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Problems Faced By Consumers Of Mental Health Services Out In A Frontier CommunityLetter to the Field No. 23By Courtenay M. Harding, Ph.D.; Mary Van Pelt, BA, MHW; and James A. Ciarlo, Ph.D. Table of Contents IntroductionMost people think that the frontier is somewhere up in Alaska. In reality, however, 1% of the U.S. population lives in 45% of the total U.S. landmass (Popper, 1986). In our western frontier areas with less than 7 people per square mile (Ciarlo, Wackwitz, Wagenfeld, Mohatt & Zelarney, 1996), "… healthcare, education, religion, politics, law and order, transportation, communication, sense of community, sense of self, even the act of finding a mate—virtually every human institution and activity demonstrates the impact of a few people and long miles." (Duncan, 1993). To compound all of these problems with serious and persistent mental illness is nearly unthinkable. Yet frontier is home to only a slightly smaller proportion of residents having a wide variety of mental health problems and service needs than are urban areas; and even worse, it is approximately equal to urban areas in proportion of population with the more severe, dysfunction-linked disorders (Ciarlo, 1999). Add poverty, chronic provider shortages, a disproportional number of uninsured, and huge distances and it is a sheer wonder that anyone finds treatment in the frontier (Beeson & Mohatt, 1993; GAO, 1993; Geller, 1998). Both the formal and fugitive literature now abounds with articles by consumers of mental health services about coping with stigma, feelings of isolation, lack of relevant services, and the trauma of having a serious mental illness. Also to be considered are the emerging recovery paradigm, the role of work, the importance of hope, and self-control of psychotic mechanisms (e.g., Deegan, 1988; Leete, 1989; Lovejoy, 1982; Unzicker, 1989). However, there is little known literature from frontier consumers on such issues or even about how to receive services there. In addition, more needs to be known about living with the compounding problems of frontier life (distances, lack of transportation, lack of caregiver choice, overlapping roles in the community, lack of any anonymity, lack of peer consumer groups, and scarcity of work opportunities). Profile of the Service AreaTo talk about these problems and gather more information, a focus group was held with seven clients and two case managers (both of whom were also consumers) in a frontier area of a Western state. The case managers used two vans and drove a total of 346 miles round trip to bring these consumers to a centralized town. The town had a population of 800 and was located in a county of 3,190 people. This was a farming and ranching county with a large mountain range nearby and only 2.6 people per square mile. Hispanics numbered 79% and had a long, illustrious history of Spanish occupation prior to U.S. statehood. The nearest mental health center and small general hospital with a psychiatric bed was 42 miles away from the community in which the focus group was held, and the closest state hospital was 120 miles. The mental health center had served the area since 1972 and had entered into a partnership 3 years ago with one of the nation’s largest managed care organizations. The town, where the meeting was held, had a small medical clinic, three restaurants, and a small historical museum. Main Street was five blocks long. The meeting was conducted in a building that used to be a small convent adjacent to the church, but was now converted to a small, pleasant, church-run bed and breakfast inn (B & B). Description of the Focus GroupThe consumers all had serious and persistent mental illnesses such as bipolar disorder, schizophrenia, and major depressions. Some participants also suffered from combinations of substance abuse, other medical diagnoses, and personality disorders. Altogether, there were 2 males and 9 females contributing to the discussion with an average age of 40 years. The session was held in the living room of the B & B. It was such an amiable atmosphere that the participants wished out loud that they could meet at the B & B for their weekly group meetings as well. (The group did reserve the room for their weekly meetings for the next several months.) With the participant’s permission, the entire afternoon was audio-taped. Questions had been prepared in advance of the meeting and a flip chart was available, but little used. The focus group facilitators were clinicians familiar and comfortable with persons suffering from serious and persistent mental illness. A spontaneous connection with early arrivals was made out on the porch before the meeting started while the focus group facilitators were eating lunch. Some participants were dropped off earlier than others due to the transportation challenges. The facilitators offered part of their lunches, purchased at the local market minutes before. This simple act led to many conversations and a relaxation of all parties before the start of the "official" meeting. It soon became clear that focus group members knew one another and had participated in weekly groups, together, on a regular basis. This fortuitous circumstance permitted the group to get down to the business of the meeting more rapidly and to speak more freely. They had much to contribute on each question and demonstrated impressive and considerable humor about themselves, their predicaments, and their lives. They particularly enjoyed being paid consultants to the "big city folks." Questions and DiscussionThe group was asked a specific set of questions approved in advance by the Center for Mental Health Services/SAMHSA, which was the funding agent for this project of the Frontier Mental Health Services Resource Network. However, the discussion was far-ranging and interactive. Meeting participants sometimes jumped back to a previous topic in their efforts to share more information and to make certain that their out-of-town visitors really understood their situations. An overview of the project was given as well as the ground rules for the process. Included in this presentation was a description of what was meant by a "frontier area".
