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Mill Lane Enterprises: “A step-by-step process…”

An Evaluation of the Mill Lane Program: Phase 1

December 2003

Health Research Unit, Memorial University of Newfoundland

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Principal Investigators: Dr. Doreen Neville, Health Research Unit, Division of Community Health, Faculty of Medicine, Memorial University of Newfoundland Dr. Michael Murray, Health Research Unit, Division of Community Health, Faculty of Medicine, Memorial University of Newfoundland Project Coordinator: Ann Ryan, Health Research Unit, Division of Community Health, Faculty of Medicine, Memorial University of Newfoundland Research Support and Interviewers: Sara Heath, Etienne Orr-Ewing, Jill Burrage, and Colin White Research Advisory Committee: Dr. Doreen Neville, Health Research Unit, Division of Community Health, Faculty of Medicine, Memorial University of Newfoundland

Linda Longerich, Health Research Unit, Division of Community Health, Faculty of Medicine, Memorial University of Newfoundland

Ann Ryan, Health Research Unit, Division of Community Health, Faculty of Medicine, Memorial University of Newfoundland

Sara Heath, Health Research Unit, Division of Community Health, Faculty of Medicine, Memorial University of Newfoundland

Catherine Bartlett, Waterford Foundation Lori Harte, Waterford Foundation Mike Wadden, Waterford Foundation Mary Dwyer, Waterford Foundation Susan Duff, Mill Lane Enterprises Dr. T. Callanan, Discipline of Psychiatry, Faculty of Medicine, Memorial

University of Newfoundland Funded by: Newfoundland and Labrador Centre for Applied Health Research

Waterford Foundation Department of Health and Community Services Discipline of Psychiatry, Memorial University of Newfoundland Occupational Therapist Association of Newfoundland and Labrador

Acknowledgements: The investigators would like to thank all the funders of this project. We would also like to sincerely thank Linda Janes, for her help with recruitment, Joan Muir for the audio tape transcriptions, staff of the Waterford Foundation and all the Mill Lane program staff, clients and waitlist people who participated in this study.

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Background A recent study by the Mental Health Promotion Unit of Health Canada indicated that the economic burden of mental health problems - both medically treated and not medically treated was $14.4 billion in 1998 (Joubert and Stephens). The recorded costs may be even higher, indicating that mental health problems are among the costliest conditions in Canada. This report strongly suggests that promoting the mental health of Canadians would be a sound investment not only to prevent mental health problems but also to reduce the economic burden of poor mental health. There is a growing awareness that, in addition to medications, skill building and social support enhancement can significantly improve the quality of life for mentally ill individuals. Mill Lane Enterprises is a supported workplace for persons coping with a mental illness. It provides workers with satisfying activity, socialization and valuable work experience. Mill Lane is funded through the Waterford Foundation and in 1991 moved from the Waterford Hospital location into the community. They now provide a supported workplace for more than 120 individuals, operating: 3 recycling depots; a textiles department, manufacturing conference bags and gift items; and a woodworking shop, producing pine furniture for home and office. The purpose of a program evaluation is to produce a valid estimate of a relationship between positive outcomes and the program being evaluated. Present day thinking requires that all health care service providers have an understanding of both the cost and the outcomes of the services they provide. Evaluation should consist of the degree of client success and satisfaction with the program and costs of the program. In addition, program evaluation should take into account costs and outcomes associated with alternative or limited treatment.

Purpose The purpose of this project was to compare health and quality of life outcomes and cost to the health care system of Mill Lane clients compared to outcomes of a similar group of individuals who have not participated in the program.

Objectives The objectives of this evaluation project were: To measure mental health outcomes for program participants compared to non-

participants including symptom reduction, skill development, social enhancement and community integration;

To estimate costs of Mill Lane program delivery; To estimate costs of health services to clients and non-clients comparing mental health

outcomes and health services cost for clients and non-clients.

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Methods Methodology This project is a retrospective case control study. That is, people who have participated in the Mill Lane program (cases) are compared with persons who have not received the program (controls). Our purpose is to determine if the two groups differ in outcomes such as utilization of health services and overall well-being. The study is “retrospective” because it compares cases and controls with regard to the presence of some intervention (Mill Lane program) in their past experience. Advisory Committee The Advisory Committee was set up to support the research team. The Committee met once a month and helped make decisions regarding mandate and methodology. Committee members were: Dr. Doreen Neville, Linda Longerich, Ann Ryan, and Sara Heath of the research team with the Health Research Unit; Catherine Bartlett, Lori Harte, Mike Wadden and Mary Dwyer of the Waterford Foundation; Susan Duff, Mill Lane Enterprises; and Dr. T Callanan, Discipline of Psychiatry. Sampling Mill Lane program clients and people on the waitlist for the program were recruited to complete a survey. Cases were selected from the clients in the Mill Lane program who had at least 2 years employment. Based on this, we estimated there would be 80 clients eligible for the study and our original goal was to recruit at least 40. This goal was exceeded and we were able to recruit 64 program participants for the survey (80%). Controls were selected from persons on the waitlist because this population was considered to be similar to program clients in the stability of their mental health. We had hoped to recruit as many controls as cases but we were able to recruit 31 people out of a possible 45 on the waitlist at the time (69%). Key Informant Interviews were held with staff and graduates of the program (see below for more information). Also, two focus groups were held – one with Mill Lane clients and one with people on the Waitlist. Consent The receptionist at the Mill Lane program was contracted to individually contact Mill Lane clients and people on the wait list to ask if they would be willing to participate in the evaluation. After verbal consent was obtained in this way, an interviewer from the research team made contact to establish a convenient time to complete the survey or interview. Before beginning, written consent for the survey or interview was obtained from each participant (See Appendix 1). Cases and controls were also asked for their MCP number, and whether they would consent to be part of a focus group at a later time.

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Data Collection: Survey questionnaire A one-on-one survey questionnaire was developed in consultation with the Advisory Committee (see Appendix 2). Information from both cases and controls included:

Demographics: From cases and controls we collected demographic information including age, sex, mental illness, treatment, length of illness, self-reported health care utilization, housing and employment.

Attitudes/opinions and health utilization recall: Satisfaction with the staff and the

Mill Lane program were collected from cases only. Questions about work and spare time in general were asked of both cases and controls. Also, both groups were asked to recall their contacts with health care professionals (e.g visits to the ER, in-patient stays in hospital, doctor visits, allied health professionals, etc) for the past twelve months.

Quality of Life Assessment: As part of the survey a validated Quality of Life survey

questionnaire called the General Well-being Schedule (see Appendix 2) was administered to both cases and controls. The General Well-being Score is recommended for use where a general population indicator of subjective well-being is required (McDowell and Newell, 1996; Chapter 5: Psychological Well-Being). It includes both positive and negative questions with possible scores from 0 to 110 to determine distress. Divisions of the scores can be made to express the severity of distress where 0 to 60 reflects “severe distress,” 61 to 72 “moderate distress,” while 73 to 110 represents “positive well-being.” Also, six subscores may be formed to measure anxiety, depression, positive well-being, self-control, vitality and general health (see Appendix 5).

All surveys were completed at one of the three Mill Lane locations in St. John’s, NL. A minimal transportation compensation of $5 was offered to participants who had to make a special trip to meet with the interviewer. Survey data was entered into the software package EPI INFO for analysis of trends and differences between the cases and controls. Data Collection: Chart reviews Utilization of emergency room use, hospital outpatient clinic attendance and inpatient stays in hospitals and clinics of the Health Care Corporation of St. John’s were estimated through hospital patient chart reviews for the fiscal year April 1, 2002 – March 31, 2003. Extractions included inpatient visits, tests and procedures, health professional consultations in the hospital and outpatient clinics and programs. All patient information on utilization of these services were recorded onto specifically developed extraction forms (see Appendix 3) and entered into Excel software. Data Collection: Key informant interviews and focus groups In consultation with the advisory committee, a series of open-ended questions were developed for the key informant interviews and the focus groups (see Appendix 4). These questions focussed on three areas: Work/Employment, Community and Health Care. Questions about community and health care were included because of their important influence on work and employment. Wording of the questions was changed where

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necessary to reflect the position of those being interviewed. There were fourteen questions in the interview guideline that addressed employment and health, satisfaction with the Mill Lane program, community support, and health care services for mental health consumers. Key informant interviews were held with 13 individuals: 9 staff (4 Occupational Therapists; 5 Psychiatric Therapy Aides), 1 administrator and 3 ‘graduates’ from the program i.e. those who had moved on from the Mill Lane program to employment in the community. Focus groups with Mill Lane participants and the wait list took place in the Mill Lane conference room at the Water Street location. There were 8 participants (4 men; 4 women) in the program focus group and 8 participants (5 men; 3 women) in the waitlist focus group. The two focus groups were facilitated by the members of the research team who administered the face-to-face survey. Where consent was obtained for audio-taping, interviews and focus groups were audio taped and transcribed. Where consent was not obtained, hand-written notes were taken. All transcriptions and notes were entered into the qualitative software program Ethnograph, coded and categorized by themes. Costing: Costing of health care utilization will be completed at a later date in Phase 2 of this study.

Results The results of the project are presented in three sections: the quantitative analysis of the survey, the qualitative analysis of the key informant interviews and focus groups, and the discussion and conclusions.

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SECTION I: QUANTITATIVE ANALYSIS Survey Results Demographics Gender: There were more males than females in the population of Mill Lane clients surveyed for this project (45/64 males, 70.3%; 19/64 females, 29.7%). There was a more even split between males and females in the waitlist group (17/31 males, 54.8%; 14/31 females, 45.2%). The difference in the mean age of the two groups was not significantly different, with the Mill Lane participants being slightly older at 44.4 years versus a mean age of 41.6 years for the waitlist. Education: The education levels of the Mill Lane program participants were significantly higher than the waitlist participants (p<.05). That is, Mill Lane participants had 41 % (26/64) with less than high school and 38/64 (59%) greater than high school; while the waitlist had 61% (19/31) with less than high school and 12/31 (39%) greater than high school.

* Mean Age: 44.4 years 41.6 years

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Housing: Types of housing included single, semi-detached or row housing, apartment, boarding home, Residential Rehabilitation (such as Access House and Pleasant Manor). Newfoundland and Labrador Housing and St. John’s City Housing were categorized as subsidized housing, although this may include apartments or single housing. The ‘Other ‘ category included: bedsitter and hospital. Most participants reported living in an apartment (Clients 47%; Waitlist 61%).

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Diagnosis: The most common diagnoses were depression, schizophrenia or bipolar. Individuals may have reported more than one diagnosis. The ‘Other’ category included: personality disorder, panic disorder, paranoia, and unknown. Mill Lane clients were more likely to report a diagnosis of schizophrenia (24/64; 38%), while waitlist participants were more likely to report a diagnosis of depression (19/31; 61.3%).

Work and Employment Mill Lane program: When participants were asked why they attended the Mill Lane program (waitlist participants were asked why they wanted to attend), the most common answers in both groups were: to have something to do and keep busy (clients: 70.3%; waitlist: 67.7%), and to be productive (clients: 60.9%; waitlist: 67.7%; Table 1). Also, while both groups rated ‘to keep well’ highly (clients: 57.8%; waitlist: 64.5%), the client group chose the statement ‘to meet people’ more often than the waitlist group (client: 59.4%; waitlist: 42%).

