K-W Habilitation Services for Adults Evaluation Review

Transcription

K-W Habilitation Services for
Adults Evaluation Review
Final Report
January, 1998
Centre for Research and Education in Human Services
Table of Contents
Page
Introduction
3
Our Method of Gathering Information
5
Context for the Evaluation
8
Findings
16
Description of the People who Responded to the Survey
Understanding of K-W Habilitation Services for Adults
Satisfaction with Services
Critical Issues/Challenges
Directions for the Future
Themes and Recommendations
16
25
32
44
47
65
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K-W Habilitation Services for Adults Evaluation Review – Final Report
2
K-W Habilitation Services for Adults
Evaluation Review
Introduction
This report outlines the final findings and recommendations of the Evaluation Review of K-W Habilitation Services for adults. The report, prepared
by researchers from the Centre for Research and Education in Human
Services, is an internal document prepared for the Board and the Evaluation Committee of K-W Habilitation Services
A special thank you to the Evaluation Committee members (Loren Calder, Stephen Berger, Nora Prange, Lorraine Stavenow, Rhonda Caldwell, Wanda Hehn, Margaret Kinsella, Rose Blackmore) and all of the
KWHS staff who helped us in carrying out this evaluation review. Your
support and cooperation was wonderful.
The overall purpose of the evaluation was to review the satisfaction with the type and
quality of services provided by K-W Habilitation Services for adults and to generate recommendations for possible future service directions. This review was intended to help
everyone understand how to better respond to people’s needs.
We divided this report into the following sections:
The ways that we gathered the information (methodology).
Context of the evaluation review. The present structure of K-W Habilitation Services for adults will be outlined as will the broader environmental
context.
The evaluation review findings. The findings are organized according to
major headings found in the survey (description of participants, their understanding of K-W Habilitation Services, satisfaction with those services,
critical issues facing the organization, and suggestions for future service
directions).
Evaluation recommendations.
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3
During the evaluation process the leadership of KWHS decided to take the opportunity to
gather comprehensive information about perspectives from which we seldom hear. For
this reason the evaluation was expanded and became much larger than originally planned.
The most significant change happened during the survey mail out stage. The evaluation
grew from an original plan of sending out 200 surveys to having 719 surveys being
mailed or individually completed.
This type of inclusivity in program evaluations is rare and KWHS should feel proud of
their efforts. As researchers we feel that the findings of the review are strengthened by
the breadth of information collected. We also believe that the recommendations provide a
starting point for a process of change because they are built upon the experiences and
perspectives of individuals, families, people on the waiting list, the staff and board of
KWHS.
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4
Our Method of Gathering Information
The evaluation review of KWHS adult services included four phases: 1) orientation
(summer of 1996), 2) information gathering, analysis and interpretation, 3) presentation
of the findings, and 4) supporting the implementation of the evaluation results. This report summarizes how the information was gathered and presents the analysis, interpretation and findings.
Information for this evaluation review was gathered in two stages which are outlined in
the chart below. The stages of information gathering were designed to build on each other. That is, information from the first stage helped to determine the questions asked in the
second stage.
BUILDING BLOCKS OF THE
EVALUATION PLAN
Stage Two
719 surveys
3 participant observation settings
Stage One
3 focus groups
11 individual
interviews
Stage One
In stage one we held focus groups with family members, front line staff, and the Board of
Directors. We also conducted 11 individual interviews with senior managers (3), consumers (5), and people on the waiting list (3). The purpose of these focus groups and individual interviews was to identify critical issues related to adult services.
A total of 35 people participated in the interviews. There was a balance of perspectives
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from those involved in residential and vocational services. About one third of participants
had some involvement with both services. We also included representation from the various programs or services for adults.
Stage Two
Stage two was by far the largest information gathering stage in the evaluation review.
The purpose of this stage was to gather information about KWHS from the broadest perspective possible. We used two ways of gathering information in this stage: 1) a survey,
and 2) participant observation.
The survey represents the bulk of the information gathered in the evaluation review. The
findings of the stakeholder focus groups and individual interviews conducted during
stage one were used to develop the questions for the survey. We included multiple choice
questions where people were asked to select their preference from a list of options, and
open ended questions where people wrote in their own answers. The Evaluation Committee gave valuable feedback during the development of the surveys.
The surveys were piloted by 10 selected individuals representing the different stakeholder
groups within the organization. Because little change was made to the survey after the
pilot testing, these pilot responses are included in the findings.
The survey was mailed to all family members (220), all persons on the waiting list
(163), and a cross representation of selected front line staff/management (65). In addition, a simplified version of the survey was completed by Centre researchers during individual interviews with 174 consumers.
For individuals served by the organization whose communication abilities limited them
from completing the survey, “significant others” filled out the survey on their behalf.
These significant others were people identified by family members (or legal guardians) as
playing an important role in the lives of the individuals. Two significant others were
identified for each of these individuals. A total of 68 significant other surveys were
mailed out.
Despite our (and KWHS office staff) best efforts, we were unable to identify significant
others for seven individuals. However, of the 243 individuals served by the organization, a total of 236 had the opportunity to include their perspectives in this stage of
the evaluation.
Variations of the survey were designed for each of the stakeholder groups. The content of
the surveys was similar but their length and presentation differed (e.g., the waiting list
survey was much shorter; the consumer survey was simplified). Generally, people were
asked about themselves (a description about their involvement with K-W Habilitation
Services and demographic information), their understanding of K-W Habilitation Services, their satisfaction with those services, critical issues facing the organization, and
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suggestions for future service directions. The presentation of findings in this report is
organized into these five main sections.
Participant observation was another way of gathering information in this stage. Its purpose was to provide another opportunity for those who did not participate in the survey to
understand the perspective of individuals involved with the organization. A Centre researcher spent time in three locations: David Fisher Residence, Training Centre #3, and
Adult Developmental Services. The researcher participated in activities, made observations and wrote field notes. The Appendix contains the protocol that was used during the
participant observation. The researchers made field notes describing what they saw in
terms of the setting, the activities, the interactions and the decision-making processes.
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Context for the Evaluation
1. An Overview of K-W Habilitation Services for Adults
K-W Habilitation Services (KWHS) was incorporated in 1970 under the joint direction of
the Kinsmen Club, and the Association for the Mentally Retarded (now the Association
for Community Living). Over the years the organization has grown. Today KWHS serves
241 adult individuals in a variety of programs. KWHS, has 777 full and part-time staff
supporting its programs.1
The mission statement of KWHS (revised in 1989) is:
K-W Habilitation Services believes that individuals with developmental handicaps have the right to live in the community, to participate therein, and have the
right to those resources which would realize these goals. K-W Habilitation Services acknowledges that the primary responsibility for achieving these goals
rests with individuals and their families.
The 1989 special anniversary addition of K-W Habit describes the facilitating role the
organization plays in promoting the independence and integration of individuals.
“The implications of the new mission statement are broad and ranging. As an
agency, it means that we no longer “control and protect” individuals with developmental challenges [as mentioned in the previous mission statement], but recognize and respect the contributions these individuals and their families can make on
their own behalf. Individuals will have greater control over their lives and the
direction they wish to grow” (page 4, bolding added).
The K-W Habit anniversary edition also recognizes the importance of personalizing services “according to the needs of individuals.” (page 4). KWHS is aware of the “trend” of
individualized or person-centred approaches. “If we ever go to totally integrated, this will
happen because our clients choose this.”
1
This number (as with other numbers in this section) refers to the number of people at the time of writing
this report.
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Presently, KWHS has three divisions: 1) Children’s Services, 2) Residential Services, 3)
Vocational Services. This evaluation review deals only with Residential and Vocational services for adults. A partial organizational chart emphasizing services for adults
is found below.
K-W Habilitation Services
Organizational Chart
Children’s
Services
Residential
Services
Vocational
Services
David Fisher
Residence
(D.F.R.)
Kinsmen
Training Centre
Group Homes
(for 3-6 individuals)
Adult Development Services (A.D.S.)
Respite Care
Supported
Independent
Living (S.I.L.)
Community
Placement
Program
(C.P.P.)
Seniors Program
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Residential Services
The purpose of Residential Services is outlined below.
Residential Services, together with families and friends, provides support and
education for children and adults in all aspects of daily living with emphasis on
care, welfare, safety and security. Residential Services believes all people are
entitled to conditions of life that promote and safe guard their rights as integral
members of their community.
Residential services includes a number of different programs. Staff/consumer ratios range
from 1:5 to 2:3 depending on the specific residential setting.
David Fisher Residence (D.F.R.)
David Fisher Residence is located in the northwest corner of the City of Waterloo.
The area is rural and DFR is surrounded by farmland. During the summer and fall
of 1997 David Fisher Residence is presently undergoing major renovations and
many individuals are temporarily living in other places throughout Waterloo Region. Once the renovations are complete 26 individuals will live at D.F.R.
Group Homes
Presently KWHS owns and operates 18 group homes under the Ministry of Community and Social Services. These group homes are located throughout Kitchener
and Waterloo. Between three and six individuals live in each group home. A
breakdown of the number of group homes by the number of people living in each
home is listed below.
7 group homes for 3 individuals
Respite Care
KWHS offers respite care for adults. Individuals may stay in a residential facility
for periods of time ranging from one day and to one month. Respite care facilities
are located at David Fisher Residence. Interested adults and their families arrange
the conditions of respite care after the adult has seen the residence and met the
other people who live there.
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Supported Independent Living (S.I.L.)
The Supported Independent Living program offers visitation support for up to 34
adults living independently in the Kitchener-Waterloo area.2 In other words, support to adults living independently, is provided by KWHS residential staff. Each
staff person provides an allocated number of support hours, per week, to a number
of different adults. The support is provided under the Developmental Services
Act.
Vocational Services
Vocational Services does not have an overarching purpose statement. Rather, each of the
four vocational program areas have their own purpose statement. Staff/consumer ratios
are considerably higher in vocational services than in residential services (i.e., up to 1:15
in some vocational settings).
Kinsmen Training Centre
The Kinsmen Training Centre exists in a sheltered workplace that "provides a vocational program for Developmentally Handicapped adults to provide training in
the area of work skills as well as on going support and development in the areas
of communication, social, motor, leisure and cognitive skills to maximize an individual's vocational options and alternatives".
The Training Centre is located in the same building as the main KWHS offices on
Sydney St. in Kitchener. At the time of this evaluation review 140 individuals attend the Training Centre program. Staff/consumer ratios range from 1:8 to 1:15
depending on the specific work area.
The Training Centre offers both vocational and non-vocational options for adults.
Vocational training is provided through the completion of contract work from local businesses and industries. Individuals participating in non-vocational alternatives have the opportunity for development in a variety of skill areas.
Adult Developmental Services (A.D.S.)
The purpose of Adult Developmental Services is to "provide a life skills day program with options specifically geared to adults facing developmental challenges.
The various activities available are developed and implemented according to individual areas of interest and needs within the interest areas".
Adult Developmental Services is located in Waterloo and presently supports
2
This number includes the 10 individuals who moved within the S.I.L. from the recently disbanded apartment program.
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about 38 individuals with the support of 14 staff. Individuals are involved in the
same small group (i.e., three or four individuals) on a daily basis. Activities include recreation, leisure, non-segregated volunteer placements, self-care training,
self-awareness training and sensory stimulation.
Community Placement Program (C.P.P.)
The purpose of the Community Placement Program is to "provide a supported
program to assist individuals with developmental disabilities to obtain and/or
maintain employment opportunities within the community".
Four staff provide support to 37 individuals through the Community Placement
Program. An additional 17 individuals receive support both through the Community Placement Program and the ttraining Centre. Individuals are offered the following placement options: 1) volunteer placement, 2) work experience (a time
limited "adjustment" period), 3) training site (time limited skill development period), or 4) job placement as an employee.
Seniors Program3
The purpose of the Seniors Program is to "provide our seniors population with alternative programs and activities for their retirement years." Presently 8 seniors
are supported through the Seniors program. Individuals are involved in recreational and community acitivities.