The participants spoke about how pleasant the area was with beautiful scenery, which was "serene", and how warm the weather was compared to northern parts of the state. "It’s real peaceful and you don’t have to worry about somebody breaking into your house or at least not as much." However, the discussion went almost immediately to the huge distances which people had to travel to meet their needs and how much they had to depend on others for transportation. "You make sure that, when you go to town, you get all your prescriptions for the month because I go into town once a month." Further, the distances caused feelings of isolation and depression. If they had a telephone they used it a lot. However, "If you need help at 3 am, you gotta wait! It is not like you have a neighbor right outside your door like in the city." The mental health center did have a 24-hour emergency crisis clinician on call.
Some respondents spoke poignantly about the fact that even though the distances were large, everyone seemed to know everyone else and their business. "Everyone knows that you have this problem." Some remarked that it was harder to make friends. In fact, one person said "I think, for awhile, I tried to just totally withdraw from society and people and to not interact with anybody, but that didn’t work for me. So now I am selective in who I talk to and what I share with them. Most of my friendships or acquaintances are people that are just kind of on the surface." When asked if that was lonesome, the reply was that it was "safe". A second consumer spoke about her sheep dog who seems to make bridges between her and others. Another person said "I wouldn’t live anywhere else because I think it’s also helped me to sort through my problems in a way too, on my own because the mental health people aren’t always there when you are isolated in a smaller community…you just don’t have these people to rely on all the time."
Having a family or friends with a car was perceived as very helpful to get needed services. However, the mental health center also provided case manager van drivers who logged a phenomenal yearly mileage. Consumers seem to spend more time in the van than in treatment. Sometimes people only got a ride one way and had to figure out how to get back home. Some consumers said, "they have their route and if you live outside their route…that can really be a problem". (It should be noted that this person lived 17 miles outside the route.) The staff members said that coordinating their own staff meetings with those for consumer groups posed a very difficult strategic problem with transportation.
When discussing their entry into services, some had been using them for so long they had forgotten where the referral had been generated. Some said the state hospital, some mentioned family members, while others used the telephone book for a self-referral. Some complained that the phone books they had were old ones and the emergency number they dialed got them, ironically, Community Corrections. This service had provided emergency call answering services until 3 years ago. Some participants spoke about the small frontier staff of the mental health center and the large job they had. Indeed, some meetings at other sites had to be discontinued, as well as outings to do fun things. Other groups focused on activities of daily living (balancing a checkbook, cooking, etc). There was some discussion about being spoon-fed and that consumers might take more responsibility, themselves, and with helping one another. Other participants spoke about many other people, whom they knew and who could use services, but were not connected to any care. To counter these comments, another participant said that she thought that small was beautiful… "because everybody knows everybody and you get to be kind of friends and you miss somebody when they’re not there…and…you try to keep track of those…or they call each other at home even." Others spoke about the stability of the group "so that you don’t have to explain yourself all over again". Yet others related that this stability could have negative side effects, such as unfavorable feedback to ideas which would then not be broached again. Yet everyone agreed that someone who listens well was the best treatment… "just being there to listen and be".