Table 1: Why do you/want to attend Mill Lane? Client (case)

n (%) Wait List (control) n (%)

Something to do/keep busy 45 (70.3%) 21 (67.7%) To work and be productive 39 (60.9%) 21 (67.7%) Keep well 37 (57.8%) 20 (64.5%) Meet people 38 (59.4%) 13 (42%) Make money 29 (45.3%) 13 (41.9%) Learn skills 22 (34.3%) 9 (29%) Love to work 6 (9.4%) 0 Self esteem 4 (6.3%) 0 Other* 3 (4.7%) 1 (3.2%)

* Other includes: for the exercise, the benefits, and because the doctor recommended the program.

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Employed Elsewhere: When participants were asked if they would like to be employed elsewhere in the community, clients in the program were significantly more likely than the waitlist to reply ‘Yes’ (clients: 64.1%; waitlist: 29%; p< 0.05). Since most clients were generally pleased with their time and work in the program (see page 12, Table 2 About my work at Mill Lane/Evergreen), this is likely a reflection of the readiness of some clients to move on from the Mill Lane program to employment in the community.

Other types of work: As shown in Figure 6, when both Mill Lane clients and waitlist participants were asked what other type of work they would like to do, responses varied (n=64; one participant chose more than one option). The major categories included: manual labour (cleaning, fishing, farming and mechanical repair); semi-professional employment (managerial positions, manufacturing, carpentry, forestry and plumbing); the hospitality industry (cooking and serving in a restaurant, bar or hotel); retail jobs (cashier and sales in various retail outlets); community service (social work and positions such helping others in the community). Other categories included crafts/ arts (sewing, crafts, painting); office work (clerical, computer, bank); medicine/vetinerary (nursing, working with animals); and teaching. There were six people who replied that they would work at anything to occupy their time.

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About my work at Mill Lane / Evergreen: Sixty-four Mill Lane clients completed the survey. Most were employed in recycling (47/64; 73.4%; some worked in more than one area) and the majority (37/64; 57.8%) were located at the Water Street location (see Figures 7 and 8).

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Clients of the program were asked about their satisfaction with their time and work with Mill Lane. The vast majority of participants (greater than 80%) were comfortable in the program, enjoyed their work and agreed that it helped them cope with their illness and their day-to-day life (Table 2). The only statements where satisfaction levels fell below this level were in regard to salary and empowerment. That is, 67% thought the pay at Mill Lane ‘could be more’ or was ‘definitely too little,’ and 22% felt that they did not ‘have a say in how Mill Lane operates’ ‘all’ or ‘most of the time.’

Table 2 : About my work at Mill Lane / Evergreen n (%) The orientation session prior to working at Mill Lane was*

Very / Somewhat useful 48 (84 %) A bit / Not useful 9 (16%) I do my work at Mill Lane well with no problems All / Most of the time 58 (91 %) Some / None of the time 6 (9 %) I feel upset, worried or uncomfortable while doing my work

All / Most of the time 4 (6 %) Some / None of the time 60 (94 %) My work at Mill Lane is boring Extremely / Very much so 1 (2 %) Some / Not at all 63 (98 %) I feel that I don’t have a say in how Mill Lane operates**

All / Most of the time 14 (22 %) Some / None of the time 49 (78 %) I think the pay for my work at Mill Lane is Very good / Adequate 21 (33 %) Could be more / definitely too little 43 (67 %) The Mill Lane program is helpful to me Extremely / Very much so 63 (98 %) Some / Not at all 1 (2 %) I feel that Mill Lane helps me to cope better with my illness

All / Most of the time 60 (94 %) Some / None of the time 4 (6 %) I feel that Mill Lane helps me cope with my day-to-day life

All / Most of the time 55 (86 %) Some / None of the time 9 (14 %) * Total ≠ 64 (3 did not answer; 4 did not receive orientation) ** 1 individual did not answer this question.

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When asked an open-ended question as to what they would like to see changed at Mill Lane (Figure 9), the most frequent suggestions fell into three categories: program expansion, improving the physical environment, and increasing wages. Suggestions about program expansion included: establishing a Clubhouse1 model of mental health service delivery; opening up the program to more people; increasing the days of work for those clients that are able; having more people working on certain busy days such as Saturdays; expanding the types of work/businesses available to clients; and opening more centres/depots. Suggestions about improving the physical environment included a larger working space in all work areas (textiles and recycling); new lockers; more storage space; and a larger kitchen. The third most common suggestion was an increase in wages: ‘more pay,’ ‘better pay,’ ‘change the pay,’ ‘higher wages.’

About Mill Lane / Evergreen Staff: Mill Lane clients were also asked a series of questions about the program staff (Table 3). Most participants agreed that staff assisted them in doing their job well (81%); were not difficult to approach about work issues (92%); and were respectful (98%). However, there was slightly less agreement around the

1 The ‘Clubhouse’ is a comprehensive model of rehabilitation and supportive services for mental health consumers. Please see Appendix 6.

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empowerment statement “The staff encourage me to make my own decisions and solve problems as independently as possible” (all/most of the time, 77%).

Table 3 About the Mill Lane / Evergreen Staff n (%) The staff assist me in doing my job well All / Most of the time 52 (81 %) Some / None of the time 12 (19 %) The staff are difficult to approach about work issues that I may have

All / Most of the time 5 (8 %) Some / None of the time 59 (92 %) The staff encourage me to make my own decisions and solve problems as independently as possible

All / Most of the time 49 (77 %) Some / None of the time 15 (23 %) I feel that the staff do not respect me as a person All / Most of the time 1 (2 %) Some / None of the time 63 (98 %)

When asked what improvements staff members could make in order to create a better work and therapeutic environment, comments offered fell into three main categories: positive, more sensitivity, and more empowerment for Mill Lane clients. Positive: Some clients could not think of any suggestions and praised staff members and the program. “They are doing a great job.” “They are very helpful.” “Never met a nicer group.” More sensitivity: Many thought that some staff members needed to be more understanding and sensitive towards clients. “More understanding, less judgemental…” “More approachable…” “Some supervisors need to change attitudes and not look down on us…” Empowerment: Some clients felt that they should have more responsibility and independence, with less staff involvement. “More responsibility…”

“Boss shouldn’t have to be on the floor helping…” “More say in design of products…”

Other suggestions that did not fall into the above categories include: having more occupational therapists or assistants; having work that is more flexible and other work/programs, and that staff should encourage a more social environment.

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Community Both Mill Lane clients and waitlist participants were asked questions about their spare time outside of work and employment. Overall, Mill Lane clients were:

more social; enjoyed their spare time; and spent time with friends and family

Waitlist participants were more likely to be: bored in their spare time; felt lonely and wished for more friends; less likely to go out socially with other people (Table 4).

Table 4 About My Spare Time

Clients Wait List n (%) n (%) I spend time with friends or talking to friends on the telephone

Everyday / several times a week 43 (67.2%) 18 (58.1%) Not often / Never 21 (32.8%) 13 (41.9%) I am bored in my spare time* All / Most of the time 14 (21.9%) 18 (58.1%) Some / None of the time 50 (78.1%) 13 (41.9%) I go out socially with other people* More than / At least once a week 28 (43.8%) 7 (22.6%) Not often / Not at all 36 (56.2%) 24 (77.4%) I feel shy or uncomfortable with other people All / Most of the time 12 (18.8%) 7 (22.6%) Some / None of the time 52 (81.2%) 24 (77.4%) I enjoy my spare time All / Most of the time 46 (71.9%) 18 (58.1%) Some / None of the time 18 (28.1%) 13 (41.9%) I spend most of my spare time Mostly / Sometime with other people 30 (46.9%) 12 (38.7%) Mostly / Always with myself 34 (53.1%) 19 (61.3%) I feel lonely and wish I had more friends* All / Most of the time 17 (26.6%) 15 (48.4%) Some / None of the time 47 (73.4%) 16 (51.6%) * Significantly different. Mantel Haenszel: p <.05

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Health Care Self-reported utilization: Self-reported utilization of health care services in the previous 12 months (for any reason) was recorded for emergency room visits, overnight stays in hospital, visits and contact with health care professionals, allied health professionals and alternate health care providers. Self-reported emergency room visits: Waitlist participants were statistically more likely than Mill Lane clients to report visiting an emergency room in the past year (Yates corrected, p<0.05; Figure 10).

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Self-reported hospitalizations: There were statistically significantly fewer overnight hospital stays for those in the Mill Lane program versus those in the waiting list. Sixty-one percent (61%; 19/31) of the waitlist participants reported being a patient overnight in a hospital in the previous 12 months, while this was true of only 20% (13/64) of the Mill Lane clients (Figure 11; Kruskal-Wallis p<.05). Self-reported average utilization per person per year: The waitlist group reported a significantly greater average number of visits to an ER (Figure 12). The Waitlist group averaged 2.0 visits to the ER per person per year compared to 0.97 for clients. The Waitlist group also averaged 13.1 hospital in-patient hospital stays per person per year compared to 8.5 for clients. Average reported contacts with a family doctor in the past year were also greater for the waitlist group (Waitlist, 11.3; Clients, 8.5), though the difference was not statistically significant. The average number of reported contacts with case managers (statistically significant, Kruskal-Wallis p<0.05) and social workers were greater for the client group than the waitlist.

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Seeking help: The same percentage of people in both groups attended self-help or support groups in the past year (Clients 13/64, 20.3%; Waitlist 6/31; 19.4%; data not graphed here). Nine of these nineteen people (47%) sought help/support for addictions and substance abuse (alcohol, drugs, smoking, gambling). Waitlist participants were significantly more likely (Kruskal-Wallis p< 0.005) than Mill Lane clients to report that “there were times during the previous 12 months when they felt they needed health care but did not receive it” (Figure 13); Waitlist 16/31, 51.6%; Clients 14/64, 21.8%.

* Difference is statistically significant; Kruskall Wallis p< 0.05

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The health care sought in all but one of these cases (Figure 13) was psychiatric or mental health care. Reasons given by participants from both groups for not receiving this care were similar. They included: rejection for admission to hospital, and not pursuing care because of frustration or anxiety around access to care. Recorded Utilization: In addition to self-reported utilization of health care services, recorded utilization of hospital-based care was recorded through hospital chart reviews from April 1, 2002 to March 31, 2003. These include visits to an emergency department, number of hospitalizations, number of days stay in hospital, utilization of hospital outpatient services and number of tests/procedures while in hospital. Recorded emergency room visits: According to our chart reviews, eight of the 31 waitlist participants (26%) had visited one of the two emergency rooms in the St. John’s area in the year studied. This compares with 7/64 (11%) of Mill Lane client participants (see Figure 14, below). Though this does show a trend for greater number of ER visits by waitlist participants, unlike the self-reported numbers (above) the difference is not statistically significant.

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Recorded hospital admissions: Seven of 64 (11%) Mill Lane clients in our sample were admitted to hospital in the year 2002-2003. In the same time period there were 12/31 (39%) of the waitlist sample admitted to hospital (Figure 15, below; difference is statistically significant, p< 0.05).