Adult Services Committee
The purpose of the Adult Services Committee is to "review policies, identify needs and
make recommendations to the Board on all matters pertaining to adult programs." The
Committee is guided by the following five goals of adult services.
Providing personalized residential programs and services which approximate
what is normal for that age.
Supporting and assisting individuals living at home with their families, or on
their own.
Expanding the range of employment opportunities.
3
About the time of writing this final report, the Seniors Program became supervised residentially and fell
under the umbrella of “Alternative Day Programs”. However, because the Seniors Program was a Vocational program during data collection, it remains under Vocational Services in this report.
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Developing the range of vocational assessment and training opportunities.
Developing a range of non-traditional/non-vocational adult day programs that
focus on the individual needs.
The first two goals relate to living arrangements and the last three goals relate to day time
activities.
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2. Environmental Context
The purpose of this section is to provide background information that will help us to understand some of the findings of the evaluation review of KWHS.
Statistics indicate that Canadian citizens with developmental disabilities have an increasing presence in our communities. At the time of the 1991 Canadian census, 239,000 Canadians lived in institutions, a decline of almost 40,000 since 1980. Current estimates
indicate that about 200,000 Canadians continue to live in large facilities. According to
the Roeher Institute (1996), in 1981 there were 694 residences for individuals with developmental disabilities with an average setting supporting 26 people. A total of 420 residences accommodated 4 to 9 people. By 1992, however, there were 1,329 residences
supporting an average of 14 persons. A total of 1,088 places accommodated 4 to 9 people (p. 52).
Values and principles supporting community alternatives to institutions have also
changed over the last 25 years. In the early 1970s Wolfensberger’s (1973) philosophy of
normalization began to influence social policy in Canada by emphasizing the value of
ordinary life experiences for citizens with disabilities. In the 1980s social role valorization complimented normalization by examining how social roles define who we are and
how others see us (Wolfensberger, 1983).
Government policies during the 1970s and 1980s, intended to enable consumers to live in
community settings and have programs or services funded through an organization rather than resources being allocated to consumers (Pedlar, 1994). For example, the emphasis was on providing segregated community based services. Individuals generally
lived in large group homes, went to segregated schools and worked in sheltered workshops (NIMR, 1981). These services were in rather than of the community; in other
words, people were not connected to community life in meaningful ways.
During the last decade, however, the importance of recognizing needs of consumers, the
provision of supports and structures to meet their needs, and the central role of selfdetermination has also grown in importance. There are many different ways to provide
individualized services and supports based on the needs of consumers (Lord & Kappel,
1994). Individualized planning approaches, such as person centred planning, help individuals with developmental disabilities to gain control of their lives, the services and
supports they receive, and the ways in which they participate in the community. These
approaches contrast with service planning which tries to match an individual’s needs with
the pre-existing services. Individualized supports contribute to personal empowerment,
are responsive, interactive and encourage consumer control. Examples of individualized
supports include support clusters, support networks, and wraparounds.
Individualized funding is cited as the funding mechanism that is most oriented to the consumer. The Special Services at Home program is an Ontario example of the government
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14
providing funding directly to consumers. The Roeher Institute (1993) identified many
different ways to undertake individualized funding. The approaches range from providing financial support based on individual needs to giving a fixed number of dollars to individuals regardless of differences in their needs. The approaches also varied in the extent
to which support networks of the individuals were involved in the process (Pedlar, 1994).
Increasing attention is also being paid to what is meant by “building community” or “increasing community capacity”. One study, being conducted at this time, defined community capacity as consisting of two important elements: the “collective strengths and talents of people within the community that help things work well (i.e. its capabilities) and
the external conditions not controlled by the community, such as the environment and the
economy, that influence how things work (i.e. which act as facilitating conditions or obstacles) (Jackson, Cleverly, Poland, Robertson, Burman, Goodstadt, & Salsberg, 1997).
This type of study helps us to understand how we can help to increase the community involvement of consumers.
Some of these trends from the literature are reflected, in part, in the new directions being proposed by the Ontario Ministry of Community and Social Services
in Making Services Work for People. MCSS is proposing that the system that
serves people with developmental handicaps change in three main ways: better
coordination of information, agencies working together and people receiving the
supports they need earlier. At the time of this report communities are engaged in
planning processes with the MCSS in order to develop community specific interpretations of the policy directions.
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Findings
1. Description of the People who Responded to the Survey
The purpose of this section is to describe the people who responded to the survey. From
our survey responses we were able to hear the perspective of four different groups of
people within the organization (we called them “stakeholder” groups because they all
have an interest or “stake” in the organization). The stakeholder groups included: front
line staff/management (whom we call “staff”), family members, people on the waiting
list, and consumers4. The surveys for each of these groups are included in the Appendix.
Chart #1 shows the number of surveys mailed out and the response rate for each stakeholder group. In the chart we included “significant other” as a separate stakeholder group
in order to compare their response rates with other groups. 719 surveys were mailed out
and 435 were completed for an overall response rate of 61%.
Chart #1
Response Rates for the Surveys
By Stakeholder Group5
4
Unless specifically mentioned otherwise, the consumer findings in this report include the results from the
significant other surveys. These surveys were filled out on behalf of consumers with limitations in communication skills, by someone close to them.
Surveys “sent” to consumers represent the number of consumers given the opportunity to complete a survey with the assistance of a researcher. Some consumers were not present during any of the interview
times, others chose not to participate.
5
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From the chart above we can see that consumer and staff stakeholder groups have the
highest response rate in the survey and people on the waiting list had the lowest response
rate.
We were encouraged (and surprised) by the size of the overall response rate of 61% for
the surveys. It is also important that people who did respond often wrote at length about
their opinions and suggestions.
Charts #2-4 compare some of the key characteristics of respondents across stakeholder
groups. Following these charts, we will describe the people from each stakeholder group
separately and in more detail.
Chart #2 shows the age groupings of the stakeholder groups. The majority of staff and
consumers were under the age of 45, while the majority of family members and people on
the waiting list were older than 45.
Chart #2
Age of Respondents
Chart #3 shows how respondents are presently involved at KWHS. We can see a wide
range of involvement within KWHS across all stakeholder groups. Waiting list involvement refers to the program area within which consumer family members are presently
involved, not the programs for which they are waiting. These findings speak to the depth
of experience from which respondents talk about and understand KWHS.
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Chart #3
How Respondents are Presently Involved at KWHS
D.F.R.
Staff
18%
Group
Homes
70%
Respite
Care
11%
S.I.L.
A.D.S.
C.P.P.
11%
Training
Centre
20%
18%
16%
Seniors
Program
3%
Family Members
13%
26%
4%
10%
47%
22%
17%
1%
People on the
Waiting List
Consumers
13%
0%
6%
2%
15%
9%
4%
0%
12%
23%
n.a.
10%
67%
14%
15%
3%
The length of time respondents have been involved at KWHS is shown in Chart #4. All
stakeholder groups had people who have been involved with the organization for various
lengths of time. Notice that the percentage of staff and people on the waiting list decreases over time. Also notice the high number of residential consumers (33%) who have been
involved with KWHS for more than 20 years.
Chart #4
Length of Time Respondents have been Involved at KWHS
Less than
2 Years
9%
2-5 Years
6-10 Years
27%
Family Members
7%
People on the Waiting
List
Residential Consumers
Vocational Consumers
Staff
27%
11-15
Years
18%
16-20
Years
16%
Over 20
Years
2%
15%
12%
22%
9%
32%
30%
26%
13%
15%
6%
2%
9%
19%
26%
11%
2%
33%
14%
19%
36%
18%
12%
13%
Staff
A survey was mailed out to 50 front-line staff members. Front-line staff were proportionately selected within each of the adult services program areas. As well, surveys were
mailed to all managers and directors (a total of 14 surveys). All staff were told that they
could request a survey directly from the study team. One staff person requested and completed a survey. This one survey was included in the analysis, as were two additional pilot surveys which were returned. Of the total 67 staff surveys mailed out, 44 were returned for a response rate of 66%.
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The majority of staff were female (84%) and between the ages of 31-45 (59%). Staff also
tended to be educated with 94% having completed high school and 84% having some sort
of post secondary education.
Staff described a variety of sources when asked how they first found out about KWHS.
The most common response was a job advertisement (33%). Other responses included
friends, family members, social service workers, and the school system.
When looking at the length of time staff were involved in the organization we found a
wide cross section. Thirty-six per cent were involved for five years or less, 27% between
six to ten years, and 35% for more than ten years.
Approximately one-third (32%) of respondents were involved in Vocational Services and
two-thirds (68%) in Residential Services. Staff were involved in a full range of programs
within these services both in the present as well as in the past.
One quarter (25%) of the respondents were management (managers and directors), while
three quarters (75%) were front line staff. Chart #5 shows the working arrangements of
respondents. Notice the near split between respondents who described themselves as fulltime (43%) and those who were not full-time (50%). It appears that KWHS is consistent
with the societal trend toward more part time and flexible work arrangements.
Chart #5
Type of Working Arrangement
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Family Members
A survey was mailed out to all family members (or legal guardians) of individuals involved with the organization. Of the 220 family surveys mailed out, 117 or 53% were
returned.
Nearly half (47%) of respondents were mothers, 21% were fathers, and 10% were siblings of individuals. Twelve per cent of people who completed the family survey were
professional staff filling out the survey in the absence of a family member.
People who completed the family survey were generally older (76% were over 45 years
of age; 32% over 65), spoke English most often in their home (94%) and lived in an urban setting (70%). The majority were female (76%) and did not have post secondary education (53%). Approximately one half of respondents lived in two parent families, and
one quarter in one parent families.
Thirty-six percent of individuals, associated with a responding family member, presently
lived at home with the family, while 53% lived in a group home or institution and 8%
lived independently.
Family members have generally been involved with KWHS for a long time (63% for
more than ten years). However, relatively few have been actively involved with the organization in a formal way. For example, 12% of responding family members have participated on the Board of Directors, on the Adults Services Committee or as a volunteer.
The majority of family members (64%) said that they preferred not to be involved in these formal ways.
Family members first heard about KWHS from a variety of sources, including: social
service workers (24%), the school system (21%), or the Association for Community Living (15%).
People who completed the family survey have family members involved in all aspects of
services for adults. Fifty-three per cent are involved with Residential Services, and 45%
involved with Vocational Services. The involvement of individuals has also been diverse
in the past. Over the years many individuals have moved around from one program to
another.
People on the Waiting List
A survey was mailed out to all people on the waiting list (both vocational and residential). The response rate for this survey was the lowest of all stakeholder groups. Of the
163 surveys mailed out, 47 (29%) were returned completed. Another 24 (15%) were returned uncompleted (mostly due to wrong addresses). Three surveys were returned and
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completed too late to be included in the statistical analysis. However, we did consider the
responses written to the open ended questions.
The majority of people who completed this survey were parents of individuals (79%)
wanting services. Some were siblings (9%), with the remaining being foster parents, professional guardians or the individuals themselves.
Respondents were generally older (72% over the age of 45) while at the same time most
(83%) were taking care of their family members within their own home. This combination of aging parents and home care helps to explain the sense of urgency and fear evident in the responses of people completing the survey. We will talk about this important
finding in more detail.
The majority of people completing the waiting list survey were female (74%), in an urban
setting (74%), speaking English most often in their home (94%), having some post secondary education (78%) and living in a two parent family (62%).
The majority of people (56%) have been on the waiting list for up to 5 years. Twentythree per cent have been waiting ten years or more. Similar to family members, people on
the waiting list said that they first heard about KWHS through social service workers
(34%), the school system (23%), or the Association for Community Living (13%).
We asked people on the waiting list for which service they were presently waiting. Seventy-nine percent of people were waiting for Residential Services, while 64% were waiting for Vocational Services. Chart #6 shows the specific programs for which respondents
said that they were waiting. Approximately half (49%) of the respondents said that their
family member was not involved in any KWHS program. Those who were involved were
so in a cross section of programs within adult services.
Chart #6
Programs for which People are Waiting
D.F.R.
15%
Group
Homes
28%
Respite
Care
9%
S.I.L.