A consumer wanted a computer to be connected to the Internet but also needed lessons on how to use it. Others said they got free ones from the local school or a raffle but no one knew how to use them. Staff turnover was cited as a substantial problem but the focus group facilitators noted that this is also a problem for urban staff. A lady said, "I find it really hard for me to have to keep dealing with somebody different". Another consumer said, "I was tired of saying the same story over and over so I don’t say it no more". One of the focus group facilitators suggested that a videotape be made so that a new clinician could see it and then the consumer would not have to retell his or her story over and over. The group liked the idea but they were certain that the new case manager would still not take the time or have the time to see it. On the other hand, those workers who stay can also be a problem because "even if the personalities clash…you’re going to have to stick with the same person…and you hope that that’s the one that’s going to move on! (animated with group laughter)". The group talked about the multiple roles people play in small communities. Clinicians are also neighbors, relatives, shoppers in the grocery store, and churchgoers. One described the difficulty with her brother who is employed in the same agency where she was being treated. "It’s changed our relationship". Her case manager said that this same brother was her own supervisor on the same case, an awkward situation that made her uncomfortable. When asked what would keep counselors around, the group thought that more pay, hiring indigenous workers with families in the area, time to read the records so patients would not have to repeat their histories, more staff, and being native to the culture of the place would be advantageous. The focus group members also liked having bi-lingual clinicians. When asked if there were other organizations (e.g. church, grocery stores, Rotary Club, etc.) which might be helpful, one answer was the history museum. They said it gave them roots and linkages to the community. Further, the town had a shrine built at the top of a nearby bluff. Many participants said that it symbolized their faith or spirituality, which could be supportive to them. Alcoholics Anonymous and Narcotics Anonymous meetings were also available but at considerable distance. The local 4H organization was also mentioned as a truly rural group. There were senior citizen groups used by other consumers and the library was also mentioned as a resource. A discussion ensued about substance use and abuse out in the frontier. Cocaine, inhalants, acid, marijuana, crack cocaine, and methamphetamine were all listed. "You’d be surprised how big it is!" When asked how easy it was to find a dealer, laughter erupted in the group and we were told of a dealer who even printed his own business cards! Another consumer chimed in: "My therapist showed up at one of my AA meetings so I quit the meetings." When asked about the interface with the sheriff’s department, the response was: "It took them 6 1/2 hours to respond." 911 was not even available in this frontier. One of the consumers spoke about a serious attempt at overdosing on antipsychotics, but when she called, the counselor said: "Make yourself throw-up and I’ll call back in an hour." One participant noted that to get oneself into the hospital you "act real crazy and the cops come and get you". This behavior, however, is not unique to the frontier. There also appeared to be a problem between the police and emergency workers from the mental health center because of a lack of collaboration. Residential services/options seemed to be very sparse with a very long waiting list. Homeless services existed only in the town where the community mental health center was located. Vocational rehabilitation, work training, supported work, transitional work programs, and individual placement services, appear to be nonexistent. There was much confusion about all the rules and complexities around SSI, SSDI, Medicaid, and Medicare. Most consumers living on entitlements felt they had to figure out how to obtain the entitlements by themselves. A few were helped to obtain SSI or SSDI by the state hospital or the community mental health center physician, who evaluated them for only 15 minutes. Some of the consumers were surprised at being told they might be eligible for entitlements, because they were working and living independently.
The answers were: "indigenous people, religious people, a nonjudgmental person, an experienced person, a helping person, a listening person, someone who can stop being serious and have some fun."
When asked what would be helpful in the frontier, the responses were: "home visits, someone willing to travel miles and miles, willing to work with families, someone I have something in common with, someone who understands the social and economic problems here."