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Recorded average utilization per person per year: The average number of visits to the emergency department, inpatient hospital stays, tests/procedures received during hospital stays, and outpatient visits per person in the year reviewed are given in Figure 16. On average the Waitlist group (0.903) had more visits per person to the Emergency Department than the Client group (0.203), but unlike the self-reported visits to the ER (see Figure 10, above) the difference here was not statistically significant (Kruskal-Wallis p=0.06). The difference in the average number of inpatient stays per person (Waitlist 6.1; Clients 4.4) and the average number of test/procedures per person during those stays (Waitlist 0.677; Clients 0.469) was statistically significant between the two groups (Kruskal-Wallis p<0.05). Clients had more Outpatient visits per person per year than the waitlist group (Clients 9.8; Waitlist 2.7). This difference was statistically significant ((Kruskal-Wallis p<0.05).

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General Well-Being: As shown in Figure 17, General Well-Being Score: Distress Level, a significantly greater percentage of waitlist participants scored in the severe distress level than Mill Lane clients (Waitlist, 48.4%; Clients, 34.4%; p< 0.05). Also, while the differences were not statistically significant, a greater percent of clients than waitlist scored in the positive well-being level and the mean score of Mill Lane clients was greater than the mean score of the waitlist (Clients, 67.88; Waitlist, 59.29; p=0.054).

Mean Score: 67.88 59.29 Median Score: 69.00 61.00 Range: 23.0 – 103.0 25.0 – 92.0

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Further breakdown of the ratings of the General Well-being scores into subscores (Table 5) shows that in comparison to the people on the Waitlist, on average Mill Lane clients felt less anxiety, depression, and had a greater sense of positive well-being and vitality. (For an explanation of General Well-being Schedule: Subscore Labels and Question Topics, see Appendix 5). For depression, positive well-being and vitality, the differences were statistically significant.

Table 5 Mean General Well-Being Subscores Topics Clients Waitlist Anxiety 14.9 13.3 Depression* 13.4 11.0 General Health 8.2 8.1 Positive well-being* 8.4 6.8 Self-control 10.6 10.2 Vitality* 12.4 9.8 * Significantly different. Mantel Haenszel: p <.05

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SECTION II: QUALITATIVE ANALYSIS Key Informant Interviews and Focus Groups The three main areas of discussion in both the focus groups and the Key Informant interviews were: Work/Employment, Community and Health Care. Comments about community and health care issues were solicited because of the impact of these two areas on work and employment. Theme analysis suggests both strengths and issues under each of these themes. Employment Participants gave their opinion on work and employment in general and specifically on employment in the Mill Lane program. STRENGTHS: All participants of the interviews and the focus groups agreed that work and employment affects overall health in a positive way. There were several themes that emerged when asked in what way employment affects health. Social: Improvements in socialization and social skills was seen as one of the benefits of employment, particularly by the professionals interviewed. The work environment as a social support network was also mentioned as beneficial.

“…their social interaction improves…” “Everybody here seems really friendly…Meeting new people is really

something…” “It gives them a social group and then they are not as isolated.”

Personal: Work and employment can affect an individual’s life in more personal ways. Informants felt that employment improved self-confidence and esteem, hygiene, a feeling of productivity and empowerment, and a certain imposition of structure and distraction.

“It helps provide social contact with new people, learning new things, and this builds pride and self esteem.”

“…it really improves their self esteem because they make a product that is

valued by the public.” “I find it really, really good. I’m right proud of it. Because when I was on

the psychiatric ward I wouldn’t let nobody know, but right here, I tell the world and I find it very helpful.”

Improvements in appearance and grooming were also seen as one of the benefits of employment.

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“…someone who comes in … and their hygiene and social skills are not good - within three days of working here (we never had to say anything to her), she came in all cleaned up and was speaking with people.”

“Because they have to look clean and groomed for work, their hygiene

improves dramatically…” Many of those interviewed felt that work made them feel productive and gave meaning to their daily lives.

“Employment affects my overall health because if I am not productive it is going to affect how I feel about myself.”

“Being involved in meaningful work gives meaning to your life.” “Yes, work is very good for me. It helps my self-esteem. It makes me feel

more independent.” Work is viewed as a way to impose a certain healthy structure to a person’s life. Having this structure – having to be present at a certain place for a certain period of time to work – provides a positive focus in life. This benefit was expressed by both professionals and consumers but seemed particularly important to consumers. “…gives structure to their lives…”

“I’m not depressed when I’m working – not down. It gives me a reason to want to live.”

“…I’ve been looking after my Mom and she’s been sick and there’s been

lots of stress, and to come here three days a week to get away from that – it’s helped me tremendously.”

Decreased health service utilization: Both professionals and consumers felt that meaningful employment decreased utilization of health care services. This was noted particularly by professionals with the Mill Lane program. “…there are less admissions to hospital…” “It keeps people out of hospital.”

“I’ve heard clients say, ‘you know, I haven’t been back to the hospital in x number of months’ or ‘x number of years.’”

STRENGTHS of Mill Lane: There were many positive aspects to working in the Mill Lane program noted by participants and staff. These include: the constructive interaction of clients and staff, the beneficial mix of business and clinical program, the variety of jobs, the supportive, safe environment provided for the individual, and the empowerment of participants in the program.

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Interaction between staff and clients: Both clients and staff were enthusiastic about the everyday interaction between clients and professionals in the program. They liked the friendly environment that this produced in the workplace.

“There is always interaction between the clients and the professionals on a personal and on a professional level (coffee breaks and lunches, etc.). …because if there is more connectedness with clients there is immediate results.”

“…I like working with the clients. …at the Waterford … you saw them at

their worst. But here you see them at their best.” “I like the staff and …they treats me like one of them, right?”

A business and a clinical program: Staff believed that there was value in the fact that a therapy program could also be a productive business venture.

“I like the fact that Mill Lane is a program for clients with mental illness that is not ‘traditional’ therapy. It’s very normal. It’s as normal as can be. It gives them a sense that they can contribute. I like that….”

“The fact that we are clinical program that has an interaction with business

and the public – this is very valuable…has to be quality work. They see the value here… We are comparable to a … private organization without the clinical program and this validates what they do.”

“Combines a business with a program. Gives us a real opportunity for

clients to work and also provides the support of a clinical program. It’s not just a make work program; it’s the real thing.”

Variety: Offering a variety of jobs (recycling, woodworking, textiles, reception, kitchen, etc.) was considered to be an important aspect of the program because everyone is different, with different strengths and capabilities.

“We have a nice range of jobs – cause we have a range of people here with different skills and it’s nice to be able to fit all these people in.. I’d like to keep that range of jobs.”

“People have to have choice in where they work and I think we have to

respect that.” “…we’re not all on the same level…”

Supportive environment: Clients mentioned the value of having a working environment that took into account their illness and their pace of recovery.

“…a stable, secure environment and working with people who shared similar challenges I was dealing with. It was knowing that I did not have to hide my illness and that I could deal with the various medication side-effects on a day to day basis.”

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“I worked here for 8 years and I was never fired or punished for anything.

There were days when I could not come to work because of a lot of stress but they understood.”

“Mill Lane is a good program because first when I came here I was putting

newspapers together and even that I found stressful. But later on I got used to the environment and that helped me to function better. Then when I went to woodworking it was better cause it was more challenging. This step-by-step process is very good for clients who come from the hospital to gradually get better... cause I’ve seen people who are still not ready because they were re-hospitalized and then they had to start again.”

Empowerment: Client participation is encouraged in decisions made within the program. This was regarded as an important step towards empowerment.

“Clients participate in the decisions of the enterprise; the power structure is more level than most programs of this sort.”

“That whole piece of ownership – that its their job and they want to do it

well and what can they do to make it better…The whole ownership thing is very important... It’s still being built on but it certainly has increased over the last 5 years…”

“I think it’s important to keep the client’s perspective. I think they have to have primary input into changes that occur. It’s important to keep the principals of empowerment and productivity intact.”

ISSUES: The challenges with regard to the Mill Lane program that were discussed could be broken down into the issues of the work environment, the present structure and the future direction of the program. Work Environment Some issues centred around the work environment such as: maintaining the clinical aspects of the program, the present lack of resources and space, the empowerment of clients, work motivation and self esteem and the challenges of working in a unionized environment. Clinical program: Some key informants felt that Mill Lane should keep in mind that it is a clinical program and not just a business.

“I think it’s important to remember that Mill Lane is not just a business, but a clinical program as well. That has to be the main thing. Sometimes I think the business part is emphasized too much and we lose sight of the client part. …For some the business end of the things is great but for others not as ready to take the stress, have to be careful that we don’t loose the program part.”

“…because we look at this as supportive work. But down the road we are hoping to make it more transitional, at least for many. But not for all. I think there

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is value in providing a supported work environment for certain people. It’s important to keep the clinical part of the program.”

Lack of resources/space: Some people felt that working within financial constraints that restricted expansion or changes to the program.

“We are stretching the resources that we have now. Space is something that is needed. We don’t have a good flow of material right now because we need to rearrange the space.”

“Where we are there is not enough space and therefore there is no privacy

when it is needed.” “To a certain extent we are hamstrung by the overall health care system in

terms of budgetary restraints. That’s a very frustrating experience but one has to be pragmatic about these things most of the time.”

Empowerment: Having consumers/clients of Mill Lane take ownership of the program was an issue for some of those interviewed. The concept of client empowerment was sometimes difficult for some staff who were more accustomed to a caregiver/patient relationship.

“…The empowerment piece is not dealt with consistently cause everyone on

staff has their own way of doing things. We have to be more consistent in getting consumers to make their own decisions…”

“…our OT said to us ‘this is your program,’ right. That’s number one. And

you know when we go to meetings…we talk and they don’t listen to us. They don’t take …us serious, right?…there’s times when we do give our input but we’re not listened to.”

Work motivation/Self-esteem: Moving away from social assistance and offering minimum wage were regarded as important steps in keeping clients motivated and improving their self-esteem.

“My main thing… things can be sometimes difficult to keep our workers motivated. The problem with having a clinical program in a work setting is that you can’t give them any monetary things or they lose their social assistance… if they are out there earning money and contributing and not on social assistance, this is a big boost to your self-esteem.”

“…it would be nice to have something to get off social assistance and get

out to a full paying job.” “…would like to see minimum wage with income support for clients self

esteem and employment.” Union: The Mill Lane program operates through the Health Care Corporation of St John’s, and sometimes there are considerations due to the fact that the program must operate within

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the context of the various collective agreements under which staff are employed. Present Structure There were other issues around the present structure of the Mill Lane program. These included: the lack of support for moving beyond Mill Lane into community employment, loss of benefits in community employment, socialization and social skills, assessments, free lunch, and the name of the program.

Moving on: Several of those interviewed were concerned about not being able to move out of the program and into a job in the community.

“When my medications started to stabilize I started to realize that I needed more challenges and they were not capable of offering me those challenges. And the fact that there was no one within the program to help you move on – that’s very important… It’s important for people to reach their full potential and not be stuck in one place.”

“I feel that Mill Lane should have another step – for people to come here

but then to move on.” “Perhaps this is just me,… but sometimes if you’re here too long you kind of

get into a rut. And for me it lowered my self-esteem and it made me feel like I couldn’t go on and do other things. So I think you should be encouraged and helped to move on…”

Some commented that there were disincentives to moving from Mill Lane into the community. If clients left the Mill Lane program for minimum wage jobs these jobs had no benefits to cover the high cost of medication.

