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Shared Living: It’s All about Relationships

November 1, 2011

“The match is everything.  When the right people show up in a person’s life, most of what he or she needs will happen.  Ninety percent of what works is finding the right people and making sure they stay a while.” (David Pitonyak)

You’ve no doubt seen the recent media coverage about Community Living British Columbia (CLBC).  One issue that’s getting a lot of attention is the question of moving people out of group homes into less costly shared living situations, and whether individuals and families are being included in the decision-making and provided with enough information to make informed choices about their living arrangements.  CLBC has acknowledged that there are problems in the system that need addressing, and while we don’t speak for CLBC or for any other service provider, we can say that we are very proud of Spectrum’s shared living services and our incredible team of caregivers.  We are concerned that shared living as a residential option not be tainted by a few bad examples, and so we’d like to share some of our insights based on the successes we’ve seen over the past decade here at Spectrum.

Spectrum has always believed that people should have a range of options to choose from, and be fully involved in any planning that affects them.   As people’s needs change, and as we’ve gained experience with new ways of supporting people, our services have evolved to become ever more personalized.  In our own lives, most of us will try out a variety of living situations and, according to statistics, we tend to move every 7-10 years throughout our lifespan.  It seems reasonable, then, to expect that people with disabilities will also want to make changes to their living arrangement, especially if they started out in a home that someone else chose for them (as is often the case).  Since 2001, about half of the people in Spectrum’s services have chosen to make changes to their living arrangement.  Many have chosen to move out of staffed homes into a more natural shared living arrangement with a caregiver, couple, family or housemate.  In fact, shared living has become our most popular service offering, and the residential option that people are requesting more than any other when they come to Spectrum.

It’s been a very deliberate and thoughtful process that has brought us down this path.  Done right, shared living provides safety, security, and opportunities for personal growth and development that meet or surpass anything we’ve seen in 25 years of providing residential services to over a hundred individuals and families.  But it has to be done right, and it all hinges on the relationship between the caregiver and the person being supported.

Our friend Lynn, who lives with Sean and Lisa on the Sunshine Coast, is an example of someone who has flourished in shared living.  Lynn came to Spectrum from Woodlands in 1989, moving into a staffed home in East Vancouver where she lived for the next 14 years.  In 2003, Lynn’s overnight support person, Lisa and her husband Sean decided to move to the Sunshine Coast and suggested that Lynn (who everyone agreed would benefit from living in a more rural setting) come with them, and they would become her shared living caregivers.  Over the course of several months, plans were put in place to make this happen, and Lynn eventually moved over to the Sunshine Coast – and she’s never looked back.  It was obvious to everyone from the day she arrived in her new home that she was indeed, home.  The personal attention, flexibility, fewer people coming and going, and most of all Sean and Lisa’s welcoming of Lynn into their lives as part of their family have had a transformative effect.  Lynn is happier and healthier than anyone could have predicted.  At 60, Lynn (who has Down syndrome and limited vision) climbed the Grouse Grind with Sean and Lisa.  She goes swimming at local beaches with her new friends, sits on the patio of her home taking in the panoramic views and sounds of nature, goes for long hikes in the woods – things she loves to do that we were challenged to do with her in the city.  And wherever she goes, she sees people who know her, who are glad to see her, and who would miss her if she wasn’t there.  She’s a valued member of her community.

Through Lynn’s example, and countless others, our shared living services have grown, mostly through word of mouth.  There are many reasons why so many people have chosen this model over traditional staffed residential support, but the most important seems to be the opportunity for building an authentic, reciprocal relationship with a caregiver or family who genuinely want to share their life with the person.  When we get this right, everything else starts to fall into place.  People with long histories of challenging behaviour suddenly start to settle down because they’re living with someone they’ve chosen to live with, who listens to and respects them, in a home that truly feels like home.  People’s health improves, under the watchful eye of a caregiver who knows the person intimately, sees them every day, and can attend to things that might get missed in a group home with a revolving door of staff coming through.

