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LiveWorkPlay (With Notes) Presentation To YAI Conference 2013


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YAI Conference 2013 - Session 25 Community Inclusion: Keenan Wellar MA and Julie Kingstone MEd. From social programs to social change: building a welcoming community. Over a period of 4 years, the LiveWorkPlay organization engaged in a successful process of ‘de-programming’ by making a shift from congregated programs to authentic community-based.

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LiveWorkPlay (With Notes) Presentation To YAI Conference 2013

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  2. 2. Our team arrived in NYC on the weekend and we had the opportunity to visit the World Trade Centre 9/11 Tribute Site.Our amazing volunteer guide told us the story of the Survivor Tree which was buried and burned, uncovered, nursed backto health, then toppled by a hurricane, and ultimately has grown to 30 feet on the site. She also explained that herhusband was a tower survivor and asked us to remember not only those who perished, but also that more than 15,000people got out of the towers in about 100 minutes, and urged us to enjoy the possibilities of life. We hope that is amessage we can deliver today. In supporting people with intellectual disabilities we often become consumed withassumptions of what cannot be done instead of assuming that it will be done, if only we try, learn, and try again.2
  3. 3. This is our plan for the hour. We may need to move quickly on Tools & Tips and Communications in order to leave timefor questions.3
  4. 4. In his keynote yesterday Jonathan Mooney talked about all the focus on remediation of people with disabilities of allkinds, and how we must move beyond “fixing” people and make appropriate accommodations for their differences. Weagree wholeheartedly, and would add that what neurodiversity is all about is moving beyond accommodation to a pointwhere differences are welcomed and valued.4
  5. 5. We’ll start near the end then go back to the beginning. During the 3 year transition away from our day programstructure, we worked simultaneously on updating our guiding statements to more properly reflect on our work and itsintentions. Note in particular that our mission is “helping the community” this is of critical importance – yes, we helppeople with intellectual disabilities with strategies for having greater success with others in the community, but we seethe primary responsibility for reducing and eradicating the marginalization of people with intellectual disabilities as a rolefor the entire community.5
  6. 6. Our values statements are designed to align with the United Nations Convention on the Rights of Persons withDisabilities. These simple but powerful statements mean that a person with an intellectual disability has the right toexperience (and the support to experience) the world on an equal basis with others.6
  7. 7. We are not that far away! Come and see us sometime. A key characteristic of our organization is that we are deliberatelyleading-edge in our approach, constantly challenging our own practices and measuring them against the innovation andprogress of others on the local, national, and global scale. We will never be the biggest. But we can always try to be thebest we can be.7
  8. 8. KEENAN: His first career goal was to become a teacher, but he fell into a part-time job working with individuals andfamilies with developmental disabilities, then worked in school system, and met Julie.JULIE: She had a lengthy relationship with Christie Lake Camp and supporting economically disadvantaged children. As acareer she was interested in education and psychology, and then she met Keenan.We each had to make a living so when we started developing LiveWorkPlay together Julie was working in palliative careand Keenan was working for an information technology firm.We each have 3 university degrees. In our professional development in recent years Julie has focused on a lot ofoperational and strategic issues, Keenan has focused on communications and policy issues.We got married in 2001, 6 years after co-founding the organization, and 4 years after leaving our other careers to focuson LiveWorkPlay full-time.8
  9. 9. Why did we decide to start a charitable organization to help people with intellectual disabilities? It’s hard to say exactly,other than through happenstance as young adults we developed the awareness of their extreme marginalization in ourcommunity and felt compelled to try and make a difference.In the beginning we spent about two years with individuals and families, and various professionals involved in the sector,and our focus was on access – helping people access the existing resources in the community. But over time whattranspired was awareness of significant dissatisfaction with what was available – not only the barriers to services such aslong waiting lists, but real dissatisfaction with the limitations in terms of attitudes and practices related to housing,employment, and life in the community in general.9
  10. 10. Please watch this video “flash from the past” and tell us what you think of this public service announcement from about8 years ago.10