“They need to maintain some of the benefits that they are receiving now for an extended period of time until they are secure and comfortable in their jobs and community. Like now they have their medications covered if they are on social assistance. That’s invaluable to them…”

“…we need to look at the benefits that people on social assistance receive

(medication card, etc.), they need to allow for some supports to continue for people who are able to obtain independent employment…”

“Well, like I think if we do manage to get a job, I think being able to keep

our drug card unless we’re making really, really high wages… A lot of us are on very expensive medications and I think that’s one thing that should be looked at.”

Socialization: Some suggestions were made by Key Informants around help and support that should be provided regarding socialization and learning social skills.

“Also, for the socialization part of their lives – socialization is inhibited cause of their medications and their illness – we need more programs for this…”

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“Need training for social skills as part of the program, for example through videos, role playing and using video cameras…”

Assessments: Some staff were concerned about the assessment procedures for new participants in the program.

“The assessment process for entrance into the program can be too stressful for many. They have failed in so many things and we are almost setting them up for failure once again.”

Free Lunch: The program presently provides a free lunch to clients. This was viewed by one Key Informant as contradicting the nature of the program’s philosophy.

“I would really like to get rid of the free lunch…we have tried to set up from the beginning that… people get paid because they work. You know, ‘I do something, I get paid.’ It’s valued. Getting a free lunch is not of the same philosophy as working for what you get. …Even if they were to pay a $1.50 for lunch… It just sets up a different thing in their heads…”

Name change: Some clients suggested that the name “Mill Lane Enterprises” is associated with mental health and the Waterford and a mental health program. A name change was thought appropriate to indicate to the community at large that the people working there are employees like any other business.

“…we’re into recycling. I think the name should be changed to Evergreen Recycling…take Mill Lane out and of it and put down Evergreen Recycling….a lot of people says…Mill Lane and Waterford Foundation… it’s a mental illness program…. The public should know we are workers…we can do the job just the same as anybody else.”

Future Directions Key Informants and focus groups made suggestions regarding the future direction of the Mill Lane Program to improve the program or address gaps in service. A major gap identified was the lack of services for those recently discharged from the hospital, who were not ready for the challenges of the Mill Lane program.

“…There is a need to develop a continuum of services for people who are beginning to recover from their mental illness… can’t contend with Mill Lane but want to be productive…want to get back to some sort of work situation….We’ve made some strides in that area – Teamworks it’s called….”

“There are not enough services for people before they come into Mill

Lane…for mental health patients to come to work here three days a week is quite a challenge, so we are only helping the highly functioning individuals by having that requirement….not a lot of programs that can prepare people for that kind of commitment….need to look at having something to bridge the gap.”

A suggestion was offered for developing different kinds of rehabilitation programs for those who could not contend with Mill Lane for physical and socialization reasons.

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“Need another rehab program that does not involve such hard physical

labour. Older people in the program cannot handle the work or if they do they are really beat out at the end of the day…. Need something where a day might consist of 2 hours of social skills building, 2 hours of employment skills and 2 hours out in the community working. I’d love to develop some kind of program along these lines.”

Present program participants and waitlist people tended towards wanting to maintain the safety of a sheltered workshop.

“For me I know, I need a sheltered workplace…I don’t even feel comfortable outside anymore.”

“I’d rather be somewhere where I can feel safe…” “I’m just not going back out there anymore. I’ve just had too many bad

experiences.” “I don’t think I’m going to be able to go any further…”

Whereas staff and graduates of the Mill Lane program wanted a more flexible continuum of supported services based upon the individual’s needs and stage of recovery.

“Everyone’s needs are different you know. There are some that will need to stay here and there are others who are quite capable of moving on, they just need a little help…”

“Everyone is at different levels so no one program is sufficient for all…” “I have workers who will be able to move on but I also have workers who

will not. It’s hard to put everyone in the same situation.” “Depends on the client; some are happy here, happy with the safety of Mill

Lane. But if we had more supports, offer more assistance for them they might be able to move into a competitive model.”

“You need a multi-step process and we only have one step… We need a

Clubhouse2 for people who cannot make it in here (Mill Lane Program)…I think it’s a process. If you’ve got a process, like people come here and work minimum wage for three days then graduate to five days with extra pay and responsibility and then through supported employment gradually move out into the community. This is a process for people. It’s not like – get out there and get a job. It’s got to be a dynamic process cause people improve or people relapse.”

Some participants were enthusiastic about expanding the Mill Lane Program to increase the number of people it accommodates and expand the scope of its mandate.

2 The ‘Clubhouse’ is a comprehensive model of rehabilitation and supportive services for mental health consumers. Please see Appendix 6.

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“Need more Mill Lane programs in different parts of the city and the

province. Because I think it is so helpful.” “Have another program that would run for 5 days as opposed to 3 days.

This would be a much smaller group and done in the community….maybe 10-20 positions in the community and 1-2 staff that are trained in job coaching. If I was an employer and someone said I can give you an employee for free, I would say ‘Yes!’…”

“They (Mill Lane) only hires on 140 people…it would be better if the

community had a couple of places like this where they could hire on another 140 people. That way there wouldn’t be … this long waiting list…”

Some participants thought the Mill Lane program was achieving more with its budget than most health care programs. Further investment into the program for expansion or through the establishment of a Clubhouse was thought to be appropriate, especially when many mental health beds were taken out of the system some years ago with only minimum resources relocated in the community to replace them.

“It’s a 2 million dollar budget and a good part of that comes from the business operation and a lot of people are helped for that amount of money… There are 142 people that are helped each year and part of the budget is repordedly generated by the people in the program. Last year we grossed 1.4 million dollars. Even after the bills were paid we made a profit. There’s not a lot of programs that can do that.”

“The Clubhouse has not gotten off the ground mostly because of money. I

believe this money should come through the Health Care Corp. I think they have to provide services. Years ago there were twice as many beds at the Waterford. Those beds have gone. But where’s that money gone? It never got back to the community…”

Community STRENGTHS: The community outside the Mill Lane program offers help and supports to consumers of mental health services. These included a variety of programs and services (see Appendix 6), and relationships with community groups and businesses. They include: Social and recreational programs:

“There are some social and recreational opportunities available out there now, for example through ‘Meeting Place’…”

“I get the impression that there are a lot of programs out there like New

Beginnings (they offer several courses, sewing, ceramics, but with a definite end), Longside Club, Pottle Centre…”

“I don’t know if you guys are aware, but there’s one (recreation program)

at the Waterford. There’s a gym…they got a weight room.”

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Career planning and educational services:

“Teamworks has potential (they do envelop stuffing, raking and gardening things) to make people believe there is value to what they are doing…”

“Teamworks…a great program that works with individuals that are not

ready for that 3 days a week.” “There is a ‘Prep’ Program that is supposed to get you ready for work…”

Housing support services:

“If one of our people had a problem with housing we would try to direct them to the appropriate resource. There are places in town that people use like Pleasant Manor, a positive supportive environment…. It would be nice if there was more of this supportive housing. It’s meant to be transitional…”

“There is also [name] at the Waterford who deals with housing issues for

patients.” Some inroads have been made in employment in the community for graduates of the Mill Lane Program within private business ventures such as ‘Auntie Crae’s’ and ‘Griffiths Guitar Works.’ “Auntie Crae’s has been really good.”

“In our discussions over the last few months with the staff at ML, there are lots of areas that really look favourably on hiring people with mental illnesses eg. Wal Mart…”

There has been community support from various sources for the Mill Lane Program, including the city of St. John’s, Petro Canada and Rotary groups.

“We’ve had good support from Petro Can, several Rotary groups, good relationships with them.”

“We do get some support from the community. For example, Petro Canada

provides the vans and the gas. The City and some businesses do help financially.” ISSUES: Problems and issues with regard to the general community include a lack of understanding and awareness of mental illness, transportation for clients, the fragmented nature of the services for metal health patients in the community, the difficulty in accessing affordable housing, the need to obtain more support for employment in the community beyond the Mill Lane program, and the need for more centres under a Clubhouse model that would support those who are not ready for Mill Lane.

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Advocacy/Awareness: There were those who felt that the community in general was not aware of the differences between a mental illness and mental disability and this lead to discrimination and misunderstanding. Awareness and understanding was particularly important for consumers of mental health services who were working out in the community.

“…more advocacy in the community to make people aware that our mental health clients want to work and they want to contribute and be part of the workforce. There’s still a stigma and ignorance attached to mental illness.”

“Don’t get a lot of respect from the public. We still have an awareness

problem with the public. They think the workers are mentally delayed. They do not understand the difference between mental retardation and mental illness.”

“…just because I have moved on from Mill Lane doesn’t mean that I am not

dealing with the same challenges. I still have side effects of my medications that I am dealing with and I find it very, very hard…My employer knows of my condition and I want to be treated as equally as possible but at the same time there has to be some kind of understanding.”

Fragmented services/Pooling resources: Social and recreational opportunities can be important to consumers of mental health services. They can help physically and emotionally with the illness and with the side effects of medications. Informants and participants said that such services are unstructured and available only at certain times.

“We don’t have a social club. You know, like we don’t have any…place to go.”

“If we had a little place to get together, you know, and you could drop in

anytime…” “I searched (for) a program Monday. It was a day program at St. Clare’s,

but …it’s for 10 weeks… once that 10 weeks are over, that’s gone…I also tried Kirby House…they had a 10 week thing once… and when that was gone there’s nothing else. There’s nothing constant.”

A pooling of fragmented services presently available in the community was mentioned as a possible solution for more social and recreational opportunities.

“Needs to be pooling of the resources in the community…Need social and

recreational opportunities available evenings, weekends… The Y has a minimal fee but you still have to access this through case-management. People with physical disabilities probably have the same issues and maybe there needs to be pooling of resources for this…”

“Waterford and the Y allow access to their facilities but it is limited as to

what they can offer and people have to pay extra for access to fitness, etc…even if the city could offer more activities like water fitness, racketball, social programs…more options to choose from.”

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The Clubhouse model (see Appendix 6) was seen as one way to pool these resources and offer a continuum of such services for all mental health consumers.

“… but I think the Clubhouse will benefit those who cannot meet that three-day-a-week requirement…the present system is rather piecemeal but the Clubhouse would have all services under one umbrella and be available all year round and all the time, not just certain hours…”

“…there are many people within and outside the program that do not have a

place to go. This is where I have to go back to the Clubhouse model again, because this is one of the aspects of the Clubhouse – to actively seek out members so they will be more productive in their lives, even if they are not employed right now.”

“Presently, the services for mental health consumers are fragmented. We need a continuum of services like the Clubhouse model with all the mental health consumer groups involved…”

“A clubhouse model would be a huge step to work together towards

maximizing available resources.” Housing: Some key informants did not believe housing was an issue for clients of Mill Lane. This may be because one of the criteria for entry into the program is a stable housing situation. Issues when they arise are considered to be taken care of through the client’s social/case worker or through the Waterford Hospital. However others, including Mill Lane clients themselves, raised several housing concerns, again mentioning the Clubhouse as part of a solution.

