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A Visit to Onondaga Community Living in Syracuse, New York

June 30, 2011

 

“… in this great myth of individualism, we have created a culture . . . often indifferent to each other’s presence, wonder or human plight. But it feels imperative for me to say . . . those negative behaviors of cynicism, and anger, and withdrawal, and paralysis – which are worldwide in my experience – those negative behaviors are not who we are. And it’s not those negative behaviors that made your heart leap out. Whenever your heart leapt out, and you knew you needed to serve, that was a moment to recall because at that moment, you knew the truth about human nature. You knew who we are. And the motivation to be a servant leader is always, in my experience, from the recognition of who we really are. Beyond the cynicism, beyond the dependency, beyond the paralysis, beyond workers and colleagues and communities who don’t know how to talk to each other anymore, beyond all of that you knew at some point that in the human being, there is enormous capacity. And you wanted to help bring that capacity forth.”   Margaret Wheatley, from Servant-Leadership and Community Leadership in the 21st Century, Keynote, The Robert K. Greenleaf Center for Servant Leadership annual conference, June 1999  http://www.margaretwheatley.com/articles/servantleader.html

In June 2011 we were able to travel to Syracuse NY to visit with folks from Onondaga Community Living, an agency whose leader, Pat Fratangelo, has taught us much as a generous consultant and colleague.   In our work with consultant Dr. Michael Kendrick he has constantly encouraged us to take a longer, wider view of what’s going on around the world as we seek to improve our own practices.   In conversations with Pat, she would explain how Onondaga managed to priorise the role of individuals as leaders of expanding capacity and directors of very personalised services, unstintingly answering all our questions about “How exactly does that part work?”

However, we wanted to see and examine it first-hand and in particular were a bit mystified as to how the leadership and management might work.  Pat kept saying “the leaders and staff are just so great – I hardly have to do anything, they just do it all: we have amazing people.”  So this was one of our big questions – it’s not our experience that a bunch of amazing people just show up on your doorstep wanting to be amazing and innovative – you have to find them, find congruence, create a sustaining culture, constantly clarify one’s mission.

In the United States at this point, where social services are embattled in a rather desperate financial climate, we could only imagine how this constant re-energising of a singular mission might work.   Once arriving, and talking to other agency representatives we also realized that while both government and agencies are also looking at person-centred initiatives and other ways of doing things, most are struggling with traditional ideas and complicated, concurrent systems/streams of governmental funding/monitoring based on historic conceptions of disability which Onondaga has managed to funnel together to create something usable by staying so clear about their mission.   They have also, among other partnerships, been generous in their relations with government policy-makers in assisting them to find ways to support innovation, always assuming good intentions in all parties and positive outcomes.

Over the course of three busy days in June we met with Executive Director Pat Fratangelo, the three Directors (Residential, Vocational and Service Coordination), three residential coordinators, five house-mates, half a dozen folks served, a job coach, two family members, two board members and an academic consultant from Syracuse University’s Center on Human Policy, Law, and Disability Studies who put the work of Onondaga into context with other agencies concerned with systems change and organizational transformation towards more person-centred models.   We also presented a workshop, “Changing Roles in Supports in Community,” for about forty participants from five different agencies, parents and government workers at which there were opportunities for discussion of challenges and successes around New York state.    Our discussions focused on leadership, homes, home ownership, models of support, community inclusion strategies, quality of life, family leadership, vocational supports, person centered planning, how folks with disabilities are supported to choose house-mates and support workers and make changes in their lives, how funding streams are channeled to provide supports, and how services are monitored.

Some themes that ran through these conversations were transparency, clarity, person-centred choice-making, servant–leadership and authentic partnership.   Onondaga’s values and mission are embedded in language which is not just specific but singular and transformational – a great deal hinges on the housemate idea, which is its clearest conception of its mission, and once anyone involved experiences any part of that and understands it from any perspective they become, as David Pitonyak would say, part of the pack.   Pitonyak also says we are all of us “hot wired for belonging” – which is a central theme expressed in every aspect of the agency.   The leadership has managed to bring together people looking for an expression of that idea, who want to work on such a mission.  Communication ranging from overt to subtle, spoken to written, iconic to graphic recording, all resonates with this clear conception of service to an end of inclusion of all as gifted members of the village.

Pat Fratangelo’s presence is huge and unapologetic but there’s room for everyone’s presence and ideas and personality at this synergistic table -everyone’s gifts become more telling, more energized, more significant.   Despite or perhaps because of being in a world that’s not necessarily on the same path – pretty much every single person we talked to spoke about communication with awareness of it’s importance at each level.   One of the newest house-mates (a month into living with someone with a disability) talked about his communication in positive, inclusive terms that had little to do with disability or deficit.  The particular individual was very timid, with a very quiet whisper that was almost inarticulate (at least to us), but through the conversation was included as a participant making real choices, she’s tossing out ideas for us to toss back at him so he’s included, she including him in every part of the conversation, not just the simple easy parts, with an awareness of assistive communication but also of the idea of a conversational arc – that when we come together we create patterns of conversation and to be included in those patterns is to belong even if there are challenges in understanding and expression.  And all of it, from the house-mate’s perspective, is the authentic act of one friend supporting another.  It was not a lot different for her than it would be if she was introducing us to someone who was merely shy.   And by the end of about an hour we could discern him making choices – when I asked if I could take his picture, he chose where in his house from a couple of options, who would be in it, what to hold, what expression to have on his face, and then shook my hand.

