Presence To Contribution: A Welcoming Community For People With Intellectual Disabilities

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This presentation formed the basis of a webinar delivered through the Community Networks of Specialized Care. The presenter is Keenan Wellar, co-leader and director of communications at LiveWorkPlay in Ottawa. Attending directly and remotely were representatives from about 20 organizations across Ontario.

From 2008-2010, the LiveWorkPlay charitable organization in Ottawa engaged in a successful process of "de-programming" by completing a shift from congregated programs to authentic community-based supports and outcomes based on flexible and individualized person-centered planning. They have been living this new way of being for the past three years and will share what they have learned, with a particular focus on life-changing outcomes for individuals who have an intellectual disability, as well as a "social capital" approach to partnerships with citizens and organizations in support of a more inclusive community.

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Presence To Contribution: A Welcoming Community For People With Intellectual Disabilities

  1. 1. From 2008-2010, the LiveWorkPlay charitable organization in Ottawa engaged in a successful process of “de-programming” by completing a shift from congregated programs to authentic community-based supports and outcomes based on flexible and individualized person-centered planning. They have been living this new way of being for the past three years and will share what they have learned, with a particular focus on life-changing outcomes for individuals who have an intellectual disability, as well as a “social capital” approach to partnerships with citizens and organizations in support of a more inclusive community.
  2. 2. From 2008-2010, the LiveWorkPlay charitable organization in Ottawa engaged in a successful process of “de-programming” by completing a shift from congregated programs to authentic community-based supports and outcomes based on flexible and individualized personcentered planning. They have been living this new way of being for the past three years and will share what they have learned, with a particular focus on life-changing outcomes for individuals who have an intellectual disability, as well as a “social capital” approach to partnerships with citizens and organizations in support of a more inclusive community.
  3. 3. AGENDA Introduction: Key Concepts: Neurodiversity, Possibilities, Social Capital Background: A Little Bit About Me (Why Listen?) The LiveWorkPlay Journey: The Early Years The Program Years De-Programming (Why Change?) Being The Change: Person-Centered & Community-Based Living Supports: Enjoying a home of one’s own – lessons and tips. Work Supports: Employment is not the only thing…but it can be a big thing! Play Supports: Seeing the people and possibilities in the world around us. Involved Community: Volunteers and partners (couldn’t do it without them). Conclusion: Questions & Follow-Up
  4. 4. Here is my plan for the session. I’ve never done this exact presentation before and a webinar is a bit of a different environment for me, and I realize some of you may need to come and go over the next two hours, so this is an overview of what you can expect. If you are involved in one particular type of support it might be tempting to tune in just for that topic, but my caution on that would be that in the case of most of the individuals we support, our engagement with them is often quite broad and it all works together.
  5. 5. It always seems impossible until it is done. Nelson Mandela The secret of change is to focus all of your energy not on fighting the old, but on building the new. Socrates
  6. 6. In supporting people with intellectual disabilities we often become consumed with assumptions of what CANNOT be done instead of assuming that it WILL HAPPEN, if only we try, learn, and try again. When we think of a vision like “a community where all citizens belong” it can seem rather daunting and sad that systemic discrimination and public attitudes continue to get in the way. But in the context of broad social progress such as the negotiated ending of apartheid in South Africa, isn’t the belief that people with intellectual disabilities should be living, working, and playing in the community wholly realistic and attainable?
  7. 7. NEURODIVERSITY The acceptance and embrace of people with cognitive differences is an idea whose time has come. The sudden prominence of this term is an indication of how rapidly our field is evolving and how dramatically parents and practitioners are shaping the public dialogue. What these change agents have in common is a determination to open minds long closed to the potentials and possibilities of people once dismissed because of their differentness. Remediating  Accommodating  Valuing
  8. 8. NEURODIVERSITY was the theme of the 2013 YAI International Conference: “The acceptance and embrace of people with cognitive differences is an idea whose time has come. The sudden prominence of this term is an indication of how rapidly our field is evolving and how dramatically parents and practitioners are shaping the public dialogue. What these change agents have in common is a determination to open minds long closed to the potentials and possibilities of people once dismissed because of their differentness.” Historically the approach to supporting people with intellectual disabilities has focused on “remediation” of the disability – in essence, helping to “fix” the individual so they can be successful. Over time some responsibility for reducing exclusion came to be situated with the community, expressed as “accommodation” or “toleration” whereby discrimination becomes legislatively and attitudinally less acceptable. In current times, progress is increasingly viewed in the light of whether or not people with intellectual disabilities are VALUED for their contribution to the community. In other words, that some of their “differences” as a group and as individuals contribute welcomed forms of diversity.
