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The Honourable Sandra Pupatello,
Minister of Community and Social Services
6th Floor, Hepburn Block
80 Grosvenor Street
Toronto, ON, M7A 1E9 November 21, 2004
Dear Mrs. Pupatello
RE: PROPOSED CLOSING OF HURONIA REGIONAL CENTRE
I am the sister of Wendy Sayer, a resident of Huronia for the past 52 years. I am also a Registered Psychologist
with a Ph.D. in Counselling Psychology from the University of Toronto and I practise as an Industrial -
Organizational Psychologist in Canada and the U.S. I believe it is a huge mistake to move forward on an initiative
that was created in 1987 and has not had a public review in all this time. In fact, I have just received the
preliminary discussion paper on “Transforming Service in Ontario for People who have a Developmental
Disability” and it seems extremely inappropriate to announce the closure of the last three Community Centres
before this discussion is even underway.
This letter is to outline what I believe are the key issues and very serious potential dangers to my sister, the rest
of the Huronia residents and the community if you persist with this plan. Then I believe you owe it to the relatives
of the Huronia residents and the community to present to us:
1. The basis on which the original decision was made
2. The current reasons for moving up the deadline for this closure
3. The result of quantitative and qualitative outcome studies of those people moved out of Centres into the
Community due to the closure of facilities and the push since 2000 to depopulate these Centres.
4. The business case for these closures
5. Your plans and written guarantees/ contracts on the continuance of the same level and quality of care
6. The moral/ humanitarian case on which you are pushing this forward.
I facilitated a meeting of 165 very angry people October 30th at Huronia, most of whom will be writing to you, to
their local MPP’s, engaging the media in many ways and generally doing what is necessary to open this “decision”
for public and realistic scrutiny. It appears that the government managers speaking to that group were under
some sort of gag order not to discuss the reasons for any of these decisions but only to speak about ‘after the
decision’. This could not be done as the vast majority of us are not going to engage in any planning to move our
relatives out of Huronia or to agree to this move at this time. It is up to your Ministry and government to present
alternate options that are more in line with the current and long terms needs of this population.
Wendy Sayer – 57 years old
Wendy was five years old, and I was three, when she was placed in care at Huronia. It broke my mother’s heart and
I remember well all the crying at that time and for the next year. But my parents believed, at that time and till they
died a few years ago, it was best for Wendy to be where she could be in a safe environment, and where she was
supported with the best on-site educational, medical and social care. I visited every two weeks until I was a teen-
ager and my parents continued until they could no longer drive themselves there. The point is that we saw, and
continue to see, the care and growth of Wendy in this environment and it was then, and is now, so much more
than any individual house in some housing tract could provide. This move that you are proposing may be the
death of her, as it has been to others forced to move out, and you will see through the following issues why this
is the case.
This issues are introduced briefly in this letter with additional information and comment provided in an Appendix
to this letter.
ISSUE 1 – INSTITUTIONS, CENTRES, COMMUNITY HOMES
What is your definition of an Institution? Of a group or community home?
What facilities and level of physical, psychological and emotional care is the government obligated to provide to
developmentally disabled adults who were placed in care many years ago with the understanding that this level of
care and geographical setting was a commitment for life?
HURONIA IS A HOME IN EVERY DEFINITION OF THE WORD. There is an incredible misperception by your
employees, by the Association of Community Living members and some members of the public that Huronia is an
“Institution”. And to persist in your discussion paper of continuing to use this term (e.g., are closing the last three
“institutions” ) demonstrates the lack of knowledge and old-fashioned ideas still housed in your Ministry. This
calls up all sorts of silly visions of mental asylums, locked and cold ward rooms something in the nature of “One
Flew Over the Cookoo’s Nest”. Yes, when Wendy went into Huronia in 1952, it was an institution and her bed was
in a large ward room. Now, she lives in a real home with a large kitchen, living and dining area and a well-
equipped bedroom that was the envy of my children when they visited as teens. The fact that the living/ family
groups are housed in a “building” does not make it an institution. It is truly a “centre of excellence” the likes of
which you cannot reproduce, no matter how much money you throw at group homes.