“Generally speaking… the housing for Mill Lane clients is not a great big issue…”

“I think is would be very important for the Clubhouse to create a housing

component. I think there needs to be a model to show people how this can be done well.”

Most agreed that housing units for people with low income (as are most mental health consumers) are inadequate, and that proper housing was hard to find and expensive. “Housing is difficult.”

“Affordable housing is impossible to come by here and they only allow them so much money so you are in a certain bracket…and there’s lots of landlords that won’t take people on social assistance or people with a mental illness.”

“What they give you don’t even cover the cost of a bed-sitting room.” Available housing was often described as unhealthy or even dangerous, with no standards upheld or enforced.

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“Yeah, but if you move are you going to go somewhere better or somewhere worse? You won’t know until you’re in there a couple of months and then you can’t keep moving every couple of months.”

“The housing that’s available is poor. Don’t have much of a choice as to

where they live. Noisy, dirty, cockroaches, drugs, alcohol – that whole scene – put people in stressful situations. It’s just not conductive to maintaining a lifestyle, trying to stay clean…”

“Some live in horrible places with mildew and cockroaches. We get some

who come in sick because their place is in such bad condition. Some boarding houses will not allow a tenant to be in their room during the day, they have to be out of the place by 8 in the morning no matter what – a snow storm, if he’s not working – it doesn’t matter. Rules like no TV in the room, or only allowed to watch TV for an hour a day – very controlling.”

“Government is not…or the city is not checking on them to see if they’re up

to standards and a lot of them are below standards. They’re falling apart. There’s bugs. They’re not fit.”

The inexpensive units offered by Newfoundland and Labrador Housing have long waiting lists and the access criteria around employment often make it difficult for some to stay there.

“I have been on the waiting list for Newfoundland and Labrador Housing for three years.”

“Right now I’m with Newfoundland and Labrador Housing but as soon as I

go to work full time I won’t qualify… which is a problem because what if 6 months down the road I’m part time again and I’ll have to go back on the waiting list…”

Job Opportunities: Some of those interviewed thought that more businesses should be open to hiring clients from Mill Lane as “Auntie Crae’s” does now. An employment agency that would help find job opportunities in the community was also suggested.

“The city and some businesses do help financially. But I think they could help by offering some job opportunities, a progression from Mill Lane.”

“I’d like to see more support from businesses for jobs; more employers

offering work for our people…there are a lot of businesses out there that could be hiring our people…like lawn care companies and such.”

“It would be good to have an agency that looked for employment for clients

beyond Mill Lane. What Mill Lane has done to save health care costs is significant and it would be good to have some investment back in helping them move on into positions in the community.”

Other Centers: A suggestion was made for community support through corporate sponsorship of other centers for mental health clients using a Clubhouse model.

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“I would like to see supports in the community for people who cannot get

into this program. There’s a whole whack of people who can’t work here, who need something else like maybe a Clubhouse. So that when I have someone that’s not working out and I have to let them go, right now it’s like ‘Good-bye’ – there’s no other place for them to go unless they want to go back to the Waterford. So we need to get corporate support for other centers going and it wouldn’t hurt to get some government support as well.”

Health Care STRENGTHS: Clients of Mill Lane are perceived as not as isolated as some mental health consumers, and are thought to be more knowledgeable about health care and access to services.

“As a general population of clients compared to other populations with mental illnesses they can advocate nicely for themselves to their case manager, to the emergency departments…the Crisis Centre …for adjustment of their medications or crisis intervention…They seem to be more self sufficient…”

“I don’t have a problem. I see my psychiatrist regularly. I see my family

doctor regularly. I’m treated with the greatest respect…” “I have a case manager, and I keep in touch with my doctor once every 6

weeks. The main reason I go this often - cause I could see him after 3 to 6 months - seeing these people always reminds me that I have this illness and I must take my medication. If I forget about going to the doctor then I forget about my metal illness and my medications. The day you forget, you get sick again.”

Other positive aspects in health care for Mill Lane clients are the efforts to coordinate with the medical school to educate doctors about mental health.

“We’ve started to work… with [name] - he’s in charge of clinical clerks at the medical school… we are going to… have every class, every couple of months do a tour down here… explain what the program does, what we are trying to do…(clients) are going to sit with the clinical clerks and residents and talk to them about things like, how they would like to be treated, things that dis-empower them, how they can make this better….Over time we are hoping to have placements here for residents…I think if you are only seeing people when they are really sick then how do you know the whole person?”

ISSUES: Some common issues of mental health consumers revealed in the interviews and focus groups include: the discrimination mental health consumers face from the health care system, hospital admission criteria, access to certain health care services, a general lack of communication within the health care sector and the need for alternative care options.

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Discrimination: Several key informants and focus group participants were concerned about the way in which mental health consumers were treated in parts of the health care system.

“There are people here who if they needed to be admitted for their illness refuse to go to the Waterford and insist on the Health Science or St. Clare’s. And now that St. Clare’s cut out their psych ward, there are those who need to be admitted but refused to be admitted if they have to go to the Waterford.”

“I’ve worked at the Health Sciences in psychiatry and at the Waterford in

psychiatry – there’s a whole different level of respect that occurs at the HSC vs the Waterford. It’s just amazing…I know if I were to be admitted tomorrow for a mental illness I would go to the Health Sciences, I would never go to the Waterford.”

One participant related a story of a friend on regular medication for his mental illness who was dying of cancer in hospital. The hospital did not allow him access to his regular medication and subsequently his mental health deteriorated along with his physical health. This was doubly hard on him and on his family.

“It was almost as if they decided that he didn’t need the medication since he

was going to die anyway... I would like to see that if I am physically sick and in the hospital, that I will still have access to my medications for my mental health.”

At the present time, the health care system is not very empowering for the patient, especially for the mental health patient. More resources to enable clients to take more responsibility for their own health would encourage them to ask questions and become more aware. This would help in changing attitudes within the health care system.

“A lot of them don’t find the psychiatrist very empowering. When the see them it’s ‘How are you sleeping? Any trouble with your bowels?’… a lot of the time the psychiatrist won’t tell the person what their diagnosis is and don’t explain.”

“The biggest thing in the health care system for people with mental illness is

that they are totally powerless. I still think they are a very, very disempowered group…being in the hospital is disempowering anyway…. But it is much worse if you are there for a mental illness.”

“Having a resource to teach them what services are available out there.

Like for instance, I’m not familiar with the crisis center. If I had a book, a directory, with that sort of information that would be helpful.”

Hospital admission criteria: Admission to hospital was an issue for some interviewees. Some were frustrated with the criteria or lack of criteria that rejected some consumers who needed immediate attention/admission and admitted others that did not.

“…some people have trouble with accessing help in a crisis… they are having problems controlling their mind and when they get to a certain point they go for help… (doctors, nurses etc) see them and just because that person can speak to

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them and make sense, then the doctors and nurses assume that they are not really in crisis and they dismiss their concerns…”

“…what is really frustrating is that you sometimes can wait for hours there.

I went with one of our clients who was suicidal and we waited and waited and she wanted to go home but I talked her into staying…”

“I don’t know if it’s the lack of beds or what but it’s very frustrating seeing

patients that are either homicidal or suicidal and need to be admitted and they get sent home. You almost have to threaten to get admitted. It’s shocking to say, but it’s true.”

Key Informants suggested that triage, admission criteria and follow-up for mental health consumers needs changing to address the seriousness of the illness.

“I think this is the biggest problem right now. I think they need to look at the admitting criteria. I mean it’s different if you have a sprained ankle compared to suicidal…”

Medications: The high cost of medications was an important health care concern for mental health consumers. It is a deterrent to obtaining employment when medication costs are not adequately covered.

“I have concerns about paying for my own meds. I know that Social Services is making changes to help people with their medications. I know two cases where they are working and their meds are still taken care of. It used to be 6 months but now they’ll even do it longer than that depending on the situation and that’s great…”

“…I qualify for Blue Cross insurance so I’m covered for most things. But if I did not have Blue Cross I don’t know what I would do. I was full time, see, but I got bumped back to part time but was able to retain coverage. It would be nice if they had something …even if it didn’t cover everything…There isn’t motivation to work if you have a lot of medication costs and can’t afford it.”

Social services: Participants of the focus groups (Mill Lane clients and waitlist clients) discussed the difficulty of obtaining social services and support through Health and Community Services and questioned the wisdom of the advice they received for access to services.

“Well, I tried for the last few years to get funding to go back to school and they kept telling me to get pregnant… housing is paid for…babysitting,…I mean I’m sick. I can’t take care of a kid….They’ve been telling me for years ‘get pregnant and we’ll take care of you.’”

“More funding from the government. I mean those of us that are out there

that are sick are different from the people that just don’t want to work. I think government needs to do an overhaul of the social services system… and I think they

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should try to live on social services… If I pay my bills, I don’t get any food. If I pay for food, I don’t get any bills paid.”

Communication: Communication is important for optimum health care, both between health care provider and client and also among a client’s health care providers.

“Some of the doctors are good in that they are open to listening but some are just ‘I am the doctor and you’re not.’ …There are very few psychiatrists in the system I deal with that there is an open kind of discussion. I don’ think the psychiatrists in the system are interested in promoting community development…some of them are good at what they are doing but some of them say they don’t have the time. But why they don’t have the time is because there isn’t anything in the community. If there were more things developed and on-going in the community then they wouldn’t have to be giving the amount of care they do.”

“Some physicians just medicate or recommend time off work if client is

under stress and then the client is home in front of the TV and does not work out their problem… Needs to be better communication between physician and others involved in client’s health care. Should be consultation to work out problems.”

Suggested ways to improve this communication include: a caseworker for all clients and working closer with the primary provider. Having a case worker or counselor for clients to rely on for support with medications/appointments and other health issues was considered important and beneficial. “I feel that there’s no one person that I can go to with my concerns.”

“Like I got a counselor but that’s with victim’s services and that’ll soon run out. So what do I do when that’s gone? Psychiatrists don’t have a whole lot of time to spend with you the way counselors do.”

“I think clients would benefit from having access to a dedicated caseworker, even if it could be just on a temporary basis for the problems that come up on now and again.”

“There is a perception by some that once clients come here to Mill Lane

they do not need a caseworker. This is not the case because they still need that support and help.”

“A lot of the clients at Mill Lane have a case manager. They are very

fortunate with that.” Working closer with doctors and caseworkers to improve communications and relationships would be educational to both sides and beneficial to clients.

“Don’t know how to change the criteria for admissions. We can only do so much, like going with them to the hospital. But if the hospital won’t admit them, we’ve done everything that we can do. But if there’s a change in medications I

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guess we can’t expect the doctor to call to let us know of the change… (but) if the case manager is told she could tell us.”

Alternative Care/Services: Some suggestions were offered by key informants for alternative programs and services. These include Assertive Case Management and Community Treatment Orders for community based care. Another therapeutic service suggested involved the use of music. Assertive case management: This is a more intensive case management system than is presently used.

“Assertive case management…they have a much lower case load – 10 is recommended. That model is common in Ontario. It is cutting edge kind of services. If I’m a consumer of mental health services and I required you as a case-manager to help me grocery shop or… to oversee that I am in fact taking my medication… then you make a real concerted effort to find me and say, ‘…did you take your meds? Are you eating well? It’s very intensive…it’s not just traditional case management.”

