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The “lens of relationship,” staff and shared living caregivers we’ve met

April 29, 2011

Susan and I were talking after a presentation about how one small change leads to another, a kind of logical progression that leads down one path and almost necessarily puts the question to what else one has been doing, and suddenly everything ends up in a state of transformation.

We seem to quote John Lord almost constantly and in particular his idea of “a lens of relationship” which has been so important to our thinking.   Specifically, John says that everything we do can be done through a lens of relationship.   The first thing that gets called into question is what is a relationship, and then the question of authenticity comes up.   Having thought critically about the authenticity of relationships and talked to hundreds of staff, families and folks with disabilities we end up with a quite different idea.   While we previously tended to believe that people who got paid had a financial investment that made authentic caring “loving” relationships difficult if not impossible, we’ve seen many relationships in which someone with a disability and someone who was getting paid as a way to enable them to spend time with a person they’d come to care about had developed an authentic, lasting bond.   We also had to break down the idea of what a “staff” was – it’s often someone who has resisted promotion because they enjoy the presence of the person they support, and doesn’t make a lot of money or work what we’d think of as “prime” hours.   We’ve met people whose husbands have refused transfers because they know how important the relationship their spouse has with the people she supports is.   We met someone who was planning a retirement home with a room for the person she’d spent her career supporting, because “I can imagine not working, but I cannot imagine not being with them.”

The “lens of relationship” calls into question the idea of theory and practice.   We met someone who had worked with a person for almost thirty years, under five different Executive Directors.   Each E.D. came in with a new idea.   The first one said “These people will never have friends, so we must be their friends – it’s that simple.”   The second one said, “We are professionals; it’s okay to be friendly but we must keep our distance to ensure professionalism.”   The third one said, “Our job is not to be their friends, but to help them make friends in the community.”   The fourth one said, “Like nurses and doctors, we are here to address needs – that’s the job.   I’m not sure why people are talking about friendships when it’s data we need.”   The fifth one said, “Apparently the government now wants us to be friends, but this is happening with a 20% cut to services.”   Those were all imposed theories.   The practice continued on.   The staff and the person she cared about continued on course – they both worked, they socialized with others, they went to planned events, the staff did paperwork that changed with the times.    And, on holidays when the person had no family to go to, she would come to the staff’s home where the staff’s children called her aunty, and friends who visited believed they were sisters and neither of them saw any need to correct that impression, neighbours came and went and got to know the “sister,” and they’d exchange thoughtful gifts because of everyone in the world they’d come to think they knew each other best…

“But we can’t let on, of course, and we both know that.”   Part of seeing what we do through a “lens of relationship” needs to be thinking about things like the golden rule, how we want to be treated, how we treated others.   A recognition of our shared human-ness and then thinking about ethics and fairness.   How ethical is it to impose restrictions that require people to, essentially, “love” in secret?   What we are teaching is problematic, for the folks supported as well as the staff.

One of the places we’ve seen many deep and authentic relationships develop is in home-sharing  situations, so it’s been alarming to watch a general kind of denigration of what we know can be an amazing relational experience.    Dr. David Pitonyak talks about how much real work supporting shared-living is for agencies.   He talks about “richly supporting the caregivers” and given that there’s no amount of money that could compensate them, becoming an agency which is truly interested in giving caregivers what they’re going to need.   This is very different from the idea that it’s the least expensive option (although it pretty much always will be) and it places a whole different onus on us.   Again, it makes “the lens of relationship” the primary thing.

Often it seems that there hasn’t been a lot of deep thinking about the natural and facilitated safeguards which occur in shared living.    The reflexive reliance on the appearance of professionalism – the need for more rules, more policies, for licensing (!!!!), for monitoring.    I think about a week in which our foster-children’s social worker came to “monitor” our home: where were the fire extinguishers, was the med cabinet locked, was there an exit plan in case of emergency, could they see the room and look in the closet briefly, could they talk to the children alone.   Tick, tick, tick, it’s all good.   The next week my mom came to visit.  “Why are the kids not in swimming lessons?”  “I don’t care if you don’t like their birth-mother, you’re going to sit through that visit and like it – I get that there needs to be a supervisor but it doesn’t need to be some stranger.   I might go myself.” “How long has it been since these children have had homemade cinnamon buns – I don’t care how long it’s been since you’ve had homemade cinnamon buns, I’m asking about them – they’re too thin.”   “Just because the Doctor prescribed that pill doesn’t mean you can’t ask some good questions about side-effects – I don’t think there’s anything wrong with that boy that a good bike ride wouldn’t fix.”   The questions were endless.   As were the questions from the folks at the school: “When swimming we noticed she had no underwear on and knew you’d want to deal with that.”   And the people at Starbucks: “That new respite person didn’t know the communication program so I hope it was okay that we showed him.”   When one of kids got a new beau and brought him over to visit on a day when we happened to be out of the house, we got six calls.   One of them from a total stranger.   “Who is that boy?”

I think of group homes I worked in prior to coming to Spectrum in what might, admittedly, be called the wild west days of community living – where homes were chronically understaffed, and staff were barely trained, and the idea that the residents might have rights was unheard of.   The thing that was striking was the influence of collegiality – you didn’t want to get your colleagues into trouble.   It’s a thing that happens in all institutions, including schools.   It’s also the thing that almost every investigation of abuse points to as problematic.   And then I think of some of the shared living caregivers we have who are so knowledgeable and consider it their role to find resolution for those they care about – around health, around aspiration, around relationships, around quality of life – and how to meet these goals for people they bring in their neighbours, they work on relationships with Doctors and families and friends.   They figure it out.

A parent recently asked me about burnout among shared living caregivers.   Ernie, our Executive Director, has this theory of burnout – that it happens when someone sees the need for change but the system refuses to support the changes necessary.   While we often see this in systems, we rarely see it in caregivers, where the ability to make changes and see them through successfully is much more possible.    As foster-parents, it was never the kids who made us feel burned out (and I’ve talked to many foster-parents who say exactly this) but it was the needs and lack of accountability of the support system.

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