One of the government papers that expounded on the ‘goodness’ of pushing for community living said that it was
to take them “out of large institutions and put them into closer and smaller communities”. Huronia IS a small, close
community within a medium sized community in Orillia. Part of this push is to move them into community homes
close to relatives – I live in downtown Toronto and my other sister lives in Brampton – it would totally overwhelm
Wendy and be contrary to what appears to be the underlying intent of these moves. Quality of care would be only
a fraction of what she has now….yes, she is luckier than many disabled adults…but the government has an
obligation to this generation of disabled to continue this level support that she has grown up with.
Please see the appendix for a comparison of the attributes of HRC versus group homes and stop referring to HRC
and other homes of our relatives as “institutions” unless you can do so in a positive way. Many people live quite
happily in buildings instead of separate houses and if these homes are called apartments, condominiums, lofts,
university residences, etc., it seems to be quite acceptable. HRC is a similar situation with the bonuses of medical
and physical supports.
ISSUE 2 - QUALITY OF CARE
I recently attended Wendy’s annual review, as I do every year. Once again my other sister and I were impressed by
the professionalism, the continuity and the number of caregivers surrounding Wendy. There were seven people
around that table that interacted with Wendy on a regular basis (the list of these people is in the Appendix). Many
have known her for many years and are extremely well trained and, thus, can tell when there are subtle changes
in her psychological and physical health.
We believe that this move to close the three Centres will severely lower the quality of care as it is being done in
order to:
a) Save money by cutting services
– You can hire much lower level staff for less money and reduce the range of services available (the evidence is
incontrovertible by looking at current staffing in group homes, their training and pay ranges compared to the staff
at HRC),
- Get out of the infrastructure business by moving to individual per-person costing on a regular basis as well as
one-time grants for physical accommodation projects. This is short-sighted and will result in other Ministries
having to make up the difference through placement and services through the Ministry of Health and Long-term
Care and probably, Ministry of Corrections.
b) For Huronia, to take over the land – to finish taking over the rest of the fabulous Huronia lands for other
purposes (we understand a Satellite University is in the works and many other government offices are now on-
site) because some people believe this valuable land is wasted on housing and support for the developmentally
disabled. However, we will continue to use it as the standard of quality for physical setting, housing and care
against which any options are evaluated by us or the courts.
What studies have you done to compare the quality of care offered by Regional Centres versus group homes?
What outcome measures have been evaluated on a quantitative and qualitative basis for those moved out of HRC
in recent years?
ISSUE 3 – HEALTH OF AGING, HANDICAPPED POPULATIONS
One of the biggest issues for Wendy and many of her peers at Huronia is how to manage their healthcare as they
age. Down’s Syndrome people, like Wendy, tend to develop Alzheimer’s quite early as well as other medical
problems associated with their physical and mental disabilities. It takes special understanding and experience to
work with people like this. Huronia only hires and retains professional staff that know how to do this, and, more
importantly, want to work with these people. You don’t have to look too far to see how many people working with
the disabled in group homes don’t really want to be there but they can get the jobs without much in the way of
qualifications. And even those with Social Work degrees are paid lower than in other settings – this was pointed
out by the sister of one of the HRC residents as she works in one of these settings.
Where do you propose Wendy and her friends are to go once they develop these problems and regular age-
related physical decline if they are in group homes to begin with? I have gone through the stage of looking for
seniors’ residences and then nursing homes for both my parents. The staff are not equipped to deal with the
elderly severely developmentally disabled and you can believe that the residents and families of the residents in
these homes won’t allow this to happen.
