Wednesday 29 May 2013

Just Breathing vs A Good Life

Yesterday I tuned in to a podcast about a new model of care in Australia.  Initially I thought I might be able to double-task by writing some easy emails while listening.  But almost immediately, I abandoned that idea and grabbed paper and pen instead.  I needed to remember everything about this podcast and consider what it meant to me - both professionally and personally.

Social Innovation Generation (SiG) in Toronto, Canada sponsored this presentation by Sarah Schulman titled "Are We Doing Good?"  SiG described it this way:  For the past 5 years, Sarah Schulman has been ‘radically redesigning’ youth, family crisis, and aged care services. People in this line of work talk a lot about social problems (wicked versus tame). They talk a lot about methods (design thinking, systems thinking). And they even talk a lot about impact (effective, efficient). But, they don't talk nearly enough about what is good. Do you?

Listen to the podcast HERE

Sarah began by introducing Dudley and Daphne, a couple both in their 90's and still living in their home in Australia.  Dudley is a former race car driver and Daphne was his pit crew.  Now, with limited mobility and a range of health issues, Dudley and Daphne sit at home, either staring out the window or watching television.  Daphne reflects, "This isn't a life.  I'd rather be dead than live like this."  

Mary is Daphne and Dudley's care worker.  She delivers social and communication care to the couple for 90 minutes per week in addition to popping in six days a week to give them both a bath.  

Daphne and Dudley's adult children worry about their parents and were happy when they stopped driving.  They disapproved of their parents buying french fries on their outings, reasoning that high fat foods would contribute to heart disease.

All the parties contributing to Daphne and Dudley's care had a different idea of what was 'good' for the elderly couple.  The agency that employed Mary believed that good care was delivered if it 'did not go overtime and it kept the clients happy."  The government ministry that paid the agency to deliver care maintained that 'good' was achieved if Dudley and Daphne remained alive.  The couple's adult children believed that 'good' was upheld in their parents' lives if the grandparents did not die and did not cause worry by indulging in risk-taking behaviours.  Dudley and Daphne themselves were deeply unhappy and lacked purpose in getting out of bed every day.

Dr. Schulman's innovative program "InWithFor" seeks to develop a language to talk about what is good, for starters.  What does good look like for individual service users?  Questions like, "When do you feel most independent and in control?" lead to a deeper conversation about how help can become meaningful and helpful.  Dr. Schulman has set herself a daunting task - it is to seek the end of a flourishing life in those who need care.  In order to achieve her goal, new capacities must be developed in creative problem solving at all levels.  The values and ideals of service users must be actively sought and acted upon.  Schulman's model is certainly bottom up and not top down.

Dudley and Daphne are not the only examples of care receivers described in Schulman's podcast - there is a disenfranchised and employed youth and a recovering addict with ten children.  Redesigning services with a good life as an end goal for different sorts of care recipients is no simple feat.  But anyone interested in knowing how should begin by listening to this podcast today. 


Unknown said...

I believe that one of the fundamental problems is this whole concept of "care". In my opinion, as long as we continue to talk about caregivers and care, there is an assumption that we are simply maintaining someone and not supporting them in their lives. After 28 years of living with a "disability", the greatest obstacle I face usually has to do with someone who thinks that they need to care for me. The government wants to care for me, the medical profession wants to care for me, even family and friends want to care for me. I would much prefer if you CARE ABOUT ME, in the same way that you would for anyone else. In a strange sense I am saying that we need to take away the care, if we really care.
Roger B Jones
"The Ability Guy"

The Caregivers' Living Room said...

Oh Roger, you are right, if course. This is about support and Sarah Schulman's underlines your point - she also speaks about developing a new language of 'support' - I am the guilty party in using the old vernacular simply because I'm used to it. But you are right, there is power and meaning in language. Today, I read another friend's blog who referred to her son's 'carers' as 'associates' - I loved that! We must find a new language to reflect a new conversation and a new power relationship between the individual, the family, the 'associate', the government and the taxpayer.

Anonymous said...

Changing language is not enough. People with developmental disabilities (DD) have gotten into that -- activism around getting rid of the "R" word -- but it really doesn't change their lives. Too many people still see someone with Down syndrome, e.g., and think of them as "retarded". And, the DD field has used the term "support" and called frontline staff "direct support professionals" rather than caregivers for some time now, but does any of the new vocabulary really change how people think, feel, act and receive people who are (highly) stigmatized? Stigma applies to homebound elders as well.

The Caregivers' Living Room said...

Thank you for your comment - language is a starting point, but wholesale change will only come with a massive values shift in the giving and receiving of care across generations. The over-valuing of independence (instead of the more realistic and worthy goal of inter-dependence) has got our society into real trouble. I am hoping that we will come around to see the value in creating whole government approaches to supporting family and community care. By whole government approach, I mean taxation, caregiver friendly immigration policies, wheelchair accessibility, community programming with family caregivers in mind, etc. etc. Every person with a care requirement and every caregiver will have personal aspirations that are unique to their situation. That's why I champion the idea of 'most supportive/least restrictive' as an ethic for change moving forward. That's also why I believe that all people who are currently giving or receiving care need to come together as a political force for change. No more silos pitting one group against another (eg seniors vs disability)!