Community Treatment Orders: This is a similar intensive case management program.

“A lot of consumers do go off their medications, they don’t comply with their treatment, and when they’re not, they get very ill very quickly….a community treatment order… you are able to be discharged to the community but you are bound to take the treatment…and case managers oversee that. In a very intensive case management follow through…have to visit x often and if… the case manager sees that I am destabilizing then you may have to oversee giving the medication by injection. …There are a lot of ethical issues with that… but is it as invasive as keeping me in hospital?”

Music as therapy: A therapeutic music program was suggested for mental health clients because of the universal appeal of music.

“… a musical program – singing and instruments. So many people would benefit from something like this. It would be very good therapy because there are so many people interested in music, so many like singing. It gives them something to do too. If there was something available where you could go and learn something…”

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SECTION III: Discussion and Conclusions Work and Employment Both Mill Lane clients and staff agreed that productive employment was beneficial in many ways and contributes significantly to general health and well-being. Clients were more inclined to define the importance of work as something to keep them busy and as a distraction from their problems. Staff, on the other hand, saw work and employment in a broader context of not only providing consumers with the opportunity to be productive, but also improving socialization, self-esteem and offering social support. The benefits of the Mill Lane program for clients (as noted by both staff and clients) include: • a supportive clinical environment for mental health consumers

• work that is valued by the community • respectful staff • increased opportunities for socialization and interaction with the community • a social support network and peer group • improved self-esteem and confidence • a distraction and stress reliever • a structured day • decreased health care utilization

Improved socialization is also supported by the survey data (see Table 4, About My Spare Time): program clients were more likely than waitlist people to spend more time with friends (Clients 67.2%; Waitlist 58.1%), go out socially (Client 43.8%; Waitlist 22.6%), and they were less likely to feel lonely (Clients 26.6%; Waitlist 48.4%). In addition, our survey data and chart reviews support anecdotal reports of decreased health care utilization (see Figures 10, 11, 12, 13, 14, 15, 16). On the whole, program clients were very satisfied with the program and staff at Mill Lane Enterprises (Table 3). The fact that many would like to be employed somewhere else in the community (Figure 5; Clients 64.1%; Waitlist 29%) expresses their readiness to move on from Mill Lane and indicates that the program has been successful in this regard. However, transitioning from Mill Lane into community employment is a major concern for clients and staff. While it was agreed that some clients would never reach this next step, it was felt that many others could and should move on for their continued wellness. Presently, there is no infrastructure (employment counselor, resources, etc.) available for this progression. Other barriers to employment in the community were the loss of benefits that most clients would have to accept once they leave the Mill Lane Program, particularly the loss of medication coverage. Psychotropic medications can be very expensive, sometimes costing thousands of dollars per month, while jobs where most Mill Lane clients would likely be employed would pay minimum wage with no benefits package to cover medication costs.

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Clients and staff were enthusiastic about the potential for expanding the Mill Lane Program. Some suggested expanding the present physical space and increasing the program size to accommodate more people in need, and others suggested expanding the mandate and scope of the program. Suggestions for expansion of the mandate of the Mill Lane program included:

offering a broader range and variety of jobs under the present model; developing other models of employment to include other aspects of

rehabilitation such as socialization skills; augmenting Mill Lane within a broader model, such as a Clubhouse model

(see Appendix 6) where Mill Lane would provide the employment component

It was felt that a Clubhouse model would also provide a continuum of services for mental health consumers. This was an important concern expressed by participants who felt that many consumers are not well enough to qualify for the Mill Lane program as it exists now.

Community Clients and waitlist participants as well as staff of the Mill Lane program felt that the general public is not very understanding of mental illness, and this has led to many misconceptions and prejudices. It can also make the reentry into the community especially difficult for mental health consumers. Raising public awareness of mental illness and its issues and a strong advocacy program were considered important. Presently, the community has a variety of supports for mental health clients including social, recreational, educational and housing services. In addition, certain businesses, community groups and various levels of government have been supportive to the Mill Lane program. However, participants felt that more support from community businesses, the private sector and government is important to bring programs like Mill Lane to other areas of the city and the rest of the province. It was also felt that present community services and supports were fragmented, and as such, not as effective. Delivery of services through an umbrella program, which a Clubhouse model could provide, was suggested as a more efficient and effective use of resources. One of the requirements for entry into the Mill Lane program is for clients to have established stable housing for themselves. Several staff stated that because of this criteria, housing is not generally an issue for those employed with Mill Lane Enterprises. However, clients and other staff felt that housing is indeed a major issue for most mental health consumers, including Mill Lane clients. Obtaining affordable housing is difficult and the housing available is often dangerous and unhealthy, both physically and mentally. The inexpensive units offered by the City of St. John’s and the Newfoundland and Labrador Housing Corporation have long waiting lists and criteria around employment often make it difficult for a person to remain there if employment status changes.

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Health Care Self-reported utilization of health care services by the client group and the waitlist group had some notable differences. Compared to the client group, the people on the waitlist reported significantly more: • emergency room visits

• hospital admissions • days stay in hospital • visits to a family doctor

On the other hand, the client group was more likely than the waitlist group to access social workers/counselors and case managers. Since most of the health services utilized by clients and waitlist are for mental health issues, this suggests that the mental health of Mill Lane clients is more stable. They may also have access to more health support. Comments made by key informants and focus group participants suggest that it is a combination of both. That is, the Mill Lane program helps clients in the many ways that are noted above under “Work and Employment” but also provides a supportive environment where client’s concerns can be addressed or directed to resources other than the hospital. The General Well-being Scores indicate that program clients were healthier overall than those on the Waitlist. Severe distress levels of Mill Lane clients were significantly less (Figure 17; Waitlist, 48.4%; Clients, 34.4%; p< 0.05) and they felt less anxiety and depression, while having a greater sense of positive well-being and vitality (Table 5). Recorded utilization of health care services through chart reviews generally shows less utilization than self-reported utilization. This may be due to the fact that that visits to the emergency room or overnight stays in hospital, are traumatic for the individual and as such may be remembered as having happened more recently or more frequently than they actually were. However, the recorded data may be a conservative estimate because there are limitations to the chart reviews. These limitations are: firstly, we obtained participants’ charts from the two hospitals in the St. John’s area, though there is a possibility that participants were hospitalized in other centers in the province; secondly, visits to doctors, other than outpatient visits to the two hospitals, were not available to us for this time period; and thirdly, there may be some discrepancies due to the fact that participants were asked to recall the previous year’s utilization, i.e. from December 2001 through June 2002 (depending on when they completed the survey), while chart reviews were completed for April 1, 2001 through March 31, 2002. Nevertheless, though some of the results were not as statistically significant as the self-reported utilization data, those on the waitlist had more recorded health care utilization than participants of the Mill Lane program: 11% of Mill Lane client participants had visited an emergency room compared to 26% of the waitlist; 11% of Mill Lane clients were admitted to hospital compared to 39% of the waitlist; the average number per person of visits to the emergency room (0.903 vs. 0.203), inpatient hospital stays (6.1 vs. 4.4), and tests/procedures received during hospital stays (0.677 vs. 0.469) were less for the program

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clients versus the waitlist. On the other hand, visits to less resource intensive outpatient services were greater for the clients than waitlist. While not related directly to the Mill Lane program itself, a major issue for mental health consumers was discrimination within the health care system. Mill Lane staff Key Informants noted that health care professionals did not treat the mental health patient in the same respectful manner as a patient with a physical or medical problem. It was suggested that part of the reason for this discrepancy in treatment was that the relationship of health care provider to patient tends to be one of disempowerment for the patient, and this is even more so for the mental health patient. Establishing closer ties between Mill Lane and health care professionals, particularly at the training level was suggested as a way to improve empowerment, awareness and sensitivity. Criteria for access to services such as hospitals and social services were questioned, as was access to medication coverage while employed in low paying jobs. All participants felt that criteria need to be revised and made more flexible to fit the person’s circumstances. Also, many believe that some access problems can be helped or avoided if each mental health consumer had access to a caseworker who could provide individual and intensive support with medications, doctor’s appointments and other issues, such as housing. In the long run, such support could contribute to overall health. Conclusions This study shows that the Mill Lane program contributes significantly to positive health outcomes for program participants compared to non-participants. Compared to the waitlist, program participants are:

more social and less lonely have a greater sense of self-esteem and confidence have less distress, anxiety and depressions levels have a greater sense of positive well being and vitality utilize less health care resources such as visits to the emergency room, hospital

admissions, inpatient days stay, and procedures and tests Costing of recorded utilization (chart reviews) of both the participants and the waitlist, plus the cost of the Mill Lane program itself will be quantified and analysed at a later date in Phase 2 of this study.

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References

Joubert, N. and Stephens T., Health Canada. The Economic Burden of Mental Health Problems in Canada, Vol. 22 N01-2001. Facts and Figures: Mental Health and Mental Illness in Canada http://www.toronto.cmha.ca/c_media/m_statistics.asp#3 McDowell, I. and Newell, C., Measuring Health A Guide to Rating Scales and Questionnaires, 2nd edition. Oxford University Press, New York, New York. 1996.

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APPENDIX 1

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Division of Community Health, Faculty of Medicine Memorial University of Newfoundland &

Health Care Corporation, St. John’s

Title: Evaluation of the Mill Lane Program Principal Investigator: Dr. Michael Murray 777-6213 or 777-8571 Co-Investigators: Catherine Barrett, Susan Duff, Ted Callanan, Mary Dwyer, Doreen Neville, Linda Longerich Sponsors: Waterford Foundation, Department of Health and Community Services,

Discipline of Psychiatry, Memorial University of Newfoundland, Occupational Therapist Association of Newfoundland and Labrador

This consent form explains the study in which you have been asked to participate. It is your decision to participate in this study. We would like to explain why we are doing this study, what risks there may be for you and any possible benefits you might receive. The researcher will:

discuss the study with you answer your questions keep personal information confidential

If you decide not to take part in the study or to leave the study at any time, your employment with Mill Lane will not be affected.

Purpose: Mill Lane offers a supportive environment, which allows for socialization, skill building and work experience. The purpose of this study is to compare the health, quality of life and costs to the health care of Mill Lane clients compared with a similar group of individuals who are not participating in the program. Description of study procedures:

You will be asked to complete a survey about your daily life and work at Mill Lane. This should take approximately 20 minutes to complete.

You may be asked to participate in a small group discussion with other workers from Mill Lane to talk about the Mill Lane program.

To better understand the impact of the Mill Lane program on the health and well being of its workers compared to those who are not in the program, we need to document your use of health care services. We are asking your permission to access your medical records, (MCP, hospitalization records, and chart records) for the past four years.