Huronia is already equipped with the staff, infrastructure and other resources to provide continuous care as this
population ages. If it is closed, then more money will have to be spent by your Ministry, or through the Ministry of
Health and Long Term Care to re-invent this setting.
ISSUE 4 – COPING WITH CHANGE BY THE
DEVELOPMENTALLY HANDICAPPED
I am a specialist in Stress and Change Management, and have consulted and provided training on these topics to
many public and private organizations since the early 1980’s. I also provide therapy to individuals who are on
short or long term disability because of the physical and emotional impact of specific stress, trauma and anxiety in
their lives. Some people handle change or stress easier than others so we know that with major organizational
changes, this has to be managed so that the change required by shifting priorities is introduced and proceeds
with consideration for the concerns and anxieties of many people. Certainly, the staff at Huronia would go through
this normal adjustment to change.
The impact of change and stress on the developmentally handicapped is a whole different concept than it is with
normal adults. It is not simply a continuum of the same reactions or a need to go slower so they can adapt – the
processing of change and impact is very different. Routine is important to this population not only because it
takes them much longer to learn how to do things, but it gives them comfort and control in a world that is much
too complex for them to interact with on a normal basis. Of course, there is a continuum of ability to cope with
change within this population as it is with the normal population but let me give you some examples of what
happens with small and larger changes.
For the last two years – up until about six months ago, the staff thought that Wendy may be in the early stages of
Alzheimer’s and were concerned that she was becoming incontinent. You have to understand that many of these
caregivers have known Wendy for more than 15 to 20 years so they can see changes in behaviour, and through
their excellent record keeping, they can communicate with other staff to check out their perceptions. Now Wendy
is fine – all tests for dementia are negative and she is no longer wetting. We all put the pieces together and
figured out that this started soon after Wendy was moved from a stone house on one side of the Huronia grounds
into McGhee resident on the other side of the property. It took her a year and a half to recover from this small
change. Can you imagine how long it would take to adjust to a larger move? It’s unconscionable to even consider
it.
I have it on good authority that several of the residents who were forced to move out of Huronia in the last few
years suffered physical and medical decline and actually died. Due to the privacy laws we cannot access their
names through Huronia but we are planning other legal and effective ways to have the relatives of these people
contact us so that we can publicize the reality of this push to community living rather than the almost religious
fervour and blindness that is perpetuated through many people in the Association of Community Living and social
workers on your staff – all of whom believe they are doing good things but don’t have to live personally with the
results.
What outcome studies have you conducted to track the health and welfare of residents who have been forced out
of residential homes after living there most of their lives?
What studies have you conducted to understand why many of the disabled have not been able to be
accommodated or adapt to group home living and had to return to, or enter for the first time, residential living?
ISSUE 5 – RHETORIC/ PHILOSOPHY OF “FULLY INTEGRATED INTO THE COMMUNITY”
In the Appendix I have provided several examples of the rhetoric used by the government and other associations
in Press Releases regarding the care of the developmentally disabled. Without exception, they are based in a
belief system that is closed to any options of care for the disabled other than “fully integrated into the community”
and by this they mean living in group homes. This ignores and shows very little understanding, or care, for the
severely physically disabled and those with very limited intellectual capacity.
We know that there is a continuum of disabilities and there needs to be a continuum of services that match the
continuum of disabilities. It was heartbreaking to hear the stories of parents who had believed this rhetoric and
moved their children into “the community” and then saw their children suffer and many longed to go ‘home’ to the
Regional Centres. Respect for these people must include listening to what they want for comfort and security and
not to those people (e.g., Association for Community Living) that project what they believe they would want if they
were in the same position. This is a pretty basic psychological defence mechanism for the emotions these people
feel for those with disabilities. But it has gotten out of hand and beyond the simple lack of insight by a few to
having a major impact on government staff policies.
What are you doing to listen to multiple definitions of providing “respect”, “dignity” and “security” to the
developmentally disabled?
On what basis do you think the residents of HRC are not “fully integrated into the community”?