23%
Training
Centre
26%
A.D.S.
15%
C.P.P.
23%
Seniors
Program
0%
We asked people on the waiting list to write down what was happening in the lives of
their family members as they wait for services from KWHS. Respondents repeatedly
talked about the difficult times they and their loved ones were having. Some talked about
the “frustration” of waiting and of the “hard time dealing with” their present situation.
Others mentioned that “things are getting worse”, that medical concerns are increasing,
and of the consumers’ “boredom” and “stagnation”.
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“He is languishing in a group home [non-KWHS] peopled with residents
years younger than him.…He feels like he is stuck in limbo. He yearns to
experience a full adulthood but is unable to do so, because he has been unable to move forward with his life.”
People mentioned that their family members were attending school or other day programs, working or volunteering part-time in the community, being active in recreation or
social activities or living at home.
Despite the many activities with which individuals were involved, there was an underlying sense that they were not enough. Individuals needed something more meaningful.
When identifying what the individual is presently doing, a number of respondents simply
wrote “nothing”.
Consumers
The perspective of consumers in this evaluation review was seen to be very important.
For this reason an extra effort was made to ensure that consumers had an opportunity to give their opinions. Of the 243 consumers affiliated with KWHS, 236 had an
opportunity to have their perspective represented in the evaluation.
We simplified the survey for individuals. Individuals were asked about their satisfaction
with where they lived and worked and if there was anything that they would like to
change about where they lived and worked. For some questions we used large pictures
and asked consumers to point to the picture which best suited their answer. Other questions we left “open ended” allowing consumers to respond in any way that they wanted.
See the Appendix for a copy of the consumer survey.
All consumer surveys were completed by researchers and consumers in a one to one private interview format. Interviews lasted on average 10-15 minutes, some being shorter,
others being considerably longer. Most interviews were held at the Sydney St. office.
Some were held in the consumers’ homes (either a group home or with their family). We
set aside one Saturday and one weekday evening for any consumers, who had not made
previous interview times, to “drop by” the Centre for Research for an interview. We
asked staff to fill out the demographic information on behalf of all consumers.
Of the 243 adults served by KWHS, 204 were given the opportunity to be interviewed. These individuals were selected based on the advice of KWHS staff. Staff chose
consumers whose communication skills were developed enough to answer at least some
of the questions. Staff then told these consumers that researchers from the Centre would
be coming and asking them if they wanted to be a part of an interview. A total of 174
consumers chose to participate in an interview. Ten consumers did not consent to participate, and 17 were not present at any of the interview times. The 87% response rate
from consumers was the highest of all the stakeholder groups.
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22
Forty-two individuals had communication challenges which limited their participation in
an interview. We tried to understand the perspective of these consumers in two ways: 1)
significant other surveys and 2) participant observation. The information gathered by these two methods together helped us understand the perspectives of these individuals. The
two information gathering methods are described below.
Significant Other Survey
Family members of consumers with communication challenges were asked to
identify two “significant others” considered to be close to the individuals. The
significant others were mailed a survey which was similar to the survey given to
consumers. Significant others were asked to complete the survey on behalf of the
individuals. We were able to obtain names of significant others for 35 individuals
and we sent out 68 surveys (two consumers had only one significant other identified). Fifty-three significant other surveys were returned (78% response rate)
representing the perspective of 30 consumers.
Participant Observation
The purpose of gathering information through participant observation was to provide another opportunity to understand the perspective of those individuals involved with the organization who did not participate in the survey. A Centre researcher spent time in three locations which had the highest number of consumers
with communication challenges: David Fisher Residence, Training Centre #3, and
Adult Developmental Services. The researcher participated in activities, made observations and wrote field notes.
Throughout this report, we combined the consumer interviews and significant other surveys together when describing the consumer findings.
The majority of consumers (54%) were between the ages of 31 and 45. One quarter of all
consumers were over 45 years old. The gender break down was roughly equal: 54% male
and 43% female.
Approximately one-half of consumers (47%) lived in KWHS residential settings. The different types of KWHS settings were well represented (see Chart #3). Those consumers
not living in KWHS settings mostly lived with their family, or in another organization’s
residential home. A small number of consumers lived on their own.
From Chart #7 we can see that the majority of consumers were involved in the Training
Centre. The Seniors program, as the smallest vocational option, had also the lowest representation. Eight consumers were not involved in any KWHS vocational settings.
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Chart #7
Number of Consumers Involved in Vocational Programs6
In Chart #4 we see that the range of time that consumers have been involved with KWHS
is broad both for residential and vocational settings. Some consumers have been involved
with KWHS for a long time (particularly in residential services). Others have been involved for a much shorter time.
6
Some consumers were identified as being involved in more than one program (e.g., both C.P.P. and Training Centre). For this reason the number of consumers in the chart exceeds the total number of consumers
(204) whose perspectives were included in the study.
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24
2. Understanding of K-W Habilitation Services for Adults
We asked people questions about their understanding of KWHS adult services. People
were asked to tell us how clear their understanding was, and what their understanding
was of a number of different aspects of KWHS. Consumers were not asked these questions.
Chart #8 below vividly shows that, overall, staff have the most clear understanding of the
adult services programs. People on the waiting list have the least clear understanding.
The chart also shows that Group Homes is the most clearly understood residential program across stakeholder groups the exception being for people on the waiting list who
best understood David Fisher Residence. The Training Centre was consistently reported
to be the most clearly understood vocational program across groups.
Chart #8
Clarity of the Purpose of Programs
Respondents Answering “Clear”
We found another two interesting facts about staff’s clarity regarding adult services programs. Residential staff were less clear about vocational programs than vocational staff
were of residential services. On average, 61% of residential staff said that they were
“clear” about the purpose of vocational programs. Compare this to the 84% of vocational
staff who said they were “clear” about residential services. The other striking fact was
that management was much clearer about the purpose of adult services programs than
were front line staff.
People were also asked about how clear the role of different stakeholder groups were
to them (the groups being consumers, front line staff, management, family members,
people on the waiting list, and the Board of Directors).
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25
Chart #9 below summarizes our findings. Again we see that, overall, staff (both front line
and management together) say that they are the most clear about the roles people play
within the organization. Again, people on the waiting list are the least clear, except this
time family members are not far behind.
The role of consumers is consistently the most clearly understood for respondents. The
role of the Board of Directors is, overall, the least clearly understood. When we look at
the different staffing roles we notice that the role of front line staff is more clearly understood than that of management.
One final observation: notice the relative lack of clarity that family members have about
their own role. Family members said that they understood the role of both consumers and
front line staff better than they understand their own role. In part, this may help to explain
why family members do not become involved with KWHS - they do not understand the
potential contribution that they could make to the lives of individuals and to the organization.
Chart #9
Clarity of the Roles of Stakeholder Groups
Respondents Answering “Clear”
We asked staff and family members what they thought were the roles of the Board, consumers, front line staff and family members. Chart #10 shows the top three roles described by respondents.
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26
Chart #10
Staff and Family Member Understanding
Of Current Roles
Role of Board
Who Said
it
Staff
#2
Response
Financial controllers
#3
Response
Policy makers
Policy makers
Financial controllers
Staff
#1
Response
Thinking about agency’s future
Thinking about agency’s future
Participant
Service recipient
Family
Service recipient
Client
Decision-making partner
Participant
Staff
Counsellor
Advocate
Family
Resource person to
consumers
Counsellor
Trainer
Staff
Advocate
Resource person to
consumers
Protector
Family
Protector
Advocate
Role model to consumers
Family
Role of Consumers
Role of Front
Line Staff
Role of Family
Members
Active participant
There was a high degree of agreement between family members and staff about the role
of the Board of Directors. Clearly, the Board’s role was seen to be visionary, while also
creating policy and controlling financial resources.
When looking at the role of the consumers we see a tension in both the staff and family
member perspectives. Roles such as “participant” and “decision-making partner” show
consumers as having an active role within the organization. Other words suggest a more
passive role for consumers. Consumers receive services both as “service recipients” and
as “clients”. While staff emphasized a more active role for consumers and family members a passive role, both stakeholder groups struggled with this active/passive tension.
Notice the different way in which the front line staff roles are viewed, in comparison to
that of family member roles. Front line staff are seen as “working with” consumers,
whereas family members tended to be seen as “doing for” consumers. Words such as
“resource person” and “counsellor” speak to roles which enable individuals without determining specific outcomes. Roles such as “protector” and “advocate” have connotations
of family influencing more control over the life to the consumer.
When we asked family members what they thought the role of family members was,
the response was clear. Protector, advocate and role model to individuals were by far the
most common choices. One family respondent suggested his/her own phrase: “patronized
outsider”.
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27
We asked staff, family members and people on the waiting list to write down what they
thought was the purpose of residential services and vocational services. We should
mention that the responses for these questions were lower for people on the waiting list
than for staff or family members. Even when they did respond, people on the waiting list
occasionally commented that they did not know the purpose of these services.
In simple terms, family members and people on the waiting list described the purpose for residential services as providing a home for consumers. Within this basic
purpose, however, there was a marked difference in understanding.
Again the distinction between “working with” and “doing for” consumers becomes helpful. Some respondents described residential services as being a care-taker, providing
“custodial care”, “protection”, “supervision” and “teaching”. This view saw KWHS as
doing things for consumers who otherwise were “unable to care for themselves”. Contrast
this with the almost equal number of people who wrote about residential services as being
a facilitator of “independence”, “dignity” and “potential”. People who held this view
talked about enabling, or working together with consumers “to lead as normal a lifestyle
as possible”. While the first view emphasizes the deficits of consumers which KWHS
can help to minimize or develop acceptance of, the second focuses on the strengths within consumers that KWHS can support. These differing views are illustrated in the following quotations.
 “doing for”
“[The purpose of residential services is] to provide residence and supervision for those unable to do the same for themselves.”
 “working with”
“The purpose [of residential services] is to allow clients to live as independently as possible in the most enabling environment in the community.”
Staff respondents, on the other hand, were much stronger in emphasizing the facilitating
and enabling role of residential services. Consider this viewpoint from one staff person.
“[The purpose of residential services is] that our individuals will have the
same love, respect and freedom in the community as you and I have. That
they will feel free at home in the community in which they live.”
A summary of the staff perspective of the purpose of residential services is found in
Chart #11.
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Chart #11
Staff’s View of Residential Services
Residential services provides….
What
Description
Who
Why
We serve
Support
which is
Home Environment
Safe
Healthy
Secure
Caring
for people
With develop-mental
disabilities
so they can be
Independent
Integrated
Productive
Comfortable
Fulfilled
Content
Dignified
It is interesting to note that, staff:
seemed to link support and home environment together.
made limited reference to “personalized” supports and that only a few talked
about “all aspects of the lives of individuals” not just living arrangements.
acknowledged the role of family and friends in a limited way.
felt a tension between accounting for all people with development disabilities and
just the individuals involved with KWHS.
Providing skills training and supportive work environments were the most repeated
themes across all stakeholder groups when describing the purpose of vocational services. The rationale for teaching skills to consumers was wide-ranging: help consumers
to “find suitable jobs”, “earn a decent wage”, “learn skills they can use at home”, “do
simple work”, “work in the community”, “learn good work habits”, obtain “skills for living”, were some examples. The type of work environments consumers were supported in
also varied. For example, consumers should be supported in “work in the community”,
“a workshop”, “non-competitive employment”, “vocational or alternative activities”,
“community volunteer opportunities”, and “competitive employment”.
Other roles given for vocational services included providing a place for consumers to socialize with their peers and a place where consumers can go in order to “keep busy”,
“stimulated”, “ be active” and “prevent boredom”.
When describing vocational services respondents made considerably less reference to
“working with” and enabling participants to reach their potential when compared to residential services. Respondents placed a stronger emphasis on the “doing for”, care-taking
and maintenance role of KWHS. There was also a much more obvious reference to the
different level of “abilities” of consumers and the need for services to be tailored to these
different levels. Both of these emphases of care-taking and consumer level of ability are
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29
found in the words of one respondent.