Benefits:

You will not benefit by participating in this study. Liability statement:

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By signing this form you are giving consent to be in this study. It shows that you understand the information about the study. You do not give up your legal rights by signing this form. You may withdraw from this study at any time. Confidentiality: Your name and any identifying information will be known by only two research workers, all personal information will be kept strictly confidential. The survey that you fill out will have a coded number on it, not your name. No names will be used in any report or document about this study. No person anywhere will be able to identify your survey answer from any other answer. Your medical and mental health care and your position in the Mill Lane program will not be affected by your decision to participate in this study. You have been given a copy of this consent form. If you have any questions about taking part in this study, you can ask your doctor or meet with the investigator in charge of this study. Dr. Michael Murray 777-6213 or 777-8571 You can also talk to someone not involved with this study, but who can counsel you on your rights as a participant in a research study. Office of the Human Investigation Committee at 709-777-6974 E-mail : hic@mun.ca

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Signature Page IDNUM: _________ Title: Evaluation of the Mill Lane Program Principal Investigator: Dr. Michael Murray 777-6213 or 777-8571 To be filled out and signed by the participant: I have read the information sheet and understand what is involved in being in the study. I have had the opportunity to ask questions about this study and any questions I had have been answered. I understand that I am free to withdraw form the study

at any time without having to give a reason without affecting my future care or employment

I understand that it is my choice to be in the study and that I may not benefit. I agree to participate in the survey questionnaire Yes No I agree to participate in a discussion group Yes No I agree to have research personnel access my medical records Yes No My MCP number is: ______________________ __________________________________ _____________________________ Signature of participant Date __________________________________ _____________________________ Signature of witness Date To be signed by the investigator: I have explained this study to the best of my ability. I have invited questions and gave answers. I believe that the participant fully understands what is involved in being in the study, any potential risks of the study, and that he or she has freely chosen to be in the study. __________________________________ _____________________________ Signature of investigator Date

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APPENDIX 2

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Mill Lane Survey (Participant) IDNUM: _______(Form ML1) About Yourself 1. At which location are you working?

Cowan Ave Elizabeth Ave Water Street

2. Which work area are you in? Recycling Truck Woodworking Reception Textiles Meal Prep

3. What is your date of birth? ________/____/_____

Month / Day / Year

4. What sex are you? Male Female

5. What is your diagnosis (Check all that apply)

Schizophrenia Depression Bipolar Affective Disorder Post Traumatic Stress Disorder Obsessive Compulsive Disorder Anxiety Disorder

6. How long has it been since you were diagnosed with this illness?

Less than 6 months 6 months to 1 year More than 1year to2 years More than 2 to 3 years More than 3 years

7. Are you currently taking medications for your illness?

NO YES

8. Who referred you to Mill Lane? Doctor Social Worker Occupational Therapist Case Manager Self-Referral Other __________________

9. What type of housing do you live in?

Single, semi-detached or row house Apartment Mobile home Boarding house Shelter or hostel Other ______________________

10. What is your highest level of education?

Less than Grade 10 Some high school High school diploma (graduated from high school) Some University or Trades School Trades School diploma University degree

11. How long have you been in the Mill Lane/Evergreen program (most recent participation)

______ years

12. In total, how many years have you participated in the Mill Lane/Evergreen program? (include past participation as well as current) ______ years 13. Why do you attend Mill Lane/Evergreen?

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About my Work at Mill

Lane/Evergreen The following section contains some statement about your work. Please indicate which answer best summarizes how you feel about this statement. 14. I do my work at Mill Lane/Evergreen

well with no problems All of the time ٱ Most of the time ٱ Some or a little of the time ٱ None of the time ٱ 15. I feel upset, worried or

uncomfortable while doing my work. All of the time ٱ Most of the time ٱ Some or a little of the time ٱ None of the time ٱ

16. I get along very well with people

that I work with at Mill Lane All of the time ٱ Most of the time ٱ Some or a little of the time ٱ None of the time ٱ

17. I feel that I don’t have a say in

how Mill Lane/Evergreen operates. All of the time ٱ Mo ٱst of the time Some or a little of the time ٱ None of the time ٱ

18. The Mill Lane/Evergreen

program is helpful to me Extremely so ٱ Very much so ٱ Some or a little bit ٱ Not at all ٱ

19. My work at Mill Lane/Evergreen is

boring Extrem ٱely so Very much so ٱ Some or a little bit ٱ

Not at all ٱ

20. I feel that Mill Lane/Evergreen helps

me to cope better with my illness All of the time ٱ Most of the time ٱ Some or a little of the time ٱ Not at all ٱ

21. I feel that Mill Lane/Evergreen helps me

cope better with my day-to-day life All of the time ٱ Most of the time ٱ Some or a little of the time ٱ Not at all ٱ

22. I found the orientation session prior

to working at Mill Lane Very useful ٱ Somewhat useful ٱ A bit use ٱful Not useful at all ٱ

23. I think the pay for my work at Mill Lane/Evergreen is Very good ٱ Adequate ٱ Could be more ٱ Definitely too little ٱ 24. What changes, if any, would you like to see in the Mill Lane/Evergreen program?

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About the Mill Lane Staff The following section contains some statements about staff. . Please indicate which answer best summarizes how you feel about this statement.

25. The staff assist me in doing my job well.

All the time ٱ Most of the t ٱime Sometimes ٱ None of the time ٱ

26. I feel the staff are difficult to approach about work issues that I may have.

All the time ٱ Most of the time ٱ Sometimes ٱ None of the time ٱ

27. The staff encourage me to make my own decisions and solve problems as independently as possible.

All the time ٱ Most of the time ٱ Sometimes ٱ None of the time ٱ

28. I feel that the staff do not respect me as a person

All the time ٱ Most of the time ٱ Sometimes ٱ None of the time ٱ

29. What improvements could the staff make in order to create a better work and therapeutic environment for you?

About Other Types of Work

30. If you had the opportunity, would you like to be employed somewhere else in the community other than of Mill Lane?

No → If No skip to Q34 Yes

31. If Yes, list some of the places you think you might like to work?

32. What type of work would you like to do at these places you listed above? 33. Would you prefer working

Part time? Full time ?

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About your Spare Time The following section contains some statements about your spare time; that is, not counting your time spent at Mill Lane/Evergreen. Please indicate which answer best summarizes how you feel about this statement.

34. I spend time with friends or talking to friends on the telephone. Every day ٱ Several times a week ٱ Not very often ٱ Never ٱ 35. I am bored in my spare time .

All of the time ٱ Most of the time ٱ Some or a little of the time ٱ None of the time ٱ

36. I go out socially with other people (visit friends, go to movies, bowling, church, restaurants, invite friends home) More than once a week ٱ At least once a week ٱ Not very often ٱ Not al all ٱ 37. I feel shy or uncomfortable with other people.

All of the time ٱ Most of the time ٱ Some or a little of ٱthe time None of the time ٱ

38. I enjoy my spare time.

All of the time ٱ Most of the time ٱ Some or a little of the time ٱ None of the time ٱ

39. I spend my spare time Mostly in activities with other people ٱ

Sometimes with other people ٱ Mostly in activities I do by myself ٱ Always in activities I do by myself ٱ

40. I feel lonely and wish I had more friends. All of the time ٱ Most of the time ٱ Some or a little of the time ٱ None of the time ٱ

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Health Care Utilization Form (HU1)

Now I’d like to ask about your contacts with health professionals during the past 12 months, that is from ___________________ to yesterday. 41. In the past 12 months, have you been a patient at an emergency room?

No→ If No, please skip to Q43 Yes

42. If Yes, how many times in the past 12 months have you visited an emergency room?

__________ times

43. In the past 12 months, have you been a patient overnight in a hospital, nursing home or other health care institution?

No → If No, please ship to Q45 Yes

44. If Yes, for how many nights in the past 12 months?

________ nights

45. Not counting when you visited an emergency room or were an overnight patient, in the past 12 months, how many times have you visited or talked on the telephone with the following? _____ Family doctor or general practitioner _____ Psychiatrist _____ Case Manager _____ Pastoral Care _____ Recreational Therapist _____ Mental health nurse _____ Other nurse _____ Psychologist _____ Mental Health Crisis Centre _____ Social worker or counselor _____ Occupational therapist _____ Dentist or orthodontist _____ Chiropractor or Physiotherapist _____ Speech or Audiology therapist _____ Eye specialist _____ Other medical doctor 46. In the past 12 months, have you seen or talked to an alternative health care provider such as an acupuncturist, homeopath, herbalist or massage therapist about your physical, emotional or mental health?

No → If No, please skip to Q48 Yes

47. Who did you see or talk to?

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48. In the past 12 months, have you attended a meeting of a self-help or support group?

No→ If No, please skip to Q50 Yes

49. If Yes, what group or groups did you meet with? 50. During the past 12 months, was there ever a time when you felt that you needed health care but didn’t receive it?

No→ If No, please skip to the next section: “The General Well Being Schedule” Yes

51. Thinking of the most recent time, why do you think you didn’t get care?

52. Again, thinking of the most recent time, what was the type of care that was needed?

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THE GENERAL WELL-BEING SCHEDULE This section contains standard questions about how you feel and how things have been going with you during the past month. I will read out the question and the six possible answers and I would like you to choose the one that best describes how you feel. Date: m m d d y y y y 1. How have you been feeling in general? 1. ٱ In excellent spirits (DURING THE PAST MONTH) 2. ٱ In very good spirits In good spirits mostly 3. ٱ I have been up and down in spirits a lot 4. ٱ In low spirits mostly ٱ .5 In very low spirits 6. ٱ 2. Have you been bothered by nervousness 1. ٱ Extremely so – to the point where I

or your “nerves”? (DURING THE PAST could not work or take care of things MONTH) 2. ٱ Very much so Quite a bit 3. ٱ Some – enough to bother me 4. ٱ A little 5. ٱ Not at all 6. ٱ

3. Have you been in firm control of your 1. ٱ Yes, definitely so behaviour, thoughts, emotions, OR 2. ٱ Yes, for the most part feelings? (DURING THE PAST MONTH) 3. ٱ Generally so Not too well 4. ٱ No, and I am somewhat disturbed 5. ٱ No, and I am very disturbed 6. ٱ

4. Have you felt so sad, discouraged, hope- 1. ٱ Extremely so– to the point that I less, or had so many problems that you have just about given up wondered if anything was worthwhile? 2. ٱ Very much so (DURING THE PAST MONTH) 3. ٱ Quite a bit Some – enough to bother me 4. ٱ A little bit 5. ٱ Not at all 6. ٱ 5. Have you been under or felt you were 1. ٱ Yes - almost more than I could bear under any strain, stress, or pressure? or stand (DURING THE PAST MONTH) 2. ٱ Yes - quite a bit of pressure Yes - some, more than usual 3. ٱ Yes - some, but about usual 4. ٱ Yes – a little 5. ٱ Not at all . ٱ6

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6. How happy, satisfied, or pleased have 1. ٱ Extremely happy - could not have you been with your personal life? been more satisfied or pleased (DURING THE PAST MONTH) 2. ٱ Very happy Fairly happy 3. ٱ Satisfied – pleased ٱ.4 somewhat dissatisfied 5. ٱ Very dissatisfied 6. ٱ 7. Have you had any reason to wonder 1. ٱ Not at all if you were losing your mind, or losing 2. ٱ Only a little control over the way you act, talk, feel 3. ٱ Some - but not enough to be or of your memory? (DURING THE concerned or worried about

PAST MONTH) 4. ٱ Some and I have been a little concerned

Some and I am quite concerned 5. ٱ Yes,very much so and I am very 6. ٱ concerned 8. Have you been anxious, worried, 1. ٱ Extremely so-to the point of being

or upset? (DURING THE PAST MONTH) sick or almost sick Very much so 2. ٱ Quite a bit 3. ٱ Some – enough to bother me 4. ٱ A little bit ٱ.5 Not at all 6. ٱ