  11. 11. So what happened next is a story that we see again in social movements, the very act of organizing takes things inunintended directions. As we began to acquire resources, we built up infrastructures and developed relationships withfunders and eventually found ourselves replicating a lot of the same structures that we were supposed to be avoiding.This first took shape with the creation of a day program, which had the snappy acronym “SMILE” and the equally snappyfull name Skills and More for Independent Living and Employment. I want to emphasize that SMILE was extremelypopular. People wanted IN to SMILE so badly that we endured a combination of threats and attempts at bribery fromfamily members who wanted their son or daughter to be a part of it.And so with that sort of external validation it’s only natural that one feels a sense of pride and so without really noticing,our identity had essentially become “operators of one of the most popular day programs.” We likely could have keptalong that path and today have an even bigger and even better day program for which we’d win awards, get wonderfulmedia coverage, and most likely enjoy additional financial success.11
  12. 12. Doing the wrong thing can be really popular!The whole idea of the sheltered work environment we created was really a lack of belief on the part of the staff, familymembers, and government that the people we support could get and keep jobs.We also enjoyed lots of positive benefits in terms of publicity and control, not to mention funding – we could likelyrecreate and rebrand this project in 2013 and get it funded all over again. Of course, we’d have to ask our members toquit their real jobs and come back.12
  13. 13. Most people with intellectual disabilities don’t find themselves shackled by the courts, they find themselves shackled bysomething that Canadian Disability Hall of Fame inductee and author David Hingsburger calls The Prison of Protection.Here we see the Prison of Protection, which one could view as a guide for how to construct a vulnerable person – don’ttell them about sex, protect them from romantic relationships, make sure they rely on others to make decisions, andmake sure they are afraid of strangers. That’s a great way to create victims, and the system is doing a great job of it.Professor Dick Sobsey at the University of Alberta is in my opinion the world’s leading expert on the mistreatment ofpeople with disabilities. He has been trying for decades to draw attention to the elevated rates of abuse for people withintellectual disabilities, which is 8-10x higher than the average citizen.The issue of decisions is particularly important, and this is a real barrier to full citizenship. We need to find a way that aperson with an intellectual disability who has their own apartment and a paid job doesn’t get turned away when they tryto open a bank account because they aren’t competent to understand the small print – or like the rest of us, they don’thave the skills to fake their competence. The United Nations Declaration on the Rights of Persons with Disabilities, whichCanada has signed and ratified, proposes that we should be developing a method of supported decision-making,whereby a person can have a legally recognized system of getting help with their decisions without giving up the right tobe in charge of those decisions and have them respected before the law.13
  14. 14. One of the consequences to the medical model for people working in any field related to intellectual disabilities is that itseems we are forever doomed to a scarcity conversation. I don’t know about all of you, but when I start to get worriedabout burnout, it’s usually because I’ve gotten caught up in in some sort of conversation about scarcity, and theconclusion of those conversations is always that there is nothing to be done without additional resources.But the thing is, if one the outcomes of our supports and services is to segregate citizens with intellectual disabilitiesfrom others, then no matter how much money we have, it’s never going to result in people with intellectual disabilitiesachieving full citizenship and social inclusion.If we shift to a community model, or social model, there is limitless capacity for change, because the community alreadyhas all the answers, and they just need our help to make it happen. There are apartment buildings to live in. There areworkplaces to work in. There are community centres to enjoy sports and culture. The challenge before us thereforeshould be how to include people with intellectual disabilities in that abundance that is the community, rather than howto maintain a medical model of disability that will always suffer from financial scarcity and is not even designed to realizeinclusive outcomes.14
