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Citizen editor
When Shirley Turnbull was six her parents, Bill and Marie of Brussels, made a difficult decision.
Born with Down’s Syndrome Shirley suffered from multiple disabilities and in 1958, the Turnbulls placed her in
Huronia Regional Centre in Orillia, a move they felt would better serve her many special needs.
Now, her parents are gone, Huronia is expected to close by the year 2008 and surviving family members are
frantic for her future.
In 1985, the government decided that it was in the best interest of the mentally disabled to be integrated into
community. Huronia, along with Rideau Regional Centre in Smiths Fall and Southwestern Regional Centre in
Chatham are the last three of their kind in the province.
While the current Minister of Community and Social Services Sandra Pupatello has met with concerned family
members and assured them that previous integrations have been successful, Shirley’s sister Barb Fritz, of
Brussels is not persuaded. “Things have changed since 1985. They need to go back and reassess this.”
Psychologist Lyz Sayer, whose sister resides at Huronia, said the biggest difference now is that those who have
gone into community living in previous years have been higher functioning and much younger. “They can adapt
more easily.”
However, she cautions there are many stories, even so, of those who didn’t. “There is a man in Huntsville who sits
on the side of the road all summer and has nothing to do. When asked, he wants to go home to HRC where he had
a social life, activities.”
“Bobby Windover was a resident of HRC until 1992 and was then sent out to a group home. The first one was okay
because he went with friends. But then they were moved around. The care diminished, he developed diabetes.
There was a reduction in supervision and lower quality meals. He wandered the streets of Orillia summer and
winter, was put into palliative care in the hospital, quickly deteriorated and died in a nursing home.”
“And the stories just keep mounting.”
For Shirley, said Fritz, to be moved from the home she has known for close to 50 years will assuredly be traumatic
and could be tragic. Shirley is unable to talk, though she has learned some sign language at Huronia. She suffers
from spinal problems that hinder mobility. Respiratory problems often lead to pneumonia. Ear problems require
special water plugs which must be worn even for showering. She is on medication for epileptic seizures and
suffers from congenital heart disease.
While Fritz is uncertain at this point how much her sister comprehends regarding the fact she may lose her home,
she is certain it will be terrifying for her. When distressed, she says, Shirley will scratch herself. “The last time I
visited her, her hands and arms were raw. They said it was because she had missed a hair appointment. I can’t
imagine if a small change in schedule upset her this much, what is going to happen if they move her.”
Sayer agrees that the change could be terribly traumatic. “The stress experienced by the developmentally
disabled even with small changes in their lives is many, many times greater than that experienced by the most
cautious of the able-bodied adult. As these people don’t understand why the changes happen, they get
disoriented, anxious and eventually quite ill.”
“Also,” she notes, “many of these residents have lived together for many years so it is like wrenching them out of
their families. We wouldn’t do this to anyone in our society, so why can they do it to the most fragile of the
population?”
Shirley, said Fritz, has created her family at Huronia. “Sometimes when she’d be home for a visit, Dad would find
her up in the middle of the night, crying and packing her bag. She wanted to go home.”
Fritz also notes that her sister has every level of care imaginable available to her at the centre. There is an on-site
pharmacy and dentist. There are kinesiology, audiology and speech pathology departments. Residents have
access to assistive devices and wheelchair repair. There is an in-door pool and with its location on Lake Simcoe,
Huronia offers an opportunity for outdoor activities.
More importantly, Fritz believes Huronia offers constant medical and physical supervision her sister needs which
community living may not.
She’s not alone. Pauleen Kerkhof of Brussels worked in a regional centre for 12 years. While she agrees that
community living is indeed the best alternative for higher functioning developmentally disabled, for those with
higher needs such as the people now living at Huronia, she has doubts. “When it comes to personal safety, some
lower functioning people can’t even bathe on their own. An epileptic for example, needs supervision and whether
that would happen in community living, I don’t know.”
She recalled a developmentally disabled man who lived in Brussels and often walked around dressed quite
inappropriately for the weather conditions. “Was this a better arrangement for him? I don’t think so. Certainly
there are those who should live in the community. But it’s not in the best interests of all of them. “
Sayer says the only way for community living to work for those currently residing at the regional centres is for
them to be moved together to a large residence with 24-hour care, medical supervision and a staff that can
provide for their greater physical, social and recreational needs. “But then there will be the ongoing fight to get
funding. This whole area is in crisis in Ontario right now, which is why we want this kept within government.”
Fritz said that the government has promised individual plans which the families will be part of. However, those
who organized to fight the closure, Huronia Helpers, feel that it may not be that simple. According to information
from the group, the idea of an excellent placement in five years is unrealistic as there are five to seven-year
waiting lists now.
In a meeting in February, Huronia Helpers challenged Pupatello on several issues. Told of the long waiting lists,
Pupatello said they were a result of people putting their relatives on the waiting list early.
Her claim that previous experiences have gone smoothly and been successful was contradicted by the group,
which told of deaths and questioned why no follow-up study had ever been done to determine success or failure
of the moves so far.
According to Sayer, the minister was not direct on the cost of the moves relative to keeping Huronia open.
Since that meeting the Huronia Helpers have been actively trying to reach all Huronia families. Fritz, who as a
retired RPN understands about quality of care and of life, has been speaking to many of them. “I haven’t run into
anybody who wants their loved one moved.”
She is also extemely grateful for the support she has received locally. “So many signed the petitions and I am still
being asked by people how things are going.”
Recalling a day when she recently returned Shirley home after a visit, Fritz smiles at the memory of her sister’s
obvious delight in being back. “As soon as we stopped the car, she went running in, and hugged everybody, her
caregivers, her friends. She was home. It was where she wanted to be. “
Home for Shirley is the only world she knows at Huronia. It is one that offers her a variety of recreation and leisure
activities, that provides amenities and services to enhance her life. It is the place where she has her friends.
Anywhere else, said Fritz, “even living here with me, would be a lonely existence for her. She is so used to doing
what she’s been doing and being with the people she knows.”
Interestingly, according to Sayer, the government has put “considerable money” into upgrading the regional
centres. “In the last eight years all the residences have been given serious facelifts so that they are now big,
bright and well-equipped to deal with the aging, disabled population.
For this reason, she, along with many others, feel that everyone would be better served if the facilities became
Centres of Excellence.
After all, should the homes be closed to the residents and integration into the community not work, then what,
wonders Fritz. “There’s no going back.”
With a letter campaign, petitions and a rally set for May 11, Huronia Helpers are determined to try and change the
government’s mind that moving every developmentally disabled person from an institution-based system to a
community-based system will not necessarily promote inclusion, independence and choice.
Change is never easy. For people like Shirley Turnbull it can be devastating. Looking at a picture of a beaming
Shirley, as Huronia’s Miss Christmas 2002, for Fritz there’s only one real issue. “Nobody has told me one thing
about this yet that will benefit Shirley.”