“[The purpose of vocational services is] to provide a place of work for the
challenged adults. To provide training to those who are able to work in a
community, to provide a day program to those who are less capable.”
Compare this perspective to another respondent who emphasized the enabling role that
vocational services can play in encouraging personal growth, independence and potential.
“[The purpose of vocational services is to] provide options for community
opportunities, provide needed supports so that participants can achieve
their potential/choices.”
The role of the Adult Services Committee was very unclear to respondents. Over
one-third of both staff and family members said they did not know its purpose. We did
not ask people on the waiting list this question. Others (particularly family members) did
not respond to the question at all.
Respondents were asked to describe the role of the Adult Services Committee in their
own words. Analysis of the responses found a lack of clarity and consistency about the
role of the Adult Services Committee. Chart #12 summarizes the wide variety of opinions
mentioned both in terms of what the committee should do (“function”) and who the
committee is supposed to help (“target”).
Chart #12
The Purpose of the Adult Services Committee
(Staff and Family Member Perspective)
Function









Educate
Train
Assist
Review
Support
Recommend
Plan
Approve
Resource









Target
Decide
Discuss
Oversee
Protect
Lead
Monitor
Ensure
Advise
Improve








Board
Clients/Individuals
Front line staff
Management
Programs
Community resources
New service recipients
People living in apartments
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30
The confusing and complex roles of the Adult Services Committees was well demonstrated in the words of one respondent:
“[The purpose of the Adult Services Committee is to] make recommendations to the Board, help plan programs for adults, support to staff in adult
programs, support to parents, families with an adult in service, act as an
advisory committee to staff and Board, ‘rubber stamp’ admissions,
demissions.”
Management responses were the closest to the stated purpose of the Adult Services
Committee (see description of KWHS section), although there were some suggestions
that this role was no longer relevant and meaningful.
Findings of the individual and focus group interviews conducted during Stage 1 also suggested differences of opinion and a lack of clarity related to the role of the Adult Services
Committee.
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31
3. Satisfaction with Services
The next section of the survey dealt with what respondents liked and disliked about
KWHS adult services. We will report the consumer stakeholder group results first and
then report the results from the other groups.
a) Consumers
We asked consumers a number of questions about their satisfaction with living and working in KWHS settings. As discussed before, with those consumers whose communication
abilities prevented an interview, we asked people who were close to them (“significant
others”) to fill out surveys on their behalf. Results from both the consumer interviews and
the significant other surveys are combined below.
Charts #13-16 summarize the consumer findings according to how consumers were involved at KWHS. We divided vocational services into its specific program areas in order
to get a clear picture of each area.7 Residential findings deal with only those consumers
who live in KWHS residential settings (47% of all consumers we interviewed). We collapsed all residential findings together because most residential consumers live in group
homes, with relatively few people living in David Fisher Residence (26) and Supported
Independent Living (32-34). These decisions were made in order to preserve confidentiality and anonymity.
Overall, consumers were very positive about their experiences at KWHS. Chart #13
shows that this positive experience was consistent across program areas. The majority of
consumers felt “very happy” with where they lived, or spent their day.
Chart #13
Consumer Satisfaction with KWHS Programs
7
We did not include the Seniors Program in order to protect the confidentiality of the low number of consumers in that program.
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32
We asked consumers to be more specific about what they liked and disliked about where
they lived and spent their day. Charts #14 and #15 show the top three responses for each
program area.
Chart #14
What Consumers Liked about KWHS Programs
Program
#1 Response
#2 Response
#3 Response
The people I live
with/neighbours
Doing the type of
things I do
The people I spend the
day with
Doing the types of
things that I do
My leisure time at home
The people I work with
Doing things on my
own/doing chores
Staff/boss
Staff
Leisure activities
Staff/boss
Training Centre
Adult Developmental
Services
Community Placement
Program
Chart #15
What Consumers Disliked about KWHS Programs
Program
#1 Response
The people I live with
#2 Response
Noise
#3 Response
Loneliness/boredom
Training Centre
My pay
Adult Developmental
Services
Community Placement
Program
Not being able to do
what I want to
Doing the type of things
that I do/boredom
that I do/boredom
that I do/boredom
The people I spend the
day with
It was interesting to notice that as the interviews progressed respondents talked more
about the less positive aspects of their experiences at KWHS. When we asked questions
about their dislikes and what else they would like to do, some consumers clearly articulated their concerns. These concerns will be reported specific to each program area below.
Chart #16 graphs the answer to the question, “Who decided that you should live or work
here?” In all program areas the majority of consumers thought that KWHS staff had made
the decisions about the programs in which they should be involved. The Community
Placement Program (C.P.P.) and residential services were the two program areas in which
most consumers felt they had chosen for themselves. Parent involvement in decisionmaking was found to be highest among consumers working in the Training Centre (T.C.).
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33
Chart #16
Who Decided that Consumers Should Be in the
Program that They are?
We will now report consumer satisfaction according to program areas.
i) Consumer Satisfaction of Residential Services
From Chart #13 we can see that about three quarters (77%) of residential consumers were
“very happy” about where they live. Another nine percent said that they were “somewhat
happy” while 11% said that they were “not happy”.
Many consumers emphasized that they liked the people with whom they were living.
Some mentioned that they liked “to be with all my friends”, while others said that they
didn’t like living by themselves. A number of consumers talked about how well they “get
along” with their roommates and how they were able to meet new, friendly neighbours.
Having leisure time at home was also appreciated by many consumers. Being able to
watch television, go on day trips, to church, bowling, the movies or to social clubs were
all activities consumers enjoyed.
Being able to do things on their own was important for many consumers. Consumers
talked about doing “what we want to do on our own—no staff” and being able to “come
and go whenever I need to”. Independence was enhanced by having their own key and
being able to take the bus on their own to places they choose. One consumer said that
he/she felt “free” to do what ever she/he liked. Another echoed this sense of freedom, “[I]
can do anything—shop, drink, drive”.
Being able to do chores around their place of residence was important for many consumers. They expressed a sense of pride when they spoke about the work they did at home;
one person said, “I wash my dishes, chores all by myself. I make my own bed.” Ordinary
household tasks such as cleaning, cooking, shopping, budgeting, and getting the mail
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34
were all specifically mentioned by consumers as things they liked to do.
Another thing that consumers liked about where they lived was their privacy. Having
their own room and their own possessions (e.g., T.V.) was important for a number of
people.
The enthusiasm of living in a KWHS residential setting was expressed by one individual
in the following words.
“It’s the place on the face of the earth, that I can say that I like it here. I want to
stick it out here. I like everything...I’m learning all this…why not move outward
and upward.”
Although roommates or housemates were what consumers liked most about where they
lived, they were also by far the greatest source of consumer discontent. Nearly one quarter of consumers complained about their roommates, or housemates. These people were
accused of insulting, blaming, bugging, ordering around, fighting, name calling, pushing,
bothering, stealing, swearing, pinching, and making noise. Some people were very upset
with the actions of their roommates/housemates.
Other things that consumers repeatedly said were that they did not like noise, being lonely and boredom. Consider the words of the following individuals.
“Too much noise, got on my nerves. [I would] like to move out. I can
move when I want to.”
“I miss my parents a lot.”
“Sometimes I get bored in the evening if I don’t do anything.”
We asked consumers already living in KWHS residential settings where they would like
to live if they wanted to move. Chart #17 shows that about half of the consumers (48%)
would prefer to live in a city house while a quarter would like to live in an apartment.
Fourteen percent said that they would like to live in a country house.
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Chart #17
Where Consumers Would Like to Live
We asked consumers living in KWHS residential settings to tell us with whom they
would like to live (i.e, if they wanted to move from their current home). Chart #18 shows
the results. Living with a family was the most common response (31%). Living with a
group and living with one other person were each preferred by 24% of consumers. Thirteen percent of consumers wanted to live alone. One of these individuals had this to say
about living alone.
“With support I do eventually want to move out. I know it might be dangerous. I can do a lot of things, but I shouldn’t be alone all the time.”
Chart #18
With Whom Consumers Would Like to Live
Some consumers were very clear that they had no intentions of moving. They reemphasized that they liked living where they live now.
“I don’t want to move. I want to stay here. I want to stay at my place. My
mother told me not to move because there are strange people.”
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36
ii) Consumer Satisfaction of Training Centre (T.C.)
Nearly three quarters (74%) of consumers working in the Training Centre said that they
felt very happy there. As one consumer said, “I like my job so much. It makes me feel
happy”. Fourteen percent (14%) said they were somewhat happy, while seven percent
(7%) said they were not happy.
Fifty-eight percent of consumers mentioned that they liked doing the activities at the
Training Centre. Individuals listed the type of work that they were presently doing or had
done in the past. A number of people mentioned that they enjoyed the variety of activities. “Do a lot of different things, it is a change from [one] day to next.”
Approximately one-half (52%) of consumers said that they liked working with their coworkers. Many talked about enjoying working with their “friends”, being able to talk to
them, tell jokes, and celebrate birthdays. Some consumers liked the fact that they knew
some co-workers from previous settings. Others appreciated the opportunity to further
develop their network of friends, “meeting new people and making new friends.”
Consumers also talked about liking the KWHS staff with whom they worked. Some individuals said that they enjoyed talking with staff and joking around with them. Others
liked it when staff helped them to do their work.
Receiving pay for their work was another positive aspect of working at the Training Centre. Consumers had different perspectives on the amount of their pay. Some talked about
getting “pocket money”, others about “good money” or “lots of money”. Consumers occasionally tempered their comments by acknowledging their recent reduction in pay.
Some people were clearly upset about this whole experience. One person appreciated the
fact that “you have to work in order to get paid”.
The fact that they were able to “have something to do” was important to a number of
consumers. They spoke of liking to keep busy, having more rather than less work and doing something “instead of being at home and doing nothing”.
When talking about what they disliked about working at the Training Centre, the most
common response by consumers was the people with whom they worked. Approximately
one quarter (23%) of consumers complained about their co-workers. These complaints
tended to be much longer than other responses and often more passionate. Fighting and
noise was repeated over and over again as being too common at the Training Centre. Coworkers were accused of swearing, hitting, whispering, pushing, bossing, screaming,
stealing and “saying things behind my back”. One consumer reported that they did have a
special meeting about this problem and were told by staff to be nice to co-workers.
Lack of work, or work which is too difficult to do was another aspect of the Training
Centre that consumers disliked. Consider the words of the following individuals.
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37
“[I] hate if the boxes are around, screw nails are too tough.”
“Not enough work for me. Some people work but I am not.”
“[I] want to have enough work. Don’t want to sit around doing nothing. If
there is nothing to do, should go home.”
A number of consumers mentioned that they did not like their “little pay” or the fact that
their pay had recently decreased. One consumer said that he/she wanted her/his pay to
“go up, not down”. Another mentioned that he/she was “not happy with cutting wages,
that hurts”. The word “cutbacks” was used by a few consumers to make sense of the reduction in wages, blaming the government for their decrease in pay.
iii) Consumer Satisfaction of Adult Developmental Services (A.D.S.)
The majority of consumers at Adult Developmental Services (ADS) had significant others complete the survey on their behalf. Five consumers at ADS were interviewed by researchers.
The majority (72%) of consumers felt “very happy” about being at ADS. Seventeen percent were “somewhat happy” while 11% felt “not happy”.
Eighty per cent of consumers indicated that they liked the people with whom they spend
their day. The opportunity to spend time with others was seen to be the most positive aspect of ADS. Consumers were also seen to like the staff at ADS. One consumer commented that a staff person was his/her “friend”. Another consumer said that he liked it
when a staff person played his guitar.
Being able to participate in leisure activities was another aspect of ADS that consumers
liked. One significant other respondent said that the consumer enjoyed “being outside,
away from hustle and bustle”. Taking part in community activities was also appreciated.
A number of significant others commented that consumers enjoyed their volunteer
placements in the community.