  15. 15. It’s time for a story to help us enter into the discussion about WHY we decided to make a dramatic shift from a programmodel to a social change model. This is Phil. Phil is not great at reading or writing, and his verbal communication isdifficult to describe. Some people say he reminds them of Robin Williams. If you know and respect Phil, you see hiscommunication as very rich and you see Phil as fully capable of communicating his wants and needs. Phil and his parentsgot told “never” about a lot of the possibilities discussed for his future. But Phil has gone on to live in his ownapartment, and also to shop for his own groceries. But before that was possible, a LiveWorkPlay Community Connector(staff) helped Phil get to know the customer service staff, who treat him with respect.15
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  17. 17. One of the challenges with making the shift from a program or social services approach to a social change or community-based approach is that investing in the community can result in much better returns, but they are also less secure. Theday program or sheltered workshop or group home or segregated recreation program is always “there.” Helping peoplebelieve in in what is possible requires sharing the experiences of others and bringing families together for unbiaseddialogue.17
  18. 18. There is a certain six letter word that has the power to both inspire and frighten. Sometimes it does both at the sametime. Yes, C-H-A-N-GE. Change! Last year I had the opportunity to hear Dan Heath speak at a United Way Ottawa event.He’s one of the authors of the popular book Switch: How to Change Things When Change Is Hard. When Dan and hisbrother Chip started their research on change, the two comments they heard from people most often were: "Change ishard.“ "People hate change." What they found was that even when the logical side of people’s brains recognize the needfor change, that doesn’t mean the emotional side is ready to come along. But when both line up, then people perceivechange as positive.18Keenan Wellar "Being The Change" LiveWorkPlay AGM09/23/2011
  19. 19. There are countless reasons for not trying to create social change, at the individual, organizational, or systems level.Which makes for a self-fulfilling prophecy that change is too difficult. At LiveWorkPlay we expect to fail and all it meansto us is we haven’t yet found the solution.19Keenan Wellar "Being The Change" LiveWorkPlay AGM09/23/2011
  20. 20. LiveWorkPlay is not a “family organization” but has always recognized and benefited from the contributions of familymembers as the key partnership in supporting people with intellectual disabilities to have a good life. But we are carefulto make sure that we do not overstate the relationship to mean that other citizens are not welcomed as contributors,problem-solvers, and leaders of the inclusion movement. There is often a disconnect between organizations that arepromoting inclusion while at the same time are excluding (explicitly or more subtly) the contributions of others.20
  21. 21. Without a day program as the “tie that binds” we wondered what would happen to the strength of our internalcommunity – while nobody could disagree that we needed to engage the wider community as a key to inclusiveoutcomes, would people continue to rally with each other? Would individualized support mean the end of collectiveefforts? This has not happened, and in fact we are averaging one major event per month, mostly of the community-building variety, where people gather to share a meal and stories. The growth is not from our members and their family,the growth is from other people in the community who have joined in – like co-workers and employers, volunteercolleagues, and extended networks. This helps build community capacity and is also an encouraging message fornewcomers who have yet to see what “social capital” means in a practical sense.21
  22. 22. So what does a neurodiversity approach look like in action? It’s about shifting away from a social services systems approach to asocial change approach.This requires acknowledging that the routine status of people with intellectual disabilities in society at present is to be separatedfrom other citizens. In effect, they are a sub-class of citizens with taxpayer-funded mechanisms that make it difficult for them to riseto full citizenship.I think some of the most surprising progress would be in the area of employment. I have to be honest, there are large numbers ofpeople working now where I just didn’t see paid employment in their future. They proved me wrong. Sometimes being wrong is thegreatest feeling in the world.When we look at everything in the brown section here, there are a lot of best intentions that historically represented improvementsover extreme isolation and neglect. But you know, at conferences like this one 30 years ago, there were conversations about socialrole valorisation and community inclusion, and moving beyond a systems life, and I think it’s fair to say that our infrastructuresremain focused mainly on remediation and accommodation, and are in many ways counter-intuitive to people with intellectualdisabilities living as fully valued citizens. How can exclusive environments hope to achieve a culture of neurodiversity?I want to emphasize that for me this is not about saving money, and yet, at the same time, here we are in these days of scarceresources, and the fact is, if we have success with what is going on here in the green section, there is huge potential for costreduction, and in many cases, we are talking about some individuals that won’t need any systems help at all, which frees up fundsto help others, including those with intensive needs that are difficult to serve.22