ISSUE 6 – LACK OF INPUT FROM RELATIVES
I received a letter dated February 16, 2004, from Myra Wiener, Director of the Developmental Services Branch in
response to a letter I had sent to Dalton McGuinty expressing my happiness with Huronia and concerns about its
future. After acknowledging what a wonderful facility it is, she writes:
“The ministry will work with families and communities to plan for the future of these individuals to ensure that
their needs continue to be met in a safe and practical way.”
And then in September of 2004, the closure of Huronia is announced.
Ø I was not asked for input.
Ø Huronia Helpers, the relatives’ group was not asked for input.
Ø My friends and relatives in Orillia were never asked for input.
And now I have just received this Preliminary Discussion paper from the President of Huronia Helpers who is as
aghast as I am that we are to reply to it by the end of November. It looks like this review of services is being
rushed through behind closed doors.
In closing, you should know that a large group of relatives and people in the community plan to fight the closure.It
is not good for the community. It is not good for Wendy. And I will not risk her health to assuage the guilt feelings
of misinformed and misguided people who are projecting their sense of how they think they would feel if they
were in Wendy’s situation. It doesn’t take a Psychologist to understand that this is about how they are thinking and
feeling, and not about how Wendy thinks and feels about her current living setting.
I expect answers to the questions posed in this letter, in writing, and request that I meet with you to discuss this
situation more fully.
Yours very sincerely,
Lynda (Lyz) Sayer, Ph.D., C.Psych. Copies:
- Dalton McGuinty
Registered Psychologist with: - George Smitherman
- The Ontario College of Psychologists
- The Canadian Health Service Providers in Psychology
- The Association of State and Provincial Boards of Psychology
APPENDIX ON KEY ISSUES
ISSUE 1 – INSTITUTIONS, CENTRES AND COMMUNITY / GROUP HOMES
Compare just the physical attributes of Huronia and Community Living Group Homes.
Huronia
- Large living areas including full sized kitchens, living rooms and eating areas in an open plan that allows
easy movement of people with physical handicaps- - Much larger square footage per resident
- Recently improved bath infrastructure to accommodate those with wheelchairs and the residents as they
become elderly and need more physical supports in bathing and personal care - Freedom for Wendy to move safely on the grounds to attend workshop, go to the canteen and other places
for her many activities - A swimming pool in her building where she can get to it safely all year around and warmly in the winter
Community Living Group Homes
- Regular sized houses, or smaller (due to costs of real estate) with rooms separated by walls and stairs that
need a lot of work done to safely accommodate the physically handicapped - Normal sized bathrooms which cannot be renovated for “wheel-in” baths and other accommodations and so
these people will need to be moved to ….hospitals, homes for the elderly and other “institutions” - Locked in a house where going out requires someone to accompany her as she has not language, poor
hearing and sight - Most in-door community swimming pools are housed in schools and they are being closed to community
access and sometimes even to the students
ISSUE 2 – QUALITY OF CARE
Let me list for you the people my sister has providing care to her on a regular basis:
- Primary counsellors – one on duty at all times
- Residential Counsellor (RC) 4 – the Supervisor of a group of individual home settings
- Residential Counsellor 3 – assistant to the RC 4 who is there when he isn’t to manage the operations and
caregivers
- Skills Development counsellor – she has known Wendy for many years and runs the workshop where Wendy
goes “to work” every afternoon and sits next to her ‘boyfriend’ as she has done for many, many, years
- Audiology specialist – teaches the care of using a hearing aid. Wendy has been taking these classes once a
week for many years and still needs help putting it in and working it. This specialist liaises with an Audiologist to
set up and supervise hearing tests which is a major event. This year it took three visits and the support of the
resident nurse to complete the testing. The majority of residents at Huronia are hearing impaired.
- Primary nurse – The severity of physical disabilities for most Huronia residents make it very important to
have medical care onsite. Economies of scale allow this at Huronia but it would never be an option in a group
home.
