My name is T.L. and I have been part of the Advocates program for over five years. For six months, I was part of a shared house at xxxx Framingham, and then I got my own apartment. My program is residential support. During this time, I have had four residential support counselors. (D.D., J.H., G.S., and H.D.). I have been committed to two mental health hospitals, Metropolitan State Hospital and Westboro Sate Hospital, for six months each. The first was in 1983, and the second was in 1991. I have also been hospitalized four additional times, ranging from a few days to a month, at different times in the past 15 years as well. My diagnosis is paranoid schizophrenia, but, fortunately, my condition is well-controlled by Zyprexa, 15 mg/day.

My observation is that most support workers and their direct supervisors in residential support are more optimistic and enthusiastic than people in general. As far as I have been able to tell, this personality trait is not written or required as part of the job description, but I think it’s important in helping clients/consumers achieve positive results, goals, and accomplishments. When I discussed this with a recent social work supervisor (D.L.), she said that a lot of this cheerfulness and optimism comes from social work training. That is, social workers are taught to help others see a glass as “half full”. instead of “half empty”, and that this is important in helping clients attain goals and make progress. However, the support workers that I have had, and I suspect most others I know, generally have not had any formal social work training like this. They just seem to be very optimistic and cheerful. This attitude also leads to patience to speak calmly when a client might be acting abusive or emotionally, for example, or when a consumer might seem to seek excessive attention.

Although I do not personally have the problem, I think these attitudes are most important for helping clients in the Advocates program with substance abuse and alcoholism. I do not think I would have the patience to work with such consumers because of the problems with relapse, and because it seems to me that in order to be successful, a lot of other things in the client’s life have to be working out well, such as constructive, productive, meaningful use of one’s time, family support, and a social support system of friends and/or acquaintances. Even working with consumers having “only” a mental illness is to work with someone who has a similar kind of chronic condition. The psychiatric medications are necessary for continued good functioning and stability, and Advocates workers are helpful in helping someone stay on track and continue taking them.

One would think a background in psychology would be a necessary requirement, yet some support workers do not have this, but rather these traits of optimism and patience. As a result, they do well, and are helpful to clients. I think these necessary traits are something you either have or don’t have, whereas you can get some psychology or psychiatric training on-the-job or through courses. I admire direct care workers’ ability to deal with, and somehow constructively assist, so many clients with a wide variety of mental illnesses and conditions (including substance abuse), and of different ages and backgrounds. I admire their ability to handle emotional scenes and situations.

Direct-care work is much more than babysitting because 1) the clients are adults, with adult lives and adult issues; and 2) clients with mental illness, even with medications, can still be in a less than optimal functional state. They may have distorted ideas or delusions. An important way a support worker can help,as I mentioned, is to help a consumer continue with medications. When I was in Westboro State Hospital, one of the attendants (N.D.) frequently told us patients that, after a patient has been on medications for awhile and is doing well, they think, “Hey! I feel great! I don’t need this medication!” There were three times I’ve stopped taking my medication for this reason, and each time, I became so dysfunctional, I had to be hospitalized. It’s taken me a long time to realize that the medication is necessary for thinking normally.

Sometimes, I remember the specific nonsensical thoughts and wrong ideas I had when I was not taking my medication, and I can remember swearing that that was reality! A support worker can help a client recognize disordered thinking or behavior and/or help manage a situation when things get out of control. D.D. was very helpful, and a calming influence, when I stopped taking my medication and was out of control, and there were several police at my apartment to help get me into the ambulance and restrained. He was helpful in maintaining my apartment when I was hospitalized, and keeping in touch with him frequently on the phone helped keep me “connected” with the outside world.

I’ve seen that support workers also help clients manage their finances, lend a listening ear, and help with household tasks such as cleaning, or even cooking. But just listing things they do does not indicate that often, workers go the extra mile when they do not have to. I can remember my first worker (D.D. taking extra time to just walk with a client (S.N., at an Advocates summer cookout), or just going out with me for coffee in downtown Framingham. D.D. also got me interested in classical music, which he was always playing when driving me around. One of the problems I have is that I can get emotionally carried away and a little manic, and classical music has often proven to be a constructive way of channeling this tendency.

The psychiatric medications can also have undesired or unwanted side effects, which can pose a dilemma for the client. Do they continue taking the medication to control their psychiatric symptoms, or stop taking the meds because the side effects are so bad? Some side effects can be excessive weight gain, sexual dysfunction, uncontrollable motor movements, and physical symptoms. A direct care worker can be helpful to a consumer, because if he knows the side effects might be embarrassing or personal, and the presence of a support worker who is alert for possible side effects can be most helpful-not just in recognizing and discussing the side effects with the client himself, but possibly also in communicating with the client’s doctor, so that appropriate adjustments or changes in medications may be made. I personally had a sexual dysfunction side effect when I was released from Charles River Hospital, and a worker at the-then Marlboro Respite (don’t remember his name) was helpful to me in encouraging me to talk about this embarrassing problem, documenting it, and encouraging me to talk to my psychiatrist about getting my meds changed.