9. Have you been waking up fresh and 1. ٱ Every day rested (DURING THE PAST MONTH) 2. ٱ Most every day Fairly often 3. ٱ Less than half the time 4. ٱ Rarely 5. ٱ None of the time 6. ٱ 10. Have you been bothered by any illness, 1. ٱ All the time bodily disorder, pains, or fears about 2. ٱ Most of the time your health? (DURING THE PAST 3. ٱ A good bit of the time MONTH) 4. ٱ Some of the time A little of the time ٱ .5 None of the time 6. ٱ 11. Has your daily life been full of things 1. ٱ All the time that were interesting to you? 2. ٱ Most of the time (DURING THE PAST MONTH) 3. ٱ A good bit of the time Some of the time 4. ٱ A little of the time 5. ٱ None of the time 6. ٱ

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12. Have you felt down-hearted and blue? 1. ٱ All the time (DURING THE PAST MONTH) 2. ٱ Most of the time A good bit of the time 3. ٱ Some of the time 4. ٱ A little of the time 5. ٱ None of the time 6. ٱ 13. Have you been feeling emotionally stable 1. ٱ All the time and sure of yourself? (DURING THE 2. ٱ Most of the time

PAST MONTH) 3. ٱ A good bit of the time Some of the time 4. ٱ A little of the time 5. ٱ None of the time 6. ٱ 14. Have you felt tired, worn our, used-up 1. ٱ All the time

or exhausted? (DURING THE PAST 2. ٱ Most of the time MONTH) 3. ٱ A good bit of the time

Some of the time 4. ٱ A little of the time 5. ٱ None of the time 6. ٱ

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APPENDIX 3

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APPENDIX 4

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Focus Group (Program Participant) Guideline Questions:

Employment: 1. Does work/employment affect your overall health? In what way?

2. What do you like most about Mill Lane Enterprises? 3. If changes were made in the Mill Lane Program, what do you think is important to keep? 4. What do you like least about Mill Lane Enterprises? 5. If changes were made in the Mill Lane Program, what do you think should be done away with?

6. As part of your employment at Mill Lane, what help/supports do you need that are not presently provided or inadequately provided?

7. There are several different categories of work/employment: eg.,Transitional Sheltered, Competitive, (see definitions provided). Which of these do you think is best for you? Given changes in your life and/or health, do you think your choice will change over time?

Community:

1. As part of your work/employment, what sorts of community support/help would you like to have available?

2. Outside of work/employment, what sorts of social and recreational activities would you like to have available?

3. Do you have housing concerns/problems? How do you think these can be helped/addressed?

Health Care:

1. What kinds of concerns/problems do you have with your health care? (problems with crisis intervention? medications? general health questions?)

2. How do you think these concerns could be addressed/solved?

Other:

1. Are there other programs similar to Mill Lane that you think should be developed? Why? How will they help? 2. Are there any other issues with regard to your future health and employment that you would like to comment on?

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Employment/Work Categories*

1. Independent Competitive Employment: The individual found the job on his or her own with no help from the agency. If there was minor help obtaining the job (e.g., constructing a resume), no support has been received since and no additional supports will be provided. 2. Assisted Competitive Model: This is a permanent position model. The support received is provided off site. This support includes support groups, resume writing, practicing interviewing techniques, etc. After the individual has gained employment, he or she can still receive any support necessary to remain on the job. This would include help maintaining benefits (particularly Medicaid for uninsured jobs), housing, relief of stress, feedback about difficulties on the job, etc. The employer may or may not know the person is in a rehabilitation program, the decision to disclose is left to the consumer. Agency staff are not involved in the hiring, firing, or training of the person. 3. Job Coach Model: These placements are permanent positions which were developed through an agency. The employer is aware that the person is from a rehabilitation facility and staff (job coaches or placement specialists) are on site during the training phase, thus, most of the other staff know the individual is from a rehabilitation facility. Following training, staff may or may not keep in contact with the employer for a certain amount of time to ascertain that everything is going smoothly. The consumer continues to have access to the staff and other supports of the agency. 4. Transitional Employment Model: These are temporary positions, usually only part time. Staff from the agency decide which consumer fills the job and trains the individual. The placement belongs to the agency. The consumer completes the normal personnel procedures that anyone else applying for the job would complete. There may or may not be an official interview (staff still have the final decision about who gets the job-this is just good experience for the consumer). These placements MUST pay at least minimum wage and are located in normal places of business. The consumer is paid by the employer and taxes are taken out. Most agencies provide fill-ins and consumers usually have the opportunity to try more than one TE. 5. Agency Paid Transitional Employment Model: This model differs in that consumers are paid by the agency rather than the employer. Taxes may or may not be taken out.

6. In-House Transitional Employment Model: The difference in this model is that the placements are located within the agency and not in the community. 7. Work Crew Model: These placements involve a group of consumers working with staff support. The group is paid as a whole and then the agency divides the money in order to pay the individual consumers. 8. Sporadic or Casual Employment (e.g., Odd Jobs): Within the last week, the consumer engaged in work activity for which he/she received some payment (e.g., yard

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work), but this is an irregular, informal work situation. There is no formal application or hiring process, payment is generally "under the table". 9. Sheltered Workshops: Sheltered workshops are groups of members who work together in an isolated setting where there is limited chance for interactions with individuals who are non-members. Many times the wages are below minimum wage and the workshop is located in the agency itself. 10. Non-Paid Work Experience: The consumer is actively and regularly engaged in work activity for which he/she receives no monetary compensation.

* Modified from the Center for Mental Health Services Programs: “Community Support – Measuring Psychosocial Rehabilitation Outcomes” http://www.mentalhealth.org/cmhs/CommunitySupport/research/toolkits/pn4toc.asp

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APPENDIX 5

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General Well Being Schedule: Subscore Labels and Question Topics* The six subscores are generated using the scores of related topics from The General Well-Being Schedule, as in Dupey’s model. The following is a list of the subscores, their range and the questions from which they are derived. Subscore labels Question Number and Topics Range of scores Anxiety 2. Nervousness 0 – 20 5. Strain, stress, pressure 8. Anxious, worried, upset 16. Relaxed, tense Depression 4. Sad, discouraged, hopeless 0 – 20

12. Down-hearted, blue 18. Depressed Positive 1. Feeling in general 0 - 15 well-being 6. Happy, satisfied with life 11. Interesting daily life Self-control 3. Firm control of behaviour, emotions 0 - 15 7. Afraid losing mind, or losing control 13. Emotionally stable, sure or self Vitality 9. Waking fresh, rested 0 - 20 14. Feeling tired, worn out 17. Energy level General health 10. Bothered by illness 0 - 15 15. Concerned, worried about health ________________________________________________________________________ *McDowell and Newell, 1996

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APPENDIX 6

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Appendix 6 – Programs and Services Access House Access House is a transitional housing service for people who, due to the

effects of mental illness, are having difficulty maintaining an independent lifestyle. It is offered through Health and Community Services St. John’s Region (133 Empire Avenue). Services include needs assessments, counseling, skills teaching, social/recreational activities, transition, and a network of community support.

CHANNAL The Consumer Health Awareness Network Newfoundland and Labrador

is a self-help network serving the needs of mental health consumers, providing a voice in the community that can advocate for the needs of its mental health consumers, and offering a safe and supportive environment. There are presently five chapters in the province (St. John’s office: 354 Water St.). Services include: mental health promotion, self-help, mutual aid, public awareness/education, presentations, outreach programs, meetings and newsletters.

Clubhouse The Clubhouse is a model of a comprehensive community-based programs of psychiatric rehabilitation facilitating social and vocational adjustment for people whose lives have been disrupted by mental illness. It is jointly run by consumers and staff, and depending on which components of the model are adopted, services can include: a maintenance unit, thrift shop, horticultural unit, clerical unit, food unit, vocational training program, transportation unit, occupational therapy, continuing care services, housing program, on-site rehabilitation services, clinic services, crisis services, psychiatric services, nursing services, social work services, and continuing care services.

Crisis Centre The Mental Health Crisis Centre and Crisis Line promote the

maintenance of good mental health by supporting individuals through mental health crises, and provides a 24-7 community-based mental health crisis intervention service. Toll Free Crisis Line: 1-888-737-4668

Emmanuel House Emmanuel House and Residence (83 Cochrane St., St. John’s) is a

residential program that provides counseling and support to individuals with social and emotional problems. Limited counseling services are also offered to non-residents.

Family Care Program The Family Care Program is a long-term supportive boarding home

program for persons with a mental illness provided through the Mental Health Program of the Health Care Corporation of St. John’s. It is a partnership between residents, home operators and program staff and is available through the Waterford Hospital Site. Services include assessing and training home operators, providing education, consultation and support to home operators, providing twenty-four hour crisis intervention, matching vacancies based on individual needs, providing social, nursing and case management expertise.

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Gathering Place The Gathering Place Inc. is a drop-in centre offering a hot meal on Mondays, Wednesdays and Fridays 11:00 am - 1:30 pm.

Longside Club The Longside Club helps people with disabilities to help themselves,

enhances daily living, provides a gathering place and peer support and builds self-esteem, especially through Longside Players theatre group. It also offers work force training through its cooking program.

Meeting Place The Meeting Place is a social and recreational center for clients of the

Mental Health program (Health Care Corporation, St. John’s). It is located at 300 Waterford Bridge Road, Waterford Site (white house across from the duck pond in Bowring Park). Hours of operation are Monday to Friday, 8:00am to 3:30pm. Activities available include music, cards/games, bowling, movies, Bingo, crafts, pool, art, mini-golf, yoga, darts, fitness, softball, walking, gardening, per visit, char groups, reading groups, horse grooming, outings, cooking/baking and special events.

New Beginnings New Beginnings is a program offered by Progressive Management and

Consulting Ltd. (25 Bareneed Road, Bay Roberts, NL) that teaches self-management skills that are required by employers. The program targets youth at risk and teaches them how to take control of their lives, seek out job opportunities and be successful in getting a job.

Pleasant Manor Pleasant Manor is a transitional housing unit. 44 Bennett Avenue; St.

John's, NF; A1E 2Y6; (T) 709-739-7329 Pottle Centre The Pottle Centre (323 Hamilton Ave., St. John’s) is a gathering place

which provides a social and recreational atmosphere for recipients of mental health services (past or present). Peer support and friendship help clients handle difficult situations and day-to-day life. The Pottle Centre also offers a basic literacy program.

PREP Program The PREP program (Preparatory Rehabilitative Employment Program)

helps individuals with mental health issues/illness to determine their readiness for work, make choices about the type of job they would like to have, and to identity their skills and learn how to meet workplace demands (Health and Community Services St. John’s Region (20 Cordage Place). The services offered include vocational assessment and counseling, community work placement, resume development and job search skills, training and education preparation, referral sources and community agencies.

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Teamworks T.E.A.M. Works is the newest program of occupational therapy at the Waterford Hospital. It aims to provide clients of the Mental Health Program with a continuum of productivity-based programming. Administrative support, promotional activities and equipment are provided by the Waterford Foundation. Services include photocopy service (includes collating, addressing and stuffing envelopes), paper shredding, cloth rag production, and leaf raking.