  23. 23. Increasingly agencies who are involved in supporting people with intellectual and developmental disabilities “talk thetalk” of person-centered approaches, but in reality, they are mostly just using different forms to offer a limited set ofchoices. Individualized support in pursuit of community inclusion requires transparency about limits and a continuouseffort to remove systems barriers to inclusive outcomes.23
  24. 24. Have you ever asked a person with an intellectual disability to list all of the important people in their lives? How many ofthe names they come up with would be in the red list, and not in the green list? How stark a difference in that list is therefor the average person with an intellectual disability versus other citizens?24
  25. 25. Above right, Ian and Warren Murphy (aka the twins) enjoy a beer in their condominium apartment with mom Elaine. Likemany parents, Elaine and her husband Jack recognized they could not keep the boys at home forever, but were unsureabout other options. Over a period of several years (including a demonstration project) they made the move to living in ahome of their own with “outside in” support from LiveWorkPlay.Below right, Caroline Matte was caught in the social services safety net which kept her from homelessness but she alsobecame lost in the system, living in a large group residence with a tiny footprint of private space. This lasted for abouttwo years during which time Caroline, an active artists, ceased to paint and draw.25
  26. 26. LiveWorkPlay has developed excellent partnership with local non-profit housing providers such as Centretown CitizensOttawa Corporation where Caroline now has an accessible apartment unit. Her desire to paint and draw has returned,and the latest and greatest news is that Caroline has found love! At age 46 she has met boyfriend Jason and they havebig plans for the future.26
  27. 27. Again, many of the systems solutions of today came from the best intentions of yesterday and have resulted in themaintenance of barriers to inclusion in the future. Where people with intellectual disabilities are congregated in a worklike setting and work for subminimum wage, we need to come up with honest answers to questions like: is shelteredwork an accommodation of disability, or is it an unfair assumption about lack of worth of people with disabilities in thelabour market and ultimately in society itself.At LiveWorkPlay we have largely abandoned even our own traditional thinking about what it means to be “job ready.” Foran individual that states “I want to work” even as we help them improve their chances of being hired, we keep an openmind. For example, the story of Jeremy and Vaughn (coming up).27
  28. 28. We had known Jeremy for only a very short time last year. The opportunity to support him came up because his familywas in crisis. Jeremy had never had a paid job before, but he was clear that he wanted to work. As a result of apresentation to a local Rotary club, Vaughn approached us, and in reviewing our list of members looking for work, Jeremywas the only possible fit, so with a number of steps we helped bring the two together and the rest is history.28
  29. 29. If we can’t even bowl together, is the dream of neurodiversity and an inclusive community realistic? Why is there still somuch “special” out there: education, sports, and even recreational bowling?29
  30. 30. The reality is, many of our members have developed such busy lives that our staff can’t find time to meet with them tocheck in! This includes post-secondary education (where we feel we are just getting started in being successfulsupporters and advocates).30
  31. 31. Systems are a reality. They are necessary. But when you find yourself struggling to determine the value of a particularproposal, endeavour, or activity, ask yourself how it supports the development of the individual. We challenge ourselveswith this all the time. Sometimes we have to compromise, but being aware that you are compromising is sometimes thebest we can do.31
  32. 32. Well-intentioned organizations and individual staff members that see the social capital deficit for people with intellectualdisabilities often try to fill that void themselves. This is dangerous and sad. By creating such a complete dependency, thefuture of the individual is tied almost exclusively to the future of the organization and the paid staff in their lives. Sorather than attempting to fill the void ourselves, we seek to act more as a bridge, building connections inneighbourhoods, workplaces, and social relationships.32
  33. 33. While many of our 120 active volunteers contribute through 1:1 relationships (some of which develop into friendships)volunteers are also leaders and develop initiatives of their own, like the LiveWorkPlay Race Weekend Team which wasstarted by volunteers and continues to be lead by them with minimal staff involvement.33