  9. 9. buildingsocialcapital.org tlccanada.groupsite.com
  10. 10. Everything I have to say here today stems from two fundamental beliefs and concepts: social capital and person-centred thinking. You’ll see references to Helen Sanderson and Al Condeluci later in this presentation, Helen is a key player in the Learning Community for Person-Centred Practices, and Al has a leadership role with the Interdependence Network. I am not sure how frequently these two concepts are combined, but to me it is obvious than anyone in human services (as an individual or as an organization) should be grounded in person-centred thinking and planning, and secondly that if we believe in the social inclusion for people with intellectual disabilities, this is only going to take place once people with intellectual disabilities and other people in the community are connected through a wide variety of relationships.
  11. 11. Huronia Regional Centre 1876-2009 Community Living Founded 1953 Ontario Commits To Closures 1987 Social Inclusion of Persons Act 2008 POST-INSTITUTION DEVELOPMENTAL SERVICES PARADIGM LIFELONG SEGREGATION LOCATED “IN THE COMMUNITY” DAY PROGRAM/SHELTERED WORKSHOP | GROUP HOME | SPECIAL SOCIAL PROGRAMMING DECISIONS: SYSTEMS-DIRECTED and/or STAFF-DIRECTED and/or FAMILY DIRECTED NEW DEVELOPMENTAL SERVICES PARADIGM: TRUE “COMMUNITY MODEL” FEATURING WHAT NON-DISABLED CITIZENS EXPECT POST-SECONDARY EDUCATION | EMPLOYMENT | HOME | SOCIAL LIFE | CITIZENSHIP | RELATIONSHIPS DECISIONS: PERSON-DIRECTED, SUPPORTED by PAID PERSONS and/or FAMILY and/or PERSONAL NETWORKS
  12. 12. It is important to understand the evolution of human services and in particular the approach to people with intellectual disabilities. For the sake of time, and because it’s convenient to align it with my own journey in this field, I’m going to start my discussion about transformation in the middle of the 1990s. By this time the Government of Ontario was a decade into their commitment to closing the province’s three mass institutions: Huronia, Rideau Regional, and Southwestern Regional. But starting in the 1950s there was already a shift towards the post-institution paradigm, which seeks to geographically locate people with intellectual disabilities, but only in limited ways does it pursue or achieve inclusion in the community. By the late 80s and the early 90s a groundswell of voices is calling for changes to the segregation paradigm. People with intellectual disabilities (represented through formal movements such as People First), their family members, educators, researchers, policymakers, and certain leaders within the professional developmental services sector are pointing out that it’s very life-limiting to channel people into a life of segregation. It’s important to note that the key challenge here was not so much based on issues with the quality of the programs, but rather with the harsh reality that this system was not even trying to help people enjoy a full life in the community. Its focus was to provide a life in a parallel society. The rationale for this includes many well-intentioned ideas common to any “medical model” of human services. In essence, the act of being born with an intellectual disability is seen as a “problem” that creates a person as vulnerable and incapable, and therefore access to and participation in a parallel social structure within the community was the right thing to do.