Not being able to do what they wanted to was what consumers disliked the most about
ADS. A significant other commented that the consumer does not like “doing an activity if
[he/she] feels like [he/she] is not making the choice”. Consumers also did not enjoy some
of the activities with which they were involved although no specific activities were mentioned.
The noisy, crowded environment was another factor that consumers did not like about
ADS. A number of significant others wrote about ADS being overcrowded with not
enough attention given to individuals.
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38
iv) Consumer Satisfaction of Community Placement Program (C.P.P.)
Over three quarters (77%) of consumers involved with the Community Placement Program (CPP) said that they were “very happy” with how they spent their day. Twelve percent said that they were “somewhat happy” and seven percent said “not happy”.
Consumer involved with the CPP said that they liked doing the types of things that they
did. Similar to the individuals working at the Training Centre, consumers listed the various activities that they enjoyed doing in their work or volunteer placements. The variety
of experiences the placements afforded was appreciated by consumers.
Consumers also spoke about “getting along well” with their co-workers and the opportunity of meeting new people as a result of their placement.
“I get along with people. Never give me problems.”
“Get to meet all kinds of people.”
“People talk to me and I talk to them. Really nice.”
Consumers acknowledged the supportive role that KWHS staff played in their lives.
Whether it was through the regular dinner meetings organized for CPP consumers, or in
individual meetings, consumers talked about the importance of talking with KWHS staff
and receiving their advice.
“[Staff] give me evaluation once a month. I like that. Go to job placement meetings helps me really good...Always gives me notes about the date of job placement meetings.”
“We have dinner meetings. They are good and I can see friends.”
Staff were also seen to give practical help in finding volunteer or work placements. Over
and over consumers talked about feeling supported by KWHS staff.
“If you get stuck—laid off, they help you. I’m just glad to have them to
help. If problems at work [occur], can call up and get help.”
“Helped me to find these volunteer jobs…They helped so much. Jobs were
hard to find. [CPP staff] have been so helpful to help me find these volunteer jobs. I’ve been having a hard time to find jobs on my own.”
“A good support over the years. Like a family. Whatever my decision is
they help me. They help a lot.”
“Get motivated to get started with career plans. Help to decide what I
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39
wanted to do because I didn’t know…It’s a great opportunity.”
Getting paid and having something to do were other positive aspects with the placements
consumers were involved. One consumer saw a number of positive aspects in his/her
CPP placement.
“You make a lot of money. Give me experience to learn what’s right and
what’s wrong. If you work really hard than it tells them that you are ready
for the next step, which is to work out in the community like anybody else.
I like to get along with people.”
There were a number of things that consumers did not like about their CPP placement.
Consumers mentioned that sometimes they had difficulties getting along with their coworkers. Other consumers talked about not liking to carry out certain required tasks. One
consumer complained about the heavy work, another about having to do a paid staff’s job
even though she/he was only a volunteer.
Consumers also spoke about not liking their low or non-existent pay.
“I want them to give me money. I have worked for three years.”
“One thing I hate very much. Don’t pay me for working at [placement]
anymore, because it’s my volunteer work.”
b) Staff, Family Members and People on the Waiting List
Staff, family members and people on the waiting list were also asked about their satisfaction with adult services. A number of different kinds of questions were asked.
We asked staff and family members how satisfied they were with both residential and
vocational services and how well they thought these services met the needs of adults
served by the organization. Charts #19 and #20 summarize these results.
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40
Chart #19
Satisfaction with Services
(Mostly and Completely Satisfied Combined)
From the chart above we can see that both staff and family members overall viewed adult
services favourably. Staff were much more satisfied with residential services (93%) than
with vocational services (50%) although, we recall, that the majority of staff surveyed do
belong to residential services. Family members were more consistent in their rating
across services (66% for residential and 65% for vocational). They were also more likely
to answer “don’t know” than staff (17% compared to 2% of staff).
From the chart below we can see that once again staff’s view of vocational services was
more critical than that of residential services (39% and 91% respectively). This time family members also slightly favoured residential services (62% versus 52%). People on the
waiting list thought that both services were meeting the needs of consumers roughly
equally (23% for residential and 25% for vocational). A relatively high percentage (28%)
of people on the waiting list stated that they did not know how well services were meeting consumers’ needs.
Chart #20
How Services are Meeting Consumers’ Needs
(Well and Very Well Combined)
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41
When we analyzed the staff results from both questions above in more detail we made the
following observations:
Management was considerably more critical of services than was front line staff.
Forty-five percent of staff thought that vocational services were meeting the needs
of consumers only a little, or not at all.
Residential staff were less critical of their own service than were vocational staff.
Vocational staff were less critical of their own service than were residential staff.
The trend of lower satisfaction with vocational services was reconfirmed in other questions. Staff and family members were more satisfied with both the quality and range
of residential options over vocational options. In fact, staff were roughly twice as satisfied with residential options than they were with vocational options. Staff rated the relationship between residential staff and consumers as being higher than the vocational staff
and consumer relationship. Consumers, on the other hand, made little distinction with
their satisfaction between residential and vocational services (see Chart #13) and consistently saw their relationship with staff as being what they liked about both residential and
vocational services (see Chart #14).
Both staff and family members were equally satisfied with the quality and range of staff
support given to consumers. Satisfaction levels for staff support were consistently in the
70 and 80 per cent range. As well, 81% of all staff were mostly or completely satisfied
with the support given by management to front-line staff.
Satisfaction with the direction given by the Board of Directors was not as clear. Fiftynine percent of staff were mostly or completely satisfied with the Board’s direction. Very
few (only 30%) family members answered this question. Of those who did, 82% were
satisfied with the direction given by the Board.
When asked what they liked most about KWHS, staff emphasized the benefits of the organization to the lives of consumers. The most common answers were that staff liked
their contribution to the growth and development of consumers and the flexibility of
KWHS programs according to consumer’s needs. “Working with my co-workers” was
also a popular response. Staff disliked their inadequate pay and their lack of involvement
in policy decision making.
Family members liked most how KWHS services contributed to the growth and development of consumers. Family members also appreciated the quality of support provided
by staff. Throughout the survey family members made comments of gratitude about the
fact that their loved ones were receiving support and the appreciation they had for the
“good work” of the staff. Their dislikes centred around the lack of availability of both
residential and vocational services.
Rather than asking people on the waiting list what they liked and disliked about KWHS
we asked the following question: “Why is KWHS for adults attractive to you and
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your family member?” A number of answers were written down.
The majority of people spoke about how important it was for their family members to be
active and participating. KWHS was seen as an opportunity to keep consumers “busy”
and become more “independent”. Some were concerned that the skills learned in school
would be lost if support was not provided to individuals in their adult years.
KWHS’s good reputation also helped to make it attractive to people waiting list. Some
people had had positive experiences with KWHS before and wanted to repeat those experiences. Others talked about KWHS having “excellent front line people who care”, of being “well established” and having a “track record” in providing supports to people with
developmental disabilities.
The amount of work that is required to support people with developmental disabilities
made KWHS an attractive option to lessen to this load. People wrote about the “relief”
that KWHS could provide to them. This needed support was particularly relevant for aging parents.
“It is attractive in the fact that our daughter would be looked after when
we cannot do it anymore.”
Finally, people on the waiting list also wrote about needing KWHS because it is seen as
“the only option”. One person talked about KWHS being the “only game in town”. Other
people had this to say:
“We would hope that our son would be able to be involved in the adult
programming…If this is not able to be done we have no idea what else we
would do.”
“[KWHS] is the only hope for my brother to obtain employment, understanding and acceptance. He’s definitely a better person when he’s working and he misses having a job.”
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4. Critical Issues/Challenges
Staff, family members and people on the waiting list were asked about critical issues, or
challenges facing KWHS services for adults. The majority of respondents (67%) thought
that the critical issues were increasing. Staff and family members had very similar opinions about critical issues, people on the waiting list had somewhat different ideas.
a) Staff and Family Members
Government funding cutbacks was the area that staff (50%) and family members (52%)
were most concerned about. In the words of one staff member, the funding cutbacks
“have made the process of developing and serving individual needs much more difficult”.
More specifically, staff were most concerned about the low staff to consumer ratio within
the organization. Vocational staff/consumer ratios were particularly high (1:15 in some
settings). Other areas of concern related to funding cutbacks was the level of stress
among staff, the resulting low staff morale and the availability of programs for consumers. Interestingly, although many staff (55%) were dissatisfied with their rate of pay, most
did not see this as being one of the greatest impacts of government cutbacks.
Family members’ concerns around government funding cutbacks were similar to those of
staff’s. Concerns about the availability of programs for individuals and low
staff/consumer ratios were the most common. Family members, unlike staff, were concerned about the impact of funding cutbacks on planning future directions for the organization.
Staff and family members also stated their concern about promoting meaningful lives
for consumers. One quarter of staff and nearly the same percent of family members
(23%) saw this as the area of most concern. Family members in particular saw the importance of adult services to create a range of work options for consumers “so that individuals can make meaningful choices”. This was seen to be a more pressing issue than
creating a range of living options or involving individuals to make choices for themselves.
The aging population of consumers was the third greatest concern for both staff and
family members. More specifically, responding to the complex needs of older consumers
was a primary concern. Staff training to enable a response to these complex needs and
more residential options for seniors were mentioned by both staff and family members.
One-half of staff saw communication among stakeholder groups as an issue to be addressed by the organization. Only 13% of family members held the same opinion. Among
staff, it was particularly management who had a lot to say about the need for improved
communication. Most of the staff communication issues identified were within staff.
Front line staff spoke of wanting more respect and involvement in decision-making. As
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44
one staff person said.
“There has always been a sense of secrecy where small to major decisions
are kept secret. Open up! We as front line [staff] deserve to know what is
really going on. Why are the secrets kept? We are not children. We are
front line [staff]. Why is everything kept secret?”
Communication issues were also identified among management. Some spoke strongly
about “inequities” and “inconsistencies” among different departments causing “frustration” and “confusion”. Others identified poor information sharing and consultation between upper and middle management.
Communication between vocational and residential staff was seen to be an issue for many
staff. One staff person went so far as to say that the communication between the two services was “poor at best” while others talked about the “frustration” and “confusion” that
resulted. A few spoke of the negative impact this had on the lives of consumers.
“I feel this is when communication breaks down, as staff [we] are so separate and only deal with one aspect of the person’s life.”
“We don’t work together to see the big picture, we all do our own jobs.
Broad team picture including all persons involved in consumers’ lives
would be great.”
A few staff wrote about communication issues related to family members. Difficulties
arise when family members “choose to isolate themselves from their child/sibling/relative
which is difficult when they are the guardian and hard on the individual”. Other points of
tension result from a clash of values between staff and family members in terms of balancing the consumers’ “right to privacy and the parents’ concerns”. Finally, staff thought
the separation of vocational and residential services confuses parents because different
staff provide different types of support.
Communication issues for family members centred around the lack of consultation opportunities and information given to families. Family members specifically called for
more information about the implication of funding cutbacks on services. The expectations
of how families could be involved in KWHS also needs to be clarified. The words of the
following family members sum up the need for information and consultation.
“Families should always be consulted, informed of all issues facing the
agency.”
“[Families] must be kept informed at all times with no beating around the
bush.”
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b) People on the Waiting List
People on the waiting list, like staff and family members, generally saw the challenges
facing KWHS adult services as increasing. The emphasis placed on specific concerns
held by people on the waiting list were, however, somewhat different than staff and family members. The majority of people (55%) saw promoting meaningful lives for consumers as being the most significant challenge facing adult services. Government funding
cutbacks was a primary concern for 40%. These two areas dominated the responses of
people on the waiting list.
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5. Directions for the Future
We asked staff, family members, people on the waiting list and consumers about their
suggestions for the future of adult services. All stakeholder groups had a lot to say about
future directions. Many people took considerable time and effort to write and talk about
their suggestions. Some expressed relief that they were able to air their comments in this
way and hoped that some change would result.
We divided the suggestions into three categories: 1) suggestions about the function of
KWHS, 2) suggestions about roles within the organization, and 3) suggestions about the
supports provided.
a) Suggestions about the Function of KWHS
Chart #21 summarizes the suggestions that the different stakeholder groups had for
KWHS services for adults. Respondents were asked to identify the three main functions
of services for adults.
