Community Living’s radical idea: Listen to the members
Closing the Caland Manor Group Home on Spruce Rd. last September marked part of a change in how Community Living-Atikokan (CLA) supports people with developmental disabilities.
The home’s five residents have relocated to accommodations of their choice: one is in AGH long-term care, two moved to Supported Independent Living apartments, and two are renting in the same family home.
Their support needs differ, from 24-hour support to a few hours per day. The main thing is their new living arrangements means “they all now make their own daily decisions like the rest of us,” said CLA executive-director Jim Turner.
Two of the clients actually got to remain in the original building, which is now a private family residence; CLA is now renting the facility, which is now a family home. As part of the living arrangement, the homeowner (who receives a per diem) agrees to have someone in the home with the members at all times. The CLA provides staff for additional support, and respite for the family through the Supported Independent Living program (SIL).
The SIL continues to provide support staff (24 hours per day) to tenants of the West St. apartment building, as well as to members living throughout the community who need support to live independently.
“None of this was spur-of-the-moment or taken lightly. We have travelled across the province talking to [developmental services organizations] who had closed their group homes; most importantly, we talked to our own members,” said Turner of the three-year planning process undertaken by the board and staff.
“The service culture has shifted in the last three years from control and care to independence and support. The focus is now on being ‘person-centered’, with each individual choosing how they live their lives.”
The housing changes have been largely driven by members’ wishes, said Turner. The catalyst for the Caland Manor closure came from “one of our members who was not happy at the group home,” said Turner. “He told us he wasn’t happy with the [waking times], meal times, the lack of meal choice, the neighbours [fellow residents]… he wasn’t happy that he didn’t have the choice that all the rest of us take for granted on a daily basis.”
Another wanted to move out of SIL housing and rent an apartment in the community.
The organization has tried to take its direction from observing and listening to members, a cultural shift embraced by the province and experts in the developmental services sector. “We now know, looking back, that they want the same things as you and I: Connections, acceptance, family, purpose, belonging,” said CLA’s adult services manager Tina McEvoy.
“Our population is changing. The people we support today are not typically coming from institutions. Now, most are coming from families and they have varying experiences, a different set of skills, and a built-in knowledge that they have rights and choices in life. We support that person’s choice,” said McEvoy. “We focus now on the member’s needs, wants and desires. We take our lead from what they tell us, and we provide opportunities that may lead to failure, with the understanding that this is part of growing. There is dignity in risk and although we’ve always focused on inclusion, [in the past] we did so by always remaining in control.”
Now, rather than staff overseeing a group of members, each worker is paired with a member to provide one-on-one support.
“Building relationships is key to everything we do now,” said McEvoy, who tries to match employees to members based on age and other demographics which may help the two build a natural rapport. “It’s all natural relationship-building taking place.”
In fact, CLA staff members are pretty flexible in helping members live life to the fullest, and have supported members to live their lives in ways that may challenge common perceptions of what is ‘acceptable’ for someone with a developmental disability. Turner notes how an employee helped a member realize a lifelong wish to shoot a rifle. With all safety precautions in place, the member thoroughly enjoyed a target practice with a worker. Another employee accompanied a member to the Legion so the person could enjoy a beer and socialize.
While workers will only accompany or support behaviour that is appropriate, safe and legal, again, the public sometimes does not fully recognize that the adult individual has the same freedom of choice in all aspects of life as anyone else. Those choices are not something the CLA has the legal right – or desire – to control.
“All of our members are adults, and we have to be mindful of each individual’s right of choice,” added Turner.
That being said, “We emphasize that with rights come responsibilities,” said McEvoy. “We also make sure they have the information before making any decision.”
For members, having freedom to choose accommodation and leisure activities, with staff taking a less authoritarian role, has dramatically improved behavioural issues, said McEvoy.
“Unwittingly, some of our practices can contribute to behavioural problems, because the person is trying [unsuccessfully] to communicate their [frustration or unhappiness].”
The organization’s changes have been “a challenge to communicate to families,” said Turner. “Families want to know their family member is safe. And [as part of the recent changes to housing and support] we have put any necessary security and safeguards in place [to support members].”
One relative of a group home resident initially expressed trepidation about the change, recalled Turner. “A few months later, he came and thanked me; he said I’ve never seen [his family member] as relaxed and content as he is now.”
While the idea of closing group homes was unheard of three years ago when CLA began considering it, now about one-third of organizations like CLA are either transitioning or considering group home closure.
Turner sums up CLA’s role: “We support people to be present and engaged in the community, in accordance with their goals and wishes, and to live as independently as possible in housing that meets their needs and preferences.”