  13. 13. Concepts like the dignity of risk and social role valorization combined with longstanding movements for civil rights and the right to self-determination fuelled a new way of thinking: that having an intellectual disability is not a problem. Being denied a life in the community due to barriers created by that community is the problem to be solved, and we should be focusing our energy and resources on minimizing and removing those barriers. In 2006 the Ontario government after some 2 years of preparation releases Opportunities and Action: Transforming Supports in Ontario for People who have a Developmental Disability. There was remarkable clarity to this document, as an expression of public policy: we are moving beyond segregated models because people with intellectual disabilities have the same rights to a full life in the community as anyone else, and our system of supports and services needs to change to support community-based inclusive outcomes. Which brings us back to LiveWorkPlay: formally launched in 1997 after about three years of community consultation, we embraced the new paradigm, accepting that while we did not have many of the answers about how to achieve it, we believed it was the right thing to do. We took part in government consultations in the early years of the new millennium with great enthusiasm, as well as some skepticism. When Opportunities and Action was released, it was timed almost perfectly with the annual LiveWorkPlay Visioning Day. I began reading the document and I was elated. The language was almost identical to our own. It was unequivocal. It was, to a great degree, close to being everything we’d hoped for. Of course, I don’t have to tell this audience that a policy document is not legislation. It doesn’t reorganize bureaucracies, generate revenues, or channel resources.
  14. 14. Helping the community welcome people with intellectual disabilities to live, work, and play as valued citizens
  15. 15. Through a process of slow but steady growth, LiveWorkPlay now has 12 full-time staff, more than 140 volunteers, and an annual budget of over $1 million dollars. In a typical year less than 60% of LiveWorkPlay funds coming from government sources. 100% of the annualized government funding we do receive comes from the Ontario Ministry of Community and Social Services, with whom we established a relationship for the first time in 2001. What we do is often described as “innovative” and this is usually intended in a flattering way, but internally we look at a lot of what we do as trying to free people with intellectual disabilities and their families from the many systemic “innovations” that have served to separate them from life in the community. Our role is to work with the community to not only support inclusion, but to go beyond: beyond tolerance, and beyond accommodation, to a place where we embrace diversity by understanding and valuing what people with intellectual disabilities have to offer. This is described by some as the movement for NEURODIVERSITY and although the term itself has not caught on everywhere, the concept and its spirit is certainly one way of understanding our ultimate goal at LiveWorkPlay – that one day we and all agencies involved in supporting the inclusion of people with intellectual disabilities will be completely unnecessary – that current assumptions about their lives will be turned upside down, such that their rights and their value as full community members will be the common paradigm.
  16. 16. We’ll start near the end then go back to the beginning. During the transition away from our day program structure, we worked simultaneously on updating our guiding statements to more properly reflect on our work and its intentions. Note in particular that our mission is “helping the community” this is of critical importance – yes, we help people with intellectual disabilities with strategies for having greater success with others in the community, but we see the primary responsibility for reducing and eradicating the marginalization of people with intellectual disabilities as a role for the entire community.
  17. 17. Our values statements are designed to align with the United Nations Convention on the Rights of Persons with Disabilities. These simple but powerful statements mean that a person with an intellectual disability has the right to experience (and the support to experience) the world on an equal basis with others. Not “separate but equal” but rather “included and equal.”
  18. 18. A little bit about Keenan 2013 19981998 2007
  19. 19. Many of you listening today may have a very personal reason for choosing to work in this field, such as a family member or a friend with an intellectual disability that you knew growing up, or maybe like me it was a bit more random. I’m not someone that had any experience or understanding about intellectual disabilities until I was a university student in my 20s and I took a part time job with specialized recreation program here in Ottawa. I later worked as a Teaching Assistant in a Special Education classroom where I developed some close bonds with individuals and their families, and also worked for them as a Special Services at Home worker. I went to Teacher’s College and continued my involvement with many of those individuals and families, and it is at this time that along that with some other young adults doing similar work, the beginnings of what would become LiveWorkPlay started to take shape. In addition to hosting meetings and helping make connections between individuals and families, we also started to educate ourselves about the developmental services system and wanted to contribute to positive change. It is also during this time that I met Julie Kingstone, with whom I formally co-founded LiveWorkPlay in 1995. In 1997 we left our “regular jobs” – mine as a Project Manager in the IT sector, and Julie as a therapist in palliative care at Bruyere – and decided to make LiveWorkPlay a full-time vocation. The work of a non-profit start-up brings long hours and so to make things easier, Julie and I decided to get married in 2001. There’s not much we won’t try if we think it will help the organization and especially people with intellectual disabilities and their families. For example, in 2007 we purchased a home with an apartment in the basement and for three years we hosted people with intellectual disabilities who wanted the opportunity to practice living on their own with an eye to moving to apartments in the community. In 2013 we tried out for Amazing Race Canada with the hope of having the opportunity to champion our cause to a national audience, we did not make it to the final round but we had fun trying. Because of LiveWorkPlay I’ve been exposed to so many amazing people and situations – everything from capsizing a kayak in the ocean off of Punta Cana to promoting the employment of people with disabilities as a Focus Area Champion for United Way Ottawa.