Chart #21
Suggested Main Functions of Services for Adults
Group
Staff
Family Members
People on the Waiting
List
#1 Response
Promote integration/
community development
Expand life skills of consumers
Support consumers living at home
#2 Response
Create personalized residential programs
Create range of vocational
opportunities
Provide a range of vocational opportunities
#3 Response
Create range of vocational opportunities
Create personalized residential programs
Provide relief for parents/expand life skills
From the chart above we can see that the suggestions from staff and family members are
somewhat similar. Both groups emphasized the importance of creating residential and
vocational opportunities for consumers. They differed in that staff emphasized community integration compared with the family members’ priority of expanding the life skills of
consumers.
Promoting integration and community development was seen to be a primary function for
adult services by 70% of staff. It was rated highest by both vocational and residential
staff, as well as by front line staff and management, although it was highest among all
vocational staff (86%) and all front line staff (80%).
Some staff clarified what they meant about being more “community-oriented”. They
talked about consumers living in the community “in a home of their choice”, “as independently as possible” and feeling “free at home in the community”. They talked about
the need to “move individuals into community jobs with support” even if this meant clos__________________________________________________________________________________
47
ing the Training Centre. One staff person wrote that community integration included advocating for the rights of consumers “particularly when they are being violated, as well as
empowering individuals to do this for themselves”.
Some family members (26%) also talked about the need for KWHS to prioritize the
community integration of consumers. Calls for more “community involvement”, “less
segregation” and more jobs “in the community” were mentioned by family members.
“Real integration” should be achieved not in groups, but at an individual level.
The primary focus of most family members (49%), however, was the importance of expanding the life skills of consumers. Skills that could be taught included “basic life
skills”, “safety skills”, “household skills”, “computer training” and “independence preparation”.
Creating personalized residential programs and a range of vocational opportunities for
consumers was considered to be very important by both staff and family members. Residential and vocational staff each saw their own area as being more important than the
other’s area. Family members wrote of expanding the vocational opportunities, whether
in a sheltered setting or in the community. Having more residential placements through
group homes and supported independent living was also important.
Whatever the specific residential or vocational setting would look like, for many staff
(and to a lesser extent family members) the important thing was that the vocational or
residential opportunity being created was directed by the wishes of the consumer. We
will expand on this point later in the section dealing with suggestions for services provided.
Approximately one third of staff and one-half of family members felt that KWHS adult
services should be used as the first or main support and service option within the community. Other respondents, however, stressed the importance of being directed by consumers “first and foremost”. Sometimes this would mean partnering with other supports
and services if this better fulfilled the goals of consumers.
“[KWHS should be used] in conjunction with other supports and services
that will fulfill the individuals’ chosen goals.”
“[KWHS should be used] as a support service option, which first and
foremost meets the needs of adults and their families and does so in the
individual’s best interest—whether it be main support or partnership with
other supports.”
People on the waiting list had a very different view of the function of adult services than
either staff or family members. Their responses tended to focus on their (sometimes desperate) need for services for the adults they knew, who otherwise had little or no services
or support.
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Over one-half of respondents (51%) thought that adult services should focus on supporting individuals living at home. This includes consumers who live with their families or
on their own.
Providing a range of vocational opportunities was suggested as a primary function by
47% of people on the waiting list, while 40% suggested that adult services should focus
on both providing relief for parents, and expanding the life skills of individuals.
Fifty-five percent of people on the waiting list thought that KWHS should be used as the
first or main service option in the community. One person reiterated his/her comment that
KWHS is “the only game in town”. Another person, however, thought that KWHS should
work “in partnership with other community services”.
b) Suggestions about Stakeholder Roles
We asked what suggestions people had for the roles of various groups within the organization. The majority of comments focused on the roles of consumers, staff, and family
members. Suggestions for all groups are described below.
i) Consumers
Overwhelmingly, staff thought that consumers should have “more say” particularly in
terms of the direction in their own lives, but also in terms of the organization’s direction.
Staff spoke about consumers needing to have “more power and control over their lives”,
having “more say in where they live and who they live with”, and “a more active role in
all the decisions/choices affecting their lives”. Again, the theme of person-centred planning was emphasized with 70% of staff calling for individuals to have more influence in
decisions. Staff made the following comments.
“[Consumers should] be completely in charge of making all decisions in
their and regarding their life.”
“Even more personalized programs, more integration into community.”
The suggested increase in decision making for consumers also related to the future direction of the organization. A number of staff mentioned that consumers should be “far more
involved in the vision making/future planning of the agency”. Another staff person had
this to say:
“[Consumers should have] more input into agency decisions whether this
be done by a self-advocate committee or representation at a committee
level.”
Some family members (16%) echoed staff in their belief that consumers should be more
involved in decision making. These family members indicated that they would like to see
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49
consumers “involved as much as possible in the decision making process”.
“[Consumers] should be at the centre of planning. Should have more opportunities to make choices, their opinions should be sought and respected
even if this requires patience and creativity.”
Other family members, however, were less inclined to increase the decision making power of consumers. Family members spoke of needing to “guide” consumers “more carefully to help them make the best choice”, or of encouraging consumers to be grateful for
their homes and work places, reminding “them of the blessing of their monthly pensions”.
One consumer clearly articulated how he/she would like to influence service delivery
“[I would like to] be the added attraction at the staff meeting. Express the
way we can change, improve the program. I’d like [my residence] better if
I could move out.”
We will talk about person centred planning in more detail later on in the report.
ii) Staff
Many of the suggestions that staff had for themselves focused on the staff communication issues that were identified in the critical issues section of this report. Staff talked
about needing more “open communication” particularly between front line staff and
management and between upper and middle management. Font line staff and middle
management talked about needing to feel “respected”, “encouraged” and “supported” by
their supervisors. Front line staff called for more direct and meaningful “input in the direction of the agency” as well as a “greater role in decision making regarding the individual”.
“In too many cases management try to do whatever they want without listening. They say they’re listening, but really don’t.”
Both management and front line staff suggested that a greater emphasis needs to be
placed on “team building” which values and respects the contribution of all staff. In short,
both management and staff advocated for a less “top-down” approach in decision making
and to “soften the hierarchical staff structure”.
It was also suggested that front line staff should take on a stronger advocacy role on behalf of consumers. This would require the organization to clarify in a “clear and consistent” way the advocacy roles that are appropriate to assume.
“[Front line staff] should be allowed to be stronger advocates for individual served by the agency particularly when their rights are being violated
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within the community.”
“Ensure that front line staff have a clear consistent understanding of their
role as it related to advocacy; that they, along with individuals and families can advocate for individuals’ rights and that decisions are respected
even if it conflicts with others.”
“[Front line staff should] help individuals find out what’s important to
them, create a life plan and support them in fulfilling this.”
A number of staff suggested that more staff training is required especially in order to understand how to better support individuals. Staff training could also enable staff to learn
how to make better decisions.
Family members generally talked very positively about staff, particularly about front
line staff. A certain level of trust for front line staff was observed through comments
which praised and congratulated staff for their dedication and hard work. In fact, approximately one-quarter (24%) of all family members felt that front line staff could have more
influence in decision making.
Regarding specific roles, it was suggested that all staff should communicate more openly
with families. Family members talked about the need for staff to “be more open, to meet
on a regular basis with family members” and be “less judgmental to families”. As we will
see below, this was a point with which staff were open to accept.
iii) Family Members
A clear message came from staff regarding the role of family members within adult services: more involvement. Nearly all the staff suggestions focused on this issue. Forty-one
percent of staff thought that family members should increase their level of decision making within the organization.
According to staff, increased family member involvement could take place on a number
of levels. Primarily, family members should be more actively involved in supporting
adults receiving services from KWHS. This could involve participating “in the process of
completing a life plan for the individuals”, being “a valued member of [the consumers’]
support system”, or taking a more “active role in decisions regarding their family member”. Furthermore, family members should support their “son, daughter in taking more
risks” and should support individuals once decisions have been made.
According to staff, family members should also be more involved in the organizational
life of KWHS. While some family members are very involved, many staff felt the involvement required to support the organization should be more fairly distributed. Specifically, family members could take on a more visible role in advocacy and become involved in the various committees of the organization.
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51
“[Family members should be] advocates—partners in care and provision
of resources to staff and individuals.”
Finally, family members should also be more fully informed about KWHS according to
staff. Family members should be educated about the “policies and structures of KWHS”
in order that the sense of “partnership” between families and the agency could be realized. In this regard, KWHS also has a responsibility to listen to the concerns of family
members.
For their part, family members agreed that they need to be more involved and aware of
what goes on at KWHS. Family members thought that they, of all groups, should increase
their level of influence in decision making the most. Family members echoed many of the
points that staff made regarding increased involvement in the life of the individual as well
as the organization. Yet, family members called on the organization to help them with
this task. They suggested that KWHS provide them with more information about the organization and to communicate more clearly how they could help support their family
members.
iv) People on the Waiting List
Both front line staff and family members had relatively little to say about the role of people on the waiting list. Only management spoke at any length about the waiting list, but
even these comments tended to view people on the waiting list as being on the “outside”
of the organization. By and large, any improvement of the situation for people on the
waiting list was seen to be their responsibility and not the responsibility of KWHS.
According to staff and family members, the primary role for people on the waiting list
was advocacy. Waiting list people should “pull together more” and “lobby the government for required services”. They should become more active within KWHS committees.
There was strong suggestion here that if people on the waiting list would only unite and
actively lobby, they would be able to reap the benefits of services that are enjoyed by
family members already involved with KWHS.
A very few family members and staff did recognize that KWHS should assume some responsibility for dealing with the fact that not all people within our community receive
supports. Their suggestions are written in the next section dealing with suggestions about
supports provided.
Finally, people on the waiting list, themselves, thought that they should have more influence in the decision making at KWHS. In fact, one third of all respondents thought
that their level of influence should increase and only 13% thought that their level should
stay the same.
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v) Board of Directors
Staff suggested that the Board of Directors should improve their communication with
staff and with family members. Staff felt that many times they really did not know the
nature of decisions made by the Board. They felt that decisions should be “filtered down
to the people they affect” in a more open way. A number of staff also suggested that
Board members should become more “visible” to staff and individuals.
Another common suggestion by staff was that the Board of Directors should be more visionary. Staff called on the Board to undergo “long-term planning”, to “look at growth
and expansion” and create more support “options” in order to meet the needs of consumers. Program changes should be evaluated and feedback from others requested. Finally,
staff suggested that a part of the Board’s visionary process should be to develop partnerships with other organizations.
Family members had little to say about the role of the Board. Those who did offer suggestions spoke about the Board needing to be more informed about the organization, become more active in advocacy, and adopt a more visionary, innovative approach.
vi) Adult Services Committee
Very few staff or family members gave suggestions about the role of the Adult Services
Committee. Many of the suggestions that were made were general or vague. Clearly, the
lack of clarity about the purpose this committee prevented people from suggesting changes in their role.
Most of the suggestions that were made focused around the need for the committee to act
as a resource to consumers. This could be accomplished by being a “liaison” between the
stakeholder groups within KWHS and other community groups on behalf of the individual. A number of people suggested that this committee needs to receive direction from
consumers themselves, in part achieved through consumer representation on the committee.
One staff person suggested that the Adult Services Committee should broaden its mandate to support individuals who are not receiving support from KWHS at this time.
c) Suggestions about Supports Provided
Many respondents gave suggestions about how supports could be provided by KWHS.
We divided their suggestions into five categories: 1) developing a clear and unified vision
for supports, 2) emphasizing person-centred planning for consumers, 3) adopting holistic
supports, 4) what consumers said they want, and 5) expanding supports to assist people
on the waiting list.
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i) Developing a clear and unified vision for supports
Staff, and to a lesser extent family members, talked about the need for KWHS to develop
a clearer organizational vision and long term strategy. Important decisions need to be
made about how and what type of supports are to be offered to meet the diverse and individual needs of consumers in this community.