- Recreation counsellor – HURONIA RESIDENTS ARE INTEGRATED INTO THE COMMUNITY ON A REGULAR BASIS
- weekly visits to church
- bowling and other regular physical activities in the community
- visits to local fairs and special events throughout Muskoka
ISSUE 5 – RHETORIC/ PHILOSOPHY OF “FULLY INTEGRATED INTO THE COMMUNITY”
I have listed some of the statements and phrases that have been published through the government and others
that communicate value judgements that are expected to be embraced by the whole populations. These show
clearly there is a systemic bias against providing care in the three remaining Regional Centres and any decisions
about them are not conducted with a full and objectives analysis of the details and logic for caring for the
developmentally handicapped.
1. MCSS Connections – Sept. 9th, 2004
”…Sandra Pupatello announced the government’s intention to transform Ontario’s developmental services
system …into one that will help more adults with a developmental disability live more independent and fulfilling
lives in the community.”
” [closing the three centres] and the adults will be moved into community settings”
”110 million in capital and operating funding…to enhance existing services and create new supports to help
facility residents successfully move from institutional to community living”
The residents of Huronia already have fulfilling lives in a much better “community” setting than we see available
in the other “communities”. You don’t seem to understand that the residents of Huronia CANNOT live independent
lives as they are the most disabled in the continuum of disabilities. Do not waste my taxpayer money re-inventing
the wheel!
2. Letter from Dalton McGuinty – February 6th, 2004
”My colleagues and I will take your views on Huronia Regional Centre into consideration as we move forward with
real, positive change”.
Listen to the relatives and staff –this is not positive change..and our views were never solicited, and when we
give them we are ignored.
3. Letter from Michael Cillis, Administrator of Huronia Regional Centre, July 23rd, 1996 (announcing the
closure of some facilities and the push to put more residents out into group homes).
”I want to assure you that staff of this Ministry will work together with community service providers to ensure the
placement process is carefully managed and will meet the needs of residents and their families.”
This started a wholesale “body sale” in which owners and staff of community living sites visited Huronia to look
over the residents and choose which ones they’d like to take…to be another source of government revenue for
their businesses. My sister’s regular medical, eye and ear check-ups lapsed for two years as once there was a
“match” of resident and buyer, the resident had to have a medical work-up and so they bumped out the other
residents.
“Previous downsizing initiatives in Ontario have been very successful and well received.
At our October 30th meeting of relatives we heard of many residents who had to and very much wanted to return
to Huronia after trying out these community settings. We will be collecting stories from these people as well as
from those seriously affected by these down-sizing/ cost-cutting measures in this and other Provinces and
publishing them on our website.
4. Press Release – Ministry of Community and Social Services, July 23rd, 1996
“Moving people back into their communities will bring many of them closer to their families and friends. It will
provide them with the opportunity of having a better quality of life.” Said Mr. Tsubouchi.
”Over the next four years, funding will be redirected from institutions to local community agencies…”
I’d say that the people from the Association of Community living that have had the direct ear of the government
over the last 10 years are in conflict of interest providing advice as they stand to directly benefit, financially from
these changes – which are made to the detriment of all the residents in the Centres.
“I can’t tell you how important we feel this initiative is,” said Ontario Association for Community Living President,
Nancy Stone. “We all have been working so long and so hard to see the day when people who are housed in
institutions are welcomed back into the community with dignity.”
My sister could not tell you the definition of dignity..if she could talk. She wants comfort, routine, her home of 52
years and long term friends. And the community at large has not changed …many people still stare, make fun of,
or are uncomfortable with people with severe mental and physical handicaps. This woman obviously doesn’t have
any family members at Huronia and is an example of the “Pollyanna’s” that believe that they can ignore the hard
realities of these disabilities and everything will be wonderful..and then they go home and don’t have to deal with
the consequences.