  20. 20. http://j.mp/ablastfrompast
  21. 21. Please watch this video “flash from the past” and tell us what you think of this LiveWorkPlay public service announcement from about 8 years ago.
  22. 22. What Did You Think Of Our Video?
  23. 23. As you can see, most everything we were happily promoting in this video supports segregation and does not facilitate many actual transitions to life in the community. This was not intentional. Sometimes the very act of organizing takes things in unintended directions. As we began to grow the organization and acquire resources, we built up infrastructures and developed relationships with funders 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 snappy full name Skills and More for Independent Living and Employment. I want to emphasize that SMILE was extremely popular. People wanted IN to SMILE so badly that we endured a combination of threats and attempts at bribery from family 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 kept along that path and today have an even bigger and even better day program for which we’d win awards, get wonderful media coverage, and most likely enjoy additional financial success.
  24. 24. Doing A Wrong Thing Can Be Immensely Popular
  25. 25. Doing the wrong thing can be really popular! The whole idea of the sheltered work environment we created was really a lack of belief 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 likely recreate and rebrand this project in 2013 and get it funded all over again. Of course, we’d have to ask our members to quit their lives and come back to the sheltered workshop or day program. That’s not going to happen!
  26. 26. SCARCITY ABUNDANCE
  27. 27. These ideas are mostly from the 1960s and 19070s so why do day programs and group homes and sheltered workshops persist as the dominant model of service? Aside from the obvious barrier that big systems have a huge amount of inertia, the programmatic model also offers the appearance of safety, security, and sustainability. It’s not that we don’t all need systems from time to time – the challenge with respect to people with intellectual disabilities is that they can spend their whole lives in the systems world, and it’s a self-fulfilling prophecy – if we deem them too vulnerable to be a part of the community, that’s exactly what will happen. One of the consequences to the medical model for people working in any field related to intellectual disabilities is that it seems we are forever doomed to a scarcity conversation. I don’t know about all of you, but when I start to get worried about burnout, it’s usually because I’ve gotten caught up in in some sort of conversation about scarcity, and the conclusion 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 disabilities from others, then no matter how much money we have, it’s never going to result in people with intellectual disabilities achieving full citizenship and social inclusion. If we shift to a community model, or social model, there is limitless capacity for change, because the community already has all the answers, and they just need our help to make it happen. There are apartment buildings to live in. There are workplaces to work in. There are community centres to enjoy sports and culture. The challenge before us therefore should be how to include people with intellectual disabilities in that abundance that is the community, rather than how to maintain a medical model of disability that will always suffer from financial scarcity and is not even designed to realize inclusive outcomes.
  28. 28. Go Phil!