“Should share more of a common vision and philosophy with respect to
where the agency is going and the individual rights of those we provide
service for. Should all be aware of social/political issues and how they can
affect staff and individuals.”
“More visionary work—where do we see services heading, how do we get
there—planning put in place to do so.”
Developing a clear vision is particularly important in light of the fiscal constraints that
the organization is experiencing and the changing policy context presently being proposed by the main funder, the Ministry of Community and Social Services (MCSS). Referring to the need for careful planning among services, the words of MCSS are also applicable to KWHS itself.
“Without careful planning, we end up with a patchwork of programs that
makes it harder for people to find the services they need.” (Making Services Work for People, 1997)
The need for such visionary planning is evident in the varied and sometimes contradictory responses among and within stakeholder groups throughout this report. For example,
two very different opinions exist about the basic issue of how to provide services. Recall
the discussion about whether KWHS should be “doing for” or “working with” consumers on page 23 of this report. Some people felt that the organization should be “caretakers” of consumers, while others thought the KWHS should be “facilitators” for the independence of consumers. People within the organization did not have a unified philosophy as to how services should be delivered.
The example above underscores how the lack of a unified vision pulls and stretches the
organization in different directions. In this case, the issue was less on developing a clear
vision than clearly communicating the vision that is already present. (The existing mandate of KWHS does mention that the “primary responsibility” of reaching the goals of
individuals “rests with individuals and their families”. It no longer speaks about “controlling and protecting” consumers. (See page 6 of this report). In the words of one staff
member, what is needed is increased “unification through greater communication”.
Development and communication of this clear vision was seen to be the responsibility of
the Board of Directors and management. Key components of this vision could include the
suggestions listed below.
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ii) Emphasizing person-centred planning
The need for supports which are based on a person-centred planning process was called
for by all stakeholder groups, including consumers. Instead of services and programs, the
individual becomes the focus of planning processes in person centred planning. Rather
than developing a range of service and program options and placing individuals in the
option which best suits their needs, person-centred planning first determines what type of
supports an individual needs and then creates flexible supports in response.
The words of various respondents explain person-centred planning more clearly.
“Support person by helping them create a life plan and give them the support to fulfill it.”
“[Consumer] involvement in every step of planning—develop programmes based on individual needs rather than slotting person into an existing programme.”
“Even more personalized programs, more integration into community.”
“[Consumers] should be at the centre of planning. Should have more opportunities to make choices, their opinions should be sought and respected
even if this requires patience and creativity.”
“[KWHS] should operate the same way as [another organization]. Each
person is supported in the home of their choice and supported in whatever
they choose to do with their life. Each individual decides on what they
want to do every day.”
“Continually responds to the wants and needs of people receiving service
…have the time to look at and develop a new way of providing service.”
By using person-centered planning principles KWHS would be able to provide supports
flexible enough to adapt to the changing needs and choices of consumers. For example,
respondents talked about the need for KWHS to better support older consumers both in
the present and to a much greater degree in the future.
“We will have to start planning [supports for seniors] as we have quite a
few reaching that stage not too far down the road.”
The person-centred planning approach is becoming more common. The principles of person centred planning has been implemented in a variety of ways, some very creative. For
example, in British Columbia one organization exists simply to support “microboards”. A
microboard is a group of family and friends, of an individual with developmental disabilities, who have legal responsibility to make decisions about allocating funds they receive
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from the government. The cornerstone of microboards is that the direction comes from
the person for whom the board is created. A recent evaluation review of microboards
(Women’s Research Centre, 1994) found that they provide individuals with more choices, more opportunities and greater independence than traditional services.
In Kitchener, Opening New Doors, focuses on developing innovative ways to help people
come home from institutions. The strategies promoted by Opening New Doors include
person centred planning and involving self-advocates in major roles. A key focus is finding the best way to help individuals to plan and to make choices.
In Thunder Bay, Choices, was a two year individualized funding demonstration project.
Individuals, through their own planning processes are identifying their own needs for
support and then purchasing supports from local agencies. The Centre for the Developmentally Challenged is one of the agencies involved with individuals. As a result of
Choices the agency will, for example, change from having eighteen budget centres to
having over one hundred budget centres – one for each individual to whom they provide
supports. The agency will be accountable to the individuals for the support provided. Individuals are involved in the process of hiring their own staff.
iii) Adopting holistic supports
It was suggested by respondents that individuals need supports which help them as a
“whole person”. For some family members the split in residential and vocational services
was confusing. Staff saw the division as fragmenting the lives of individuals.
The solution suggested was to provide supports that meet the needs of the whole person.
For some respondents this meant improving communication and relationships between
the residential and vocational services. Others were more radical in suggesting that the
idea of having two distinct and separate services should be re-considered.
“To promote a more holistic programme for individuals where support
workers are involved in all aspects of their lives and not only within one
area, i.e., residential counselor or vocational instructor. Rather that the
support worker overlaps within both aspects of the person’s life, creating a
better awareness of how to support the individual with their dreams and
desires.”
“Residential and vocational services need to communicate better, philosophize together, work in partnership to meet the needs of the ‘whole person’.”
“Increase communication between departments-cooperation and realization all are on same ‘team’.”
“Help bridge gap between vocational and residential staff.”
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“To have support workers that provide supports within both vocational
and residential programs and not separate as is today.”
vi) What consumers said they wanted
We asked consumers involved in the different vocational programs where else they
would like to work or spend their day. The results can be seen in Chart #22 . Notice that
35% of consumers at the Training Centre and 37% of consumers in the Community
Placement Program said that they would prefer to work or volunteer somewhere else in
the community. Participating in leisure activities was the next most common response for
both groups. Only two individuals at the Training Centre said anything that indicated that
they wanted to learn more life skills.
Listen to some of the preferences stated by people working in the Training Centre.
Regarding working or volunteering in the community
“I am trying to prove that I can get a better job in the community.”
“Don’t know what kind [of work in the community]. It’s nice out there in
the fresh air. Never have worked in the community.”
“I’d like to work in a restaurant in the kitchen…I have to wait a long time
for a job. A lot of big waiting lists.”
“I like to get out and work someplace [e.g., restaurant]…but not now, I’m
too busy.”
“[I’d like to] volunteer. It’s hard to find a job. I want a job but it is too
hard.”
“I need a new job. Sometimes I would like to work at a factory.”
“I was on C.P.P. before, maybe again sometime in the future…Make more
money at C.P.P.”
“Here [at the Training Centre] for time being. If something comes up I
will try it.”
“I’d like to move on. What happens if this [Training Centre] shuts down?
What are we going to do? They say if we don’t have any work then we
have to go back to school. And I don’t want to go back to school. [People
should] raise more money for us.”
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“I wish I didn’t work here. Wish I was back at [previous job]. I used to
work there.”
“[I] would like to work on computers.”
Regarding leisure or social activities
“On a nice day we could go for a walk for exercises.”
“Like going for a walk.”
“Would like to do something else. Play ball after work.”
“Sometimes I like to stay home to exercise at YMCA.”
“[I’d like to go] swimming in a pool, hockey.”
“Coffees, lunches, suppers, bowling, concert, circus, dance, church every Sunday.”
“Like to visit a lot of people. Like to watch T.V.”
“Sometimes would like to go out for a drink, they say ‘you don’t have enough
money’.”
“I like to go to the library.”
Listen to some of the preferences stated by people involved in the Community Placement
Program.
Regarding working or volunteering in the community
“[I’d like to work at] Tim Horton’s—cleaning job.”
“Being a nursing assistant in a hospital. But I wasn’t smart enough. It was
a big blow to me.”
“[I would like to work at a] daycare or babysitting…I was trying to look in
the newspapers. But it’s kind of tough looking for a job. Some jobs need
fees and references.”
“[I would like to] find another job…I had my hours cut [in the present
job].”
“I didn’t want to go back to workshop. Too noisy.”
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Regarding leisure or social activities
“[I would like to] go out and have coffee/ride on buses.”
“[I would like to go] golfing, going to parties…socializing.”
“[I would like to] spend time in [my] room.”
“[I would like to watch] T.V., exercise.”
Consumers at Adult Developmental Services and their significant others also gave suggestions as to where they would like to work or spend their day. The most common response was participating in social or leisure activities followed by participating in activities in the community and volunteering in the community. Specific responses from
A.D.S. included more “variety in activities” such as volunteering and leisure activities,
being in a “quieter setting with fewer individuals”, doing more “outdoor activities”, and
“spending more time with people without developmental delays”. One significant other
thought that the consumers would like to “do a small job in the community that would
reward him with a few dollars.”
Chart #22
Where Else Consumers Would like to Work or Spend their Day
We also specifically asked consumers what they would like to change about where they
lived or worked. While many said that they were happy with their present situation, many
others gave a variety of suggestions for change.
Some consumers talked about making changes in where they lived. Consumers spoke
about wanting to “change roommates”, have a “bigger room”, “live with my own family”
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59
or “move out and live on my own.” A number talked about wanting to live with their fiancée or girl/boyfriend in the present or in the future. One significant other said that a
consumer would prefer to have more “duties” both inside and outside the residence, another talked about having a “smaller group home”. Finally, one consumer stated that
he/she would like to have more choices about his/her living conditions.
“I wish we had the freedom to make more choice, but we don’t.”
Consumers at the Training Centre had a number of suggestions for change: re-arrange
or renovate the Training Centre, work in different areas within the Training Centre, have
fewer people working there, have longer breaks and open the Centre earlier so that people
don’t have to stand outside in the cold. Other consumers talked about wanting to receive
more money for their work, having more leisure activities or not having to work at the
Training Centre every day. The most common suggestions for change, however, dealt
with the noise and fighting that occurred in the Training Centre.
“Make the noise less. It gets me mad. Be further in the back where it is
more peaceful and quiet.”
“I want to work in a quieter environment. I wouldn’t be as distracted as
much. That’s it.”
Consumers within the Community Placement Program had very few suggestions about
improving their places of work. The suggestions that were given centred on wanting or
not wanting to do specific tasks at work.
Most suggestions for changes at Adult Development Services emphasized the need for a
less crowded and more relaxed setting.
“Due to overcrowding at work this individual endures a high/anxious setting daily. Reduced numbers in his day program would thus be of benefit.”
Other significant others talked about needing more “one-to-one attention”, more “variety
of activities”, and having “less staff turn-over”. One consumer said that sometimes he/she
would “rather be at home.”
v) Expanding supports to assist people on the waiting list
As mentioned above, most staff and family members did not see a role for KWHS in
supporting people on the waiting list. The responsibility for change rested with the people
on the waiting list themselves.
Yet there were voices among staff and families that acknowledged that KWHS, because
of its position in the community, does have a key role to play. The voice of people on the
waiting list, was so strong on this point that we devoted this section to their specific is__________________________________________________________________________________
60
sues.
According to certain staff and family members, the need for KWHS to inform people of
their status on the waiting list was seen as a minimum step. Communicating the concerns
of people on the waiting list to the government was another role that KWHS could play.
Finally, KWHS could also provide assistance to find alternative supports in the community.
“[KWHS should] ensure that these families are fully informed of their status on the waiting list; provide support to access services; and increase
communication between families and government.”
One family member did wonder why there even was such a thing as a waiting list in our
community. This person saw the issue of a waiting list as a community-wide concern to
be addressed by all tax payers through the government.
“Why there should be a waiting list for services such as these? Governments should accept responsibility for care as [they do] for sick [people
and] for seniors.”
People on the waiting list were very clear about what they would like to see from
KWHS. They suggested a number of changes that are outlined below.
Overwhelmingly, people on the waiting list said that they wanted to see more services
and have better access to those services. Respondents talked about the need for new
group homes and other forms of supportive living arrangements. They spoke about expanding the community placement program and other vocational options. There was a
strong emphasis that KWHS needed to be more responsive to the needs of individual
consumers. For some people this meant being more creative with existing resources.
“I would like to see more of a personal planning approach where clients
determine their own aspirations and career goals.”
“Using your resources to offer options to existing programs and support in
finding alternative arrangements.”
