programs.

Representative payee services were characterized by active involvement in helping the client with daily needs. Among the agencies that acted as rep-resentative payees, all enrolled the client in the representative payee program, developed the client’s bud-get, and paid rent and other bills di-rectly. Most agencies also assessed the client for representative payee services (51 agencies, or 93 percent) and helped with grocery shopping (52 agencies, or 98 percent) and trans-portation (42 agencies, or 89 per-cent). Counseling on money manage-ment was a key component of the representative payee programs of all the agencies. Perhaps as a conse-quence of these counseling efforts, the agencies reported that relatively few clients (21 percent) had disagree-ments with the payee about the client’s money.

An important issue concerns the extent to which various client charteristics were linked with clients’ ac-cess to discretionary funds—that is, funds that remained after expenses for necessities had been paid. As shown in Table 2, payees were most likely to grant greater access to dis-cretionary funds to clients who had higher levels of functioning, particu-larly those with better money man-agement skills. Most payees (32 pro-grams, or 71 percent) made access to funds at least moderately contingent on improvements in substance use problems. Twenty-nine (62 percent) of the representative payee programs PSYCHIATRIC SERVICES

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Criteria used by community mental health centers for enrolling clients in repre-sentative payee programsa

Criterion N %

Problems in community living

Lack of financial skills 48 89

Lack of money for rent 28 52

Substance abuse or dependence 27 50

Homelessness in previous 12 months 18 33

Federal or state requirements

Required by Social Security Administration 37b 76

Required by state agency 11b 22

Extensive hospital use 36 67

Frequent hospitalizations 20 37

Long-term hospitalizations 16 30

Receiving entitlements

Supplemental Security Income recipient 11b 22

Medicaid beneficiary 6b 12

Diagnosis of schizophrenia 5b 10

Other 11 20

aOf the 56 agencies with representative payee programs, 54 responded to most of the questions.

Questions for which the number of missing responses was relatively high are noted.

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reduced access to discretionary mon-ey when clients were using sub-stances to the point of abuse or de-pendence. Although access to funds was not as often contingent on adher-ence to treatment, it was at least mod-erately linked by more than half of the representative payee programs (26 programs, or 55 percent).

Discussion

Although a majority of the communi-ty mental health centers in Illinois provided representative payee servic-es, a substantial proportion (41 per-cent) did not. Also, relatively few clients who received intensive servic-es had some form of reprservic-esentative payee (36 percent), yet such clients are likely to have a strong need for help in managing their money be-cause of the severity of their disabili-ties. The proportion of these clients who received representative payee services was more than three times higher (48 percent compared with 14 percent) when the agency provided representative payee services directly. Research suggests that representa-tive payee programs are beneficial to clients. Thus it is puzzling that more agencies do not provide this service for clients who have serious mental illness. There are several possible rea-sons for this apparent service gap. Agencies and clinicians may prefer that clients choose a representative payee from their family or other members of their informal support network. Other possible reasons are ambivalence about mandating repre-sentative payee services and concerns about conflicts in the therapeutic re-lationship (15).

For persons with physical disabili-ties, family members are appointed as representative payees in the vast ma-jority of cases (85 percent) (16). How-ever, it is generally more difficult to find appropriate and responsible fam-ily members to act as representative payees for adults with mental illness than it is for adults with other types of disabilities. This difficulty is due to several factors, including disconnec-tion from the family in this populadisconnec-tion and occasional misuse or theft of the clients’ money by family representa-tive payees. Some clients can be abu-sive and even violent toward family

members over issues such as use of disability payments to buy drugs.

To address these problems, Con-gress and the Social Security Admin-istration have worked in recent years to broaden the range of noncustodial agencies that can act as representa-tive payees, including community mental health centers (17). Ideally, the selection of a representative pay-ee coincides with the client’s prefer-ence. However, when no appropriate representative payee can be found in the client’s informal support network, it is important for agency payees to be available.

In our survey, a majority of repre-sentative payee programs (76 per-cent) provided this service to clients who received representative payee services under the mandate of SSA. However, we previously found that even when SSA mandated 80 percent of clients to representative payees, cli-nicians believed that most clients had chosen the service voluntarily (9). This misconception may have been due to ambivalence among clinicians about the ethics of working with clients who have reduced autonomy. As we have noted, there is a growing body of evi-dence that representative payee pro-grams are beneficial to clients. Benefi-cence and autonomy are the two core principles underlying ethical judg-ments (9). If persons with severe dis-abilities are at risk of harm as a result of their inability to use disability pay-ments to meet their basic needs, the ethical obligation to protect a client’s welfare may override the client’s right to self-determination (18).