  34. 34. Sometimes organizations limit the potential contributions of volunteers by prescribing what their role will be. Volunteersare also a lot of other things – they probably work somewhere and have all sorts of personal and professionalconnections. With every volunteer that invests in getting to know one of our members (and vice-versa) this opens up aworld of opportunities. While it is often assumed that these relationships are largely a one-way benefit, this simply is notthe case – neurodiversity is being realized every day through 1:1 relationships of mutual benefit.34
  35. 35. There are countless reasons for not trying to create social change, at the individual, organizational, or systems level.Which makes for a self-fulfilling prophecy that change is too difficult. At LiveWorkPlay we expect to fail and all it meansto us is we haven’t yet found the solution.35Keenan Wellar "Being The Change" LiveWorkPlay AGM09/23/2011
  36. 36. We serve about 100 people with intellectual disabilities a year – noting that a few of the people we are supporting reacha point in their lives where they are just plain done with the system – they’ve got a job, a home, and a network of naturalsupports, rendering agency support redundant. The only thing that trumps big moments like a person we are supportinggetting their first job or their first apartment is the moment when they tell us “It’s been nice, but I’m not sure I need youanymore.” Shouldn’t that really be our goal – even if we might not always get there?36Keenan Wellar "Being The Change" LiveWorkPlay AGM09/23/2011
  37. 37. When Chris Jones lost his mother with little notice and little opportunity for planning, the immediate systems responsewas to recommend systems solutions. What happened instead (and we can still hardly believe it ourselves) is theLiveWorkPlay community and our community partners rallied around Chris and we found solutions that were right forChris. With little decision-making experience we did our best to listen careful during a very stressful time for him with bigdecisions that needed to be made. Chris now has a place to live that he loves, has his own dog-walking business thatpays well, and has many friends and hobbies that he enjoys.37
  38. 38. The reality is, the day program was pretty easy – easy to run, easy to schedule, easy to count – we could send in our statsjust by taking x people times x days times x hours a day. Nobody ever asked us if the day program was accomplishinganything beyond filling time. We tried really hard to be great at running a day program. But what kind of outcome is that?Certainly not one that promotes neurodiversity! What we do now is HARD and yet we all love doing this work becausewe are contributing in a real way to changing lives and changing our community.38
  39. 39. This is a simple and yet highly effective tool for annual reviews with individuals and families, or for any sort of problemsolving at all. We used it as a staff team at our 2012 retreat and as individuals and as a collective, we came up with allsorts of great ideas that saved the organization time and money.39
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  41. 41. We use these personal profiles with staff, volunteers, and members.41
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  49. 49. Sometimes non-profit organizations forget that there is more to partnerships than funding. For example, when the localUnited Way Ottawa realigned their focus areas to include the employment of people with disabilities, we jumped at theopportunity to work with them to communicate a positive message about people with intellectual disabilities in theworkforce. They used their substantial network to leverage all kinds of free public service message space, and in helpingdeliver the message, we of course received the additional benefit of being seen as leaders in our field.49
  50. 50. Because we have such a strong on-line presence many people are often shocked to find out that we are a relatively smallorganization. We use Facebook not only as a public networking tool but also for a variety of internal communicationsstrategies. We have focused on Facebook, YouTube, and Twitter as our primary social media channels and are currentlygrowing our LinkedIn presence. Our leadership and entire staff team have an accessible public presence on social mediathat has contributed to our reputation for transparency and accessibility. It has also ensured that we are attractive toyounger volunteers and staff (average age of staff team is 32 and average age of volunteers is in a similar range but alsoincludes many retirees – they like social media too!).50
  51. 51. Whether trying to help one individual make a shift in their life, or looking to make a bigger change at the organizationalor systems level, it can all seem very daunting. But the best way to start is just to start. One small change leads toanother. Trying to script out the change in 500 page binder often creates nothing but a paperweight. Explore the benefitsof real-time strategic planning. This has helped our staff, board, and membership not only to make great decisions but tobe comfortable with a process of change that is driven by demonstrated needs that change over time – not by what thebinder says we are supposed to do next.51
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