Better access to services was repeatedly mentioned. People talked about the waiting list
being “too long” and needing “quicker access”. Others suggested that there should not
even be a waiting list.
A few people on the waiting list suggested that KWHS should be more supportive of
families who have chosen to support individuals at home.
“Don’t punish families who have kept their child at home and are now
worried about his/her future.”
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61
“There always seems to be…money going to programs for those who are
family independent. This is pretty discouraging for the parent who has
raised their child at home and wants to give them this home setting but as
time goes on they become less and less for them. The only time something
is done is when the parents get that they can’t handle it any more or one
gets sick and it becomes a crisis situation. By the time this all happens it is
a little late for everyone concerned.”
People on the waiting list also made a number of detailed suggestions about how KWHS
could support them while they were still on the waiting list.
People on the waiting list suggested that KWHS improve its communication with family members in general, and families on the waiting list in particular. More information
should be given to families about types of service options available and status of people
on the waiting list. KWHS should be more “pro-active” and take responsibility for making sure that this information is made available.
“More information regarding range of services…best kept secret! Didn’t
and don’t know what is available. Individual is currently in housing which
is not most appropriate for his needs—is here by default…no other options
known about by family at the time.”
“Those clients who are/have been involved need regular communication
with up to date information on their options. Unless the parents or the client are strong advocates, the agency seems to assume complacency.”
“We have had one phone contact in the last two/three years since our son
finished [with one KWHS program]….In the meantime our son has become more isolated and spends most of his days in front of the T.V. or his
computer. We would like to know what other services are available.”
“I really don’t know much about KW Hab.”
“I’m confused about KW Habilitation—If it is where my husband and I
visited…to get help for [individual]—I have phoned numerous times and
received no reply.”
“At the moment we received no information and never have…I used the
phone [to get information about services]. What do families do who don’t
call around for information?”
“Keep me informed about my status on the waiting list.”
People on the waiting list said that they would appreciate KWHS organizing social and
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62
recreational events. Such events would provide opportunities for individuals to develop
skills and give much needed relief to parents.
“Recreational and social opportunities are needed especially for individuals who required one-on-one. They need opportunities to attend activities
like everyone else. There is not a lot of recreational/social activities for individuals who require 1:1.”
“Few activities [are] available at present to individuals. By providing more
social and recreational programs this would give relief to parents coping
with young adults at home. [It] becomes very costly to bring care providers in to work with adult.”
“Provide a buddy system compatible and responsible to go into community on a regular basis. Provide a variety of organized social functions which
individuals could attend and pay their own way.”
People on the waiting list spoke about occasionally needing to have “a break” from supporting their family member in the form of respite care. The sense of urgency, and frustration expressed by many people on the waiting list is captured in the following words.
“We are getting older and need some form of respite to make all life
healthier.”
“Respite care when I had [health problems] I could not get anyone to take
care of my son. This was an emergency. Also, when my husband passed
away suddenly, if it was not for the chaplain at the hospital I don’t know
how this would have been looked after.”
“When parents need a break there should be help available before a crisis.”
“Due to lack of consistent services my health has been jeopardized. I’ve
been on the waiting list for respite nearly 2.5 years with no hopeful sign—
tired of calling for status update.”
“I will probably need more respite care if no programs are available for [individual]. Since I don’t know what I am going to do with her hanging around the house
all day long.”
“I am looking for a place for my son, and there is nothing out there, only
waiting list. I can’t wait for waiting list, I need it now.”
“If possible how soon her name would come to the top of the list. Also if
her name came to the top and wasn’t ready to do whatever it would be, she
would remain on top and be asked the next time some opening came up
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63
and not be dropped to the bottom.”
Many people on the waiting list took the opportunity to write about the difficult time that
they were having supporting their family member. This was particularly true of parents
who were getting older and finding it difficult to continue the level of support they had
provided in the past.
“Our main concern now is future living accommodation once the family
member is no longer able to look after the client.”
“The stress of supervision is quite significant. One parent has reduced
their work day to 4 hours to be at home to monitor our son. Last week his
other parent sustained a back injury when trying to keep our son from falling during a seizure and missed a week of work.”
“If an individual is living at home and has no program to attend this puts a
lot of stress on family. Parent relief is needed or else the whole family is
effected and breakdown occurs.”
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6. Themes and Recommendations
Information gathered for this report reflected that consumers, staff, and family members
emphasized the benefits of KWHS to the lives of consumers and the contribution of
KWHS to the growth and development of consumers. According to waiting list respondents, KWHS has a good reputation and proven track record.
Information gathered for this report also reflected some directions for future change
which are consistent with the current literature from the field and Ontario government
policy directions. The findings indicated that it is time for changing the way that KWHS
is supporting adults.
The following recommendations are based on the evaluation review findings. The recommendations are organized into five categories: visioning, supporting, roles, structure,
and stakeholder learning. In addition, we present two recommendations related more directly to implementation. These two recommendations, are based on researcher interpretation more than on information gathered during the evaluation review.
a) Organizational Visioning
Findings from the evaluation review indicated that stakeholders are articulating important
areas related to the desired direction of KWHS
Personal empowerment
 Consumers8 indicated more satisfaction and fewer concerns with services and
programs in which they have more control (e.g., Community Placement Program). Staff and some family members strongly supported the trend to more
self determination by consumers.9
Community inclusiveness
 All stakeholder groups promoted increased community integration for consumers as a direction for the future. This was a very strong finding.
Promotion of meaningful lives
 Staff, family members, and people on the waiting list indicated the importance
of consumers having meaningful lives. When consumers described their preferences and the things they did not like about where they live and work, it was
clear that they both valued their relationships and wanted to be respected as
individuals.
8
9
This analysis was drawn from responses to open-ended questions.
See page 49 for data
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65
Recommendation # 1:
That an organizational visioning process be initiated that will focus the
KWHS and its stakeholder groups on important values and principles
and the strategies that are required to move in the desired direction. The
responsibility for initiating this process lies with the Board of Directors
and senior management. The evaluation review report provides an information base for the visioning exercise.
Principles that will help the visioning exercise:
 The process needs to include all stakeholder groups involved with the
evaluation review.
 Consumer involvement needs to be supported at all stages of the process.
 Communication needs to be open and ongoing with all stakeholders.
b) Planning for Supporting Adults
i) The information in the review provided strong support, from all stakeholder groups,
for person centred planning. Stakeholders pointed out that supporting adults needs to
be based on their capacities, strengths and include their social networks. Considering
the whole person, rather than segmenting their needs, is an important component of
person centred planning.
Recommendation # 2:
That supporting adults take place through person centred planning and
development of social networks. All stakeholders need to develop their
understanding of person centred planning approaches and the role of
social networks. For some individuals, social networks need to be developed.
c) Stakeholder Roles
i) When consumers described their preferences and the things they did not like about
where they live and work, it was clear that they both valued their relationships and
wanted to be respected as individuals. Overall stakeholders supported more selfdetermination by consumers. This theme was strongly supported by staff; some family members also supported this theme.10 Consumers indicated more satisfaction and
10
See page 49 for data
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66
fewer concerns with services and programs in which they have more control (e.g.,
Community Placement Program).
Recommendation # 3:
That consumers be supported in roles that are self determining and that
the community involvement of some consumers be increased.
ii) Both staff and families supported increased involvement of families in the lives of
consumers and in KWHS. The nature and extent of the increased involvement of families needs to be determined by the consumers. From the Centre’s work on deinstitutionalization in British Columbia, we understand that families can be reunited and become very involved in the lives of family members who have been cared for by others
for many years. Families need not be alone in this endeavour. Through approaches
such as support clusters and microboards, a mixture of professionals, family members, and friends come together to support individuals in understanding and making
their own choices.
Recommendation # 4:
That the involvement of families both in the lives of their family members and in KWHS be increased.
iii) The findings of the evaluation review indicated high satisfaction with the quality
and range of staff support. The staff support role is important to person centred
planning processes. The role of staff and management is key to the implementation of
recommendations related to the evaluation review. Suggested staff roles centred on
the need to facilitate consumer growth (e.g., “resource person to consumers” and
“counselor”)11.
Recommendation # 5:
That staff, continue to provide the current quality of support to consumers . That staff focus on the person centre planning process and the development of social networks for consumers. That staff focus on building community capacity for the involvement of consumers.
iv) People on the waiting list indicated that they should have more influence within
KWHS. This is supported by the recent MCSS policy directions. This finding was
supported by a few staff and family members. We also know that about half of the
11
See page 27 for data related to roles
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67
people on the waiting list are already involved in some type of KWHS program.
Recommendation # 6
That people and families waiting for service be included as stakeholders
in KWHS.
v) Information from the evaluation review told us that for all stakeholder groups the role
of the board of directors was least clearly understood. Staff indicated the highest
level of satisfaction with direction from the board; other stakeholder groups had much
lower levels of satisfaction. Staff and family members indicated the need for improved communication with the board and that the board needs to be more visionary.
Recommendation # 7:
That the board becomes more visible, more visionary, and provide more
leadership in relation to supporting adults. In particular, the roles of
families and people on the waiting list need to be understood and included in the organization.
d) Structure for Supporting Adults
i) The information gathered during all stages of the evaluation review indicated a lack
of clarity and confusion in relation to understanding the Adult Services Committee.
This committee should assume more responsibility and should provide leadership in
developing and recommending policies for supporting adults.
Recommendation # 8:
That the Adult Services committee be stakeholder based and over time
include consumers, waiting list families and front line staff.
Recommendation # 9:
That the purpose of the Adult Services Committee be, over time, to develop policies and a new organizational structure for supporting adults.
The policies and structure need to facilitate person centred planning approaches and social network development.
ii) Consumers indicated more satisfaction and fewer concerns with services and programs in which they have more control (e.g., Community Placement Program). Staff
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68
and some family members strongly supported the trend to more self determination by
consumers.
Recommendation # 10:
That all staff provide support to adults based on the information that
emerges from person centred planning processes for adults. In addition,
staff need to continue to follow the administrative policies of the organization.
e) Stakeholder Learning
i) The evaluation review findings reflected the turbulent times that exist in the 90s in
Ontario. Human services are undergoing extensive changes in short periods of time in
order to respond to the fiscal demands of government. New ways of supporting are
being demonstrated in ongoing ways and revealing positive outcomes. Stakeholder
groups require the opportunity to think about and to discuss these changes. Learning
opportunities will provide stakeholders with the strategies and skills needed to implement the recommendations of this report.
Recommendation # 11:
That learning opportunities be available for all stakeholder groups. Areas for learning could include understanding the roles of different stakeholder groups and person centred planning approaches.
Additional Recommendations
As mentioned in the introduction two recommendations were developed on the basis of
researcher interpretation rather than on information gathered during the evaluation review. However, we felt that these recommendations would help with thinking about how
things might unfold in the future. The first recommendation tries to set forth a potential
organizational structure for staff. The second recommendation exceeds the mandate of
the evaluation review because it discusses the external influence of community.
i) In the information gathered from staff there was reference to the concept of “staff
teams”. Teams could provide the opportunity for staff to communicate and problem
solve while team leaders could provide links to other teams and to the administrative
functions of the organization.
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Additional Recommendation # 1
That, over time, the organizational structure for supporting adults be redesigned.
 That adult services no longer be divided into vocational and residential services.
 That the role of staff be to provide resources to person centred planning processes.
 That each staff person provide support to a number of adults who
have varying degrees of capability.
ii) Promoting meaningful lives within the community was supported by all stakeholder
groups.
Additional Recommendation # 2:
That KWHS be an integral component in how the Kitchener-Waterloo
community responds to and includes all adults. There are a variety of
ways in which this recommendation could be manifested.
 At the individual level consumers may require resources and supports from the community in order to realize their self-identified
needs.
 KWHS should continue to work in collaboration with other community agencies and groups (e.g., serving on interagency committees) in
order to realize the self-identified needs of consumers.
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APPENDIX
(Copies of all surveys and the protocol
for the Participant Observation are
available at the KWHS offices)
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71

K-W Habilitation Services for Adults Evaluation Review

Transcription

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