Fear of introducing conflicts into the therapeutic relationship may also account for case managers’

reluc-tance to endorse and provide mandat-ed representative payee services. Re-spondents to our survey reported that disagreements about money manage-ment occurred between payees and about a fifth of their clients.

In a related finding in another study, about the same proportion of case managers reported that serving the representative payee function dis-rupted the therapeutic relationship (10). In that study, a minority of cli-ents (20 percent) affirmed the state-ment “I can’t talk to my therapist about my feelings because he or she controls my funds.” However, most clients reported that the positive ef-fects of having a representative payee included helping them make their money last all month (88 percent), learn budgeting skills (80 percent), maintain their housing (78 percent), and control their drug or alcohol abuse (80 percent). The authors con-cluded that, overall, having case man-agers act as representative payees does not appear to seriously disrupt the therapeutic relationship.

Obviously the decision to mandate representative payee services should not be made lightly. The results of our survey suggested indicators for refer-ral to a representative payee program, including deficits in skills that are es-sential to community living, such as fi-nancial skills and the ability to budget for rent money; substance abuse or dependence; homelessness; and fre-quent or long-term hospitalization. Mandates by SSA and state agencies were also found to be an important in-fluence on the provision of represen-tative payee services. To the extent that SSA required that clients meet specific criteria for such mandates,

PSYCHIATRIC SERVICES 119933

T Taabbllee 22

Agency ratings of the extent to which the representative payee program links client characteristics and access to discretionary funds

Degree of link (%)

Client characteristicsa 1 (none) 2 3 (moderate) 4 5 (high)

Money management skills 14 6 20 28 32

Functional level 16 8 24 22 30

Substance abuse 20 9 20 20 31

Treatment adherence 25 21 21 17 17

aMean±SD scores were 3.7±1.4 for money management skills, 3.4±1.4 for functional level, 3.3±1.5

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there is an overlap between SSA crite-ria and these indicators. The Illinois Office of Mental Health also influ-enced agency programs by requiring that representative payee services be available for clients receiving assertive community treatment. Finally, consis-tent with SSA guidelines, relatively few agencies relied on diagnostic cri-teria, which stress functional impair-ment over diagnosis.

Similar indicators of the need for a representative payee were found in a chart review of clients who were re-ceiving representative payee services (9). In another study, clients of a rep-resentative payee program were com-pared with clients from the same agency who were not referred to the representative payee program (19). Again, factors associated with referral included lack of rent money, lack of financial skills, homelessness, and ex-tensive hospital use. Persons with se-vere and persistent mental illness were also more likely to be referred to representative payee services. Sur-prisingly, those who were referred were as likely as those who were not referred to have problems with sub-stance abuse or dependence, which suggests a need to more closely exam-ine factors such as the severity of the substance use problem.

Rosen and Rosenheck (20) pro-posed that a representative payee is indicated if substance use is severe enough to cause “clinically significant impairment or distress” and if it is the cause of “substantial harm to the re-cipient, victimization of the rere-cipient, or unavailability of funds to meet ba-sic needs.” As in the survey in Wash-ington State (11), our survey showed frequent use of contingency manage-ment, such as linking access to discre-tionary funds to the client’s willing-ness to deal with substance use prob-lems. Although the effectiveness of contingency management has been examined among persons with sub-stance use problems (21), there is lit-tle evidence of the effectiveness of this method among persons who are also mentally ill (22).

Conclusions

The results of our survey suggest that the use of representative payee ser-vices is low when community

agen-cies are not available to provide these services directly for their clients. Yet it appears that representative payee services are an essential component of effective programs for clients who need intensive services. It could be argued that to increase access to rep-resentative payee services, all com-munity mental health centers that provide intensive services should also directly provide representative payee services. Despite difficulties in devel-oping and maintaining a representa-tive payee program, such programs should be part of the array of services available for persons who have seri-ous mental illness.

Another important factor is that for a majority of the representative payee clients in Illinois these services are mandated by federal and state regula-tions, which suggests that a reduction in autonomy occurs frequently in this population. Finally, additional work is needed to clarify clinical criteria for qualifying for representative payee services as a result of substance abuse. ♦

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