They did not know of any consumer-led services, other than the two van drivers who also provided support and education to the consumers. Other Comments and DiscussionIn looking over the transcript, we found that this group of consumers did not know about a wide variety of work options/programs. For instance, many participants did not know how to get entitlements, how to set up consumer-run enterprises, how to be empowered to ask for programs they needed, how to get their clinicians to pay attention to milder but annoying side effects of medication, or how to be more assertive and ask for a different clinician if there was not a match. Despite the perceived natural beauty of their surroundings, these people were consumers with serious and persistent mental illnesses who also suffered from poverty and extreme isolation. They relied upon whatever services a distant community mental health center could manage and "the kindness of strangers". Their treatment was minimal compared to standard maintenance and stabilization models found across the U.S. and did not come close to rehabilitation or Program for Assertive Community Treatment (PACT) models being offered in other parts of the country in service "pockets of excellence". The community mental health center only provided one weekly support group, medication reviews as needed, and two consumer/case managers in an agency van to provide transportation. Their personal resilience and persistence, in the face of life on the frontier with all of its challenges, were truly remarkable. SummaryIt is difficult to live in the frontier. It is even more difficult to live in the frontier with a severe mental illness. It is more difficult yet to have mental illness and medical co-morbidity or co-occurring disorders and live in a frontier area. Transportation is the number one problem to overcome. The distances to centers and hospitals, pharmacies and the basic necessities are large barriers to service and life. The sheer distance, scarcity of resources, few services, and a staff spread too thin and often unavailable when needed makes it a wonder that treatment occurs at all. Minimal supports are provided to the few people connected to the system but many people still fall through the cracks. Acquisition of entitlements is still a hit or miss affair. Consumers make linkages to any existing organization such as the library, post office, history museum, market, church, 4H, and senior citizen’s group for support and feelings of belonging to a community. The few staff working out there are devoted but overworked, often transient, and sometimes not culturally competent. They have found it as difficult as their clients to have multiple roles to play in the community in which they live. The treatment options are very limited (case management and a weekly group or two, and many long trips to and from the distant center for medication evaluations of their clients). Other options, such as crisis and nearby inpatient care, vocational and other rehabilitation strategies, are non-existent. Persons with mental illness living in the frontier have a small voice but very large needs. They include speedier crisis response, psychosocial and vocational rehabilitation, a range of housing and employment options, access to medical and dental care, eye glasses, hearing tests, cognitive retraining and therapy, and timely lab work and side effects evaluations. Finally, they need someone with whom to share their deepest fears and hopes in order to reclaim their lives. ReferencesBeeson, P., & Mohatt, D. (1993). Rural mental health and national healthcare reform. Paper presented at the National Association of State Mental Health Program Directors, Arlington, VA. Ciarlo J.A. (1999). Assessing need for mental health services in frontier America (Letter to the Field No. 22). Denver, CO: Frontier Mental Health Services Resource Network, University of Denver. Ciarlo, J.A., Wackwitz, J. H., Wagenfeld, M.O., Mohatt,D. F., & Zelarney, P. T. (1996). Focusing on "frontier": Isolated rural America (Letter to the Field No. 2). Denver, CO: Frontier Mental Health Services Resource Network, University of Denver. Deegan, P. E. (1988). Recovery: The lived experience of rehabilitation. Psychosocial Rehabilitation Journal, 11 (4), 11-19. Reprinted with revisions in W.A. Anthony & L. Spaniol (Eds.) (1994). Readings in Psychiatric Rehabilitation. Boston, MA: Boston University Center for Psychaitric Rehabilitation, pp 149-162. Duncan, D. (1993). Miles from nowhere. New York: Penguin Books. GAO. (1993, April). Rural Development: Profile of Rural Areas (Fact Sheet for Congressional Requesters). Washington, D.C.: United States General Accounting Office. Geller, J.M. (1998). The role of rural primary care providers in the provision of mental health services: Voices from the plains (Letter to the Field No. 10). Denver, CO: Frontier Mental Health Services Resource Network, University of Denver. Leete, E. (1989). How I manage and perceive my illness. Schizophrenia Bulletin,15 (2), 197-200. Lovejoy, M. (1982). Expectations and the recovery process. Schizophrenia Bulletin, 9 (4), 604-609. Popper, F. (1986, Autumn). The strange case of the American frontier. Yale Review, 101-121. Unzicker, R. (1989) On my own: A personal journey through madness and re-emergence. Psychosocial Rehabilitation Journal,13 (1), 71-77.
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