For these reasons, I think a direct-care worker needs more sensitivity than a baby-sitter, or even a manager. While a manager in a company generally might make decisions that have a direct impact on others’ lives (his underlings), and thus has to proceed carefully and considerately, a support worker can sometimes be in even more heightened “bull in a china shop” situations. My impression is that sometimes clients’ states of mind might be emotional, their ideas or thoughts fragile. Speaking for myself, sometimes I am sensitive to relatively minor things. Advocates workers also help consumers achieve goals and maximize potentials, sometimes by actively helping them get organized, and other times just by being supportive. One client (R.S., xxxxxx St.) once commented that he felt it would be helpful for mental health clients to associate with others OUTSIDE the mental health system, in order to have and develop contact with the normal world. I have found this most helpful, and is another way the Advocates worker benefits the client.

I have benefited from an Advocates support worker (J.H.) who persisted for a couple of years in insisting that I get a dental checkup. I had let my dental care go neglected for several years, and largely because of her, I have been able to get good dental treatment in time to avert some serious problems.

But while I think it’s important for mental health clients to develop relationships with people outside the mental health system, Advocates as an organization also is helpful in providing a sense of group and community, and not just by providing and operating group homes. The annual Advocates art show at the public library is helpful in showing the creative side of consumers. Annual parties and cookouts are fun occasions, and so are recreational outings, though there have not been any in awhile. Small groups of us have gone to museums, the zoo, amusement parks, bowling, golfing, and movies.
I think a support worker needs to devote much more time and commitment to a client than any baby-sitter would, in order to help a client make and show progress in his/her life. I know it takes a long time for me. And because clients often receive and/or make enough money only for the necessities and just get by, imagination and creativity on the part of the support worker can be very helpful.

I think the kind of general support that I have been describing, along with psychotherapy sometimes, is absolutely necessary for a client to progress and do well, in addition to taking medications. I think the idea of mentally ill patients living in the community, if they are able, is better than hospitalization. Not all mentally ill patients need the intense supervision of a psychiatric hospital ward, nor even psychotherapy. Thus, it’s cheaper for a mental health patient to live in the community if he/she can-but someone must be there to help, too. Some have friends or family members, but not all do. Support workers and direct care workers fill this role. And some of the activities that Advocates has run are the same kinds of recreational outings and groups in psychiatric hospitals. The support workers are someone there to help a mental health client manage in the larger society, as opposed to just releasing a patient without any help at all.

Personally, I much prefer the decreased supervision from the hospital, and the fact that I have the freedom to come and go as I please, rather than being kept on a locked unit. It has taken me a very, very long time to get over feeling bitter about being locked up. Even though I needed psychiatric treatment, for a very long time, I felt as if I had actually been jailed or imprisoned. Some patients NEVER get over being locked up, and thus, never learn to manage themselves appropriately well enough to justify their being released by hospital staff. I was fortunate enough to meet a couple of patients (D.S., R.C.) who explained to me that it was in my best interests (to get discharged from hospitals) to cooperate and participate in all the therapeutic programs given, so as to get “good marks” by the hospital staff. So I participated as much as possible in hospital programs, but cynically so, just to get good reviews so I would be discharged. But, once discharged and released, I was left without support. Only when I became part of the Advocates program did I learn, slowly, to appreciate doing constructive and productive things on my own for their own value. The various Advocates outings, parties and events have been very helpful in this way.

Once I had a discussion with one of my support workers (D.D.) At the time, which was four years ago, I guess I felt he was poking his nose in my business once too often. he remarked that other clients have similarly felt that their workers were “intrusive”. But then he asked me if I knew WHY they were so. When I said no, he started to explain many of these ideas to me, which became clearer to me as time went on. On balance and in retrospect, I think a direct-care worker sometimes does have to be nosy in order to be constructive and helpful.

Another reason I think support workers are helpful is that mental health patients are sometimes not as well-educated as they are. This is important when, as was with the case with me in some ways, I had some ideas that were just wrong, strange and weird. Although I’ve personally overcome a lot of these ideas through self-education, I think the presence of the more-educated support worker can be helpful.

I’ve talked about what it’s like being a support worker with some of the support workers, and one of them (L.T.) said it’s not for everybody. I think it requires patience, persistence, and fortitude at times, in addition to the cheerful and optimistic personality I mentioned at the beginning. I haven’t specifically asked about what they find rewarding about it, but I would guess that it would be simply making a significant difference and improvement, through one’s personal efforts, in a personal way in a client’s life, one client at a time. I can think of ways I’ve made a difference in others’ lives in small ways, and I would guess that what a support worker does can make a bigger difference in a mental health client’s making it successfully in the larger world and society.

- T.L.