  29. 29. It’s time for a story to help us enter into the discussion about WHY we decided to make a dramatic shift from a program model to a social change model. This is Phil. Phil is not great at reading or writing, and his verbal communication is difficult to describe. Some people say he reminds them of a fast-talking Robin Williams. If you know and respect Phil, you see his communication as very rich and you see Phil as fully capable of communicating his wants and needs. Phil and his parents got told “never” about a lot of the possibilities discussed for his future. But Phil has gone on to live in his own apartment, shop for his own groceries, play on a community soccer team, and get himself around the city to work out with friends at the YMCA or go out for a night at the pub. After Phil moved in to his own apartment he relied on his parents to do his shopping, and they asked a Community Connector (a LiveWorkPlay staff member who helps people make connections in the community to enjoy sports, hobbies, courses, clubs, and more) to see if Phil could do his own shopping. It turned out Phil had some bad memories about trying to do his own shopping in grocery stores. One challenge seemed to be the idea that the store employees or customers might get mad at him for being too slow or saying things they didn’t understand. So, after some preparatory work, Phil was introduced to the customer service staff who assured him that he was a welcome and respected customer. Recently Phil realized another of his personal goals: to host a party in his apartment. He did the shopping (top left) and like any of us, was very proud about celebrating this important life passage of having friends over for food and drinks for the first time. Phil has also made other connections such as his evolving friendship with Catherine (pictured left of Sass Jordan and Phil!). Initially introduced by LiveWorkPlay to explore a shared interested in reading (Phil wanted to do more reading and Catherine likes to read) their relationship has grown – Phil recently participated in a fundraising event through an invitation from Catherine, and he was a huge asset, heralded for generating significantly increased donations!
  30. 30. Social Services/Medical Approach Social Change/Community Approach Not about fixing people with intellectual disabilities so they can be more normal and fit in with others Exclusion is everyone’s issue and as a community we must all work together to be welcoming and inclusive We have learned to appreciate that people considered “different” often bring important contributions to society (e.g. racial differences) and there is lots of work in progress (e.g. sexuality). Neurodiversity is at a very preliminary stage. How many people honestly believe that people with intellectual disabilities truly BELONG (and will take action to back up that thought?).
  31. 31. The emerging story of Phil the citizen helps remind me of the dangers of medical model thinking – most of the systems response to Phil over the years has been to contain, control, and protect him. With person-centred support and a focus on building his social capital, Phil is clearly much happier and much more excited for the future. Instead of always feeling like a “problem” he has many more people in his life that respect, appreciate, and value him.
  32. 32. Prison of Protection Protect from Sexual Information Vulnerable Protect from Relationships Abuse information: Dick Sobsey (Google him) Protect from Decision-Making Person Protect from Society Adapted from: David Hingsburger (Google him)
  33. 33. Here we see the Prison of Protection (I first heard about this from Dave Hingsburger) which one could view as a guide for how to construct a vulnerable person – don’t tell them about sex, protect them from romantic relationships, make sure they rely on others to make decisions, and make 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 of people with disabilities. He has been trying for decades to draw attention to the elevated rates of abuse for people with intellectual 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 a person with an intellectual disability who has their own apartment and a paid job doesn’t get turned away when they try to open a bank account because they aren’t competent to understand the small print – or like the rest of us, they don’t have the skills to fake their competence. The United Nations Declaration on the Rights of Persons with Disabilities, which Canada 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 to be in charge of those decisions and have them respected before the law.
  34. 34. “Some things have to be believed to be seen.” ― Madeleine L'Engle (A Wrinkle In Time)
  35. 35. 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 are less secure, at least in the short term. The day program or sheltered workshop or group home or segregated recreation program is always “there” (or so it seems, but sometimes they close, move, or otherwise don’t work out). Helping people believe in what is possible requires sharing the experiences of others and bringing families together for unbiased dialogue. The security offered to those who have broad professional and personal networks is much richer and more longterm than what systems can provide.
  36. 36. When Dan Heath and his brother Chip started their research for their best-seller Switch: How to Change Things When Change Is Hard , the two of the most common comments they heard about change were: “Change is hard.” “I hate change.” 38
  37. 37. There is a certain six letter word that has the power to both inspire and frighten. Sometimes it does both at the same time. Yes, C-H-A-N-GE. Change! Two years ago 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 his brother Chip started their research on change, the two comments they heard from people most often were: "Change is hard.“ "People hate change." What they found was that even when the logical side of people’s brains recognize the need for change, that doesn’t mean the emotional side is ready to come along. But when both line up, then people perceive change as positive. We should be open as individuals and organizations that change can be threatening – individuals and families often view change in much the same way. Community life is messy, and so support to help a person live their life should look pretty messy too! Systems can be tidy, like files in a drawer. It’s a new type of experience to receive supports and services that have a deliberate goal of being less than tidy.