Some would argue that shared living needs more bureaucratic oversight, more regulations, more standardization – as if these are the things that will keep people safe.  The fact is, caring relationships keep people safer than any system ever could.  As a service provider, our focus should be on supporting people to build strong relationships and personal networks, keeping the bureaucracy away from them as much as possible, not adding more bureaucracy to their lives.  That’s not to say we don’t need standards or that we shouldn’t monitor the service – quite the contrary – but it means that our standards and monitoring need to honour and support the relationships that are at the core of the service.

“Many people with developmental disabilities are more vulnerable exactly because they lack opportunities and assistance to make and keep good relationships.  But most current policies and practices ignore these vital relationship issues, and most service dollars are spent on congregating people with developmental disabilities in settings which segregate them.  By suggesting that people could be kept safe and well in settings where strangers can drop in to check on quality of life, current approaches to safety fundamentally misdirect attention away from people’s most important safeguard, the safeguard that most service settings are most likely to discourage or disrupt.”  (John O’Brien and Connie Lyle-O’Brien)

Programs and systems don’t keep people safe.  Relationships keep people safe.

And now, a few fun facts:

  • Spectrum started providing shared living as an alternative to staffed residential services in 2003.
  • Requests for shared living have increased with each passing year, to the point that we anticipate more people being served in shared living by 2012 than in our traditional staffed residential services.
  • Spectrum has only ever operated one group home, the first home we opened back in 1988 (which is actually a duplex, with two self-contained suites).  Everyone else in our residential services lives in their own home or with one other person with a disability, supported by staff, or they are in a shared living arrangement.
  • Many of the people in our shared living services have lived in group homes in the past.  None has asked to move back into a group home.
  • The rate of caregiver turnover in Spectrum’s shared living services was 9% in 2010, compared to 20% turnover in our staffed residential services.

On behalf of Aaron, Ernie and the rest of Spectrum’s leadership team, I want to express our heart-felt appreciation to all of our shared living caregivers, and to those who support them.

For more information on shared living, click here or follow the links on the Spectrum website, www.spectrumsociety.org

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11 Comments leave one →
  1. Maria Glaze permalink
    November 1, 2011 2:41 pm

    Thank you for writing such an honest and respectful article on shared living. I’ve been longing to read something like this.

  2. Holli Durost permalink
    November 1, 2011 6:20 pm

    Beautiful.

  3. November 2, 2011 1:51 am

    Thank you Susan, for an excellent article! For so many of the people we have had the good fortune to support, shared living, with a committed friend or friends has been has been a long term, stable, successful experience. As you have noted, choice is a key. And regardless of the model of living arrangement, the most relevant component of safe, meaningful lives FOR ALL OF US in imbedded in the quality of our relationships!

  4. November 4, 2011 2:56 am

    Susan, thank you for the acknowledgment and validation of shared living as a respected and valued option for those seeking caring home environments.

  5. Jule Hopkins permalink
    November 4, 2011 4:54 pm

    Susan – what a great article you wrote. It is so well said and your title – that it is about Realtionships is a perfect reflection of this message. I also really liked your reference to the average times a person moves and what is typical for other people should also be a consideration for people with disablities. Thanks you so much for sharing your own agencies story and giving us such a wonderful example to follow. Well done!

    Keep up the great work and wonderful leadership that your agency gives to this field! Jule

  6. Cheryl Blake permalink
    November 7, 2011 9:04 pm

    Thanks so much for sharing the story of your agency’s journey to getting it right for people. I continue to see evidence of how hard your people work to find just the right fit for people you support regardless of their service request. Thanks for continuing in this great work.
    Cheryl

  7. November 9, 2011 8:08 pm

    Thanks Susan for reminding us that the secret to success supporting each other is the commitment of the people involved and our relationships with each other. Excellent article!

  8. Ernie Baatz permalink*
    June 25, 2012 1:40 pm

    Reblogged this on Being Person Centred.

  9. Shirley Birtwistle permalink
    June 29, 2012 7:44 pm

    Excellent article and I whole heartedly agree!!!

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