What is interesting in this is the congruent continuum of someone with a short term of experience in relation to the most experienced of Onondaga’s supporters.  This was pretty much standard of our experiences of meeting folks that get support – a house-mate with 17 years experience gave the person with a disability he lived with as much accountability for communication with us as he could handle, but concurrently pointed out facial expressions, movement, repetition in facilitative ways that allowed us to communicate better with him.   One of the first things that the Onondaga CL Medicaid Service Coordinator said to us was that people here need to get to know those they support well enough to understand their communication.   She was really clear this was always a choice: “It can be only about the paperwork, service coordinators can make it about that . . . .   It needs to be portable, so that they can move on to communicate with others more easily.”

There’s this sense at Onondaga of what’s going on in the land (the state and the country), and that this is the oasis, and what one’s role in that oasis is.   People kept saying things like this.  Talking about subtle ways in which people communicate as if these are things that everyone notices all the time creates a cultural expectation that everyone will be noticing communication on some level.  This participatory leadership is the common co-creation that Onondaga supporters have all chosen to participate in – to create what Residential Director Richard Prue called an oasis, what one board member calls “a platypus” and another calls “way off the map and under the radar.”

Yet there’s an awareness and respect for all kinds of partnerships, from those with the folks supported to organize their services and their friends and families, to partnerships with other agencies, funders, policy-makers and various stakeholders.   No door is closed and nothing offered is not made transparent.   Vocational Director Lawton said, of supporting individuals in their goals for employment and inclusion, to always keep trying at a closed door “in a nice way,” but also to actively not close doors and remember the mission and also the golden rule, in practicable ways – if one wants all people to be treated the way one wants to be treated, Onondaga staff have figured out things like how bringing a dozen doughnuts in to a worksite will change a bunch of co-workers into an inclusive team of peers.

Onondaga has managed to get clear about elements that many agencies and groups have a lot of trouble being clear about: what they stand for, what they won’t stand for, their role as a horse of a different colour in the state and country and that they are not interested in being evangelical but in offering another option that is more individualized and firmly grounded in research that demonstrates personal/community satisfaction, cost-effectiveness, sustainability and an alignment with contemporary best-practices that is inclusive of people with significant historic challenges around behaviour, mental health (dual diagnoses), health issues, diversity and community development.

Factors we noted were:

– Clarity of Onondaga’s mission reflected in written language, interpersonal communication at every level and graphics.

– Clear accountabilities, personalized and driven by the gifts of each participant/stakeholder/leader.  Every interaction reinforces mission.

– The idea of satisfying regulations, but that regulations are not what drives the work of the agency.

– A wide, deep network of intentional and valued partnerships at all levels: community, families, clinical, academic, inter-agency, governmental.

– No “making do” – rather, an assumption of abundance and strengths.

– Offering themselves transparently but taking little interest in replication or evangelical pursuits: another way, without investment.  There is an enviable rigour of focus and intelligence: critique is welcomed.   The concern is do be a learning agency that is always doing better, not to hang your hat on some historic achievements, as great as those might be.

– This open-ness to communication is also true of teams and team members – meetings are open, participation is encouraged and is a way of self-improvement but not mandatory.

– A sustaining focus on growing leadership and participatory roles of the individuals supported, their families, board members, community, staff, house-mates, leaders at every level.

Those supported to organize their services, board members, supporters, community members, house-mates, staff and leadership team of Onondaga included us in as many parts of their work as was possible, and were gracious and welcoming.  We came away humbled and excited, with a great deal to consider and also to aspire to.   Our visit was a singularly worthwhile week of connecting and conversations and we hope to return to learn more.   To learn more about Onondaga Community Living, check out their website at www.oclinc.org or their blog   If you’re interested in their work and want to make a trip (go through Toronto, it’s cheaper and you can drive through Niagara Falls) contact Pat through the website – Onondaga is often cited as an exemplary agency and has frequent visitors from all over the world.

Thanks to John for allowing me to use his photograph.

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4 Comments leave one →
  1. June 30, 2011 3:28 pm

    Meeting Pat when she came to Denver & Vancouver was amazing!

  2. June 30, 2011 7:05 pm

    We could not have found a better group of three to join us for the week. Aaron, Ernie and Susan also deeply believe in putting the person first in all they do. They are worlds beyond us with the publishing that they do and left us with many fine gifts. They were also very generous in being able to do a full day presentation for our community on the changing role of the support worker. Evals from participants proved that the day was productive for all. When asked who should attend this topic in the future. The input was CEO’s and state bureacrats.

    We are certainly fortunate to have found each other and have had the opportunity to share many thoughts and ideas. We very much welcomed their input back to us about the trip. It is nice to know what others feel and see. Please come back again anytime!

Trackbacks

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