  38. 38. “Agencies trying to create and sustain person-centred services based in the community are spectacularly more successful at it than those agencies who believe it is impossible and refuse to try.” (Modified quote from Dr. Michael Kendrick) 40
  39. 39. 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 means to us is we haven’t yet found the solution. This is a critical aspect of staff training in a person-centred environment – since the possibilities for what people want out of life are literally endless, the answers don’t come out of a binder – there is a lot of listening, researching, networking, experimentation, and trial and error required. Individuals and family members need to have realistic expectations – for example, reminding people that agencies don’t create employment, employers create employment – so it often takes time to find the right employer for developing a relationship that could make for the right job in the right place at the right time. In the meantime there are often opportunities that can be developed more quickly, such as pursuing hobbies, volunteerism, or educational opportunities. Sitting and waiting for change is very difficult for anyone – it is important to help the individual and their family see that work is being done even if the outcomes aren’t yet the end result they are hoping for.
  40. 40. We Are Family
  41. 41. LiveWorkPlay is not a “family organization” but has always recognized and benefited from the contributions of family members as the key partnership in supporting people with intellectual disabilities to have a good life. But we are careful to 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 are promoting inclusion while at the same time are excluding (explicitly or more subtly) the contributions of others.
  42. 42. Independent Living     In-Home Supports Natural Supports Mental Health Supports Life Coaching Paid Employment Live Work     Employment Plan Job Matching & Development Job Coaching Long term maintenance On-going Planning Community Participation     Support to join community activities and venues and travel Support to volunteer within the non-profit sector Support to develop friendships Friday night meet-ups Play Family LiveWorkPlay Supports Supporters     Family Feasts New Year’s Eve Party Auction and Golf Tournament Annual Recognition Banquet
  43. 43. I’ve touched on the live, work, and play aspects of our work, but I wanted to take a moment to mention family, and when I use that term, I do mean the family members of the people we support, but I’m also referencing that shared sense of community that organizations often facilitate. When we started this process of transformation we were very concerned about the impact on the “internal family” of the organization. If, for example, there was no longer the common experience of shared participation in a day program, would people still want to come together. Well, I am happy to report that we’ve been very pleasantly surprised by the results. We are averaging one major event per month with attendance at those events averaging 150 people. That’s because our family is growing – more members of the community at large are joining our internal community and helping to make it stronger – these could be co-workers or neighbours, for example, and of course, members of our volunteer team.
  44. 44. Without a day program as the “tie that binds” we wondered what would happen to the strength of our internal community – while nobody could disagree that we needed to engage the wider community as a key to inclusive outcomes, would people continue to rally with each other? Would individualized support mean the end of collective efforts? This has not happened, and in fact we are averaging one major event per month (150 people or more) 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, volunteer colleagues, and extended networks. This helps build community capacity and is also an encouraging message for newcomers who have yet to see what “social capital” means in a practical sense.
  45. 45. (Medical Model) Social Services Decisions Education Recreation Employment Home Relationships (Community Model) A Transformative Journey Social Change = Paid Staff and/or Family = Day Program/Special Ed = Segregated Program = Sheltered Work = Institutional Setting = Paid Staff and/or Family TRANSFORMATION Decisions Education Recreation Employment Home Relationships = Self-Directed = Inclusive Classrooms (All Ages) = Playing In Community (With Others) = Work/Volunteerism (With Others) = House/Condo/Apartment = Family, Friends, Neighbours Unpaid Support, Paid Support
  46. 46. So what does a neurodiversity approach look like in action? It’s about shifting away from a social services systems approach to a social change approach. This requires acknowledging that the routine status of people with intellectual disabilities in society at present is to be separated from other citizens. In effect, they are a sub-class of citizens with taxpayerfunded mechanisms that make it difficult for them to rise to 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 of people working now where I just didn’t see paid employment in their future. They proved me wrong. Sometimes being wrong is the greatest feeling in the world. When we look at everything in the brown section here, there are a lot of best intentions that historically represented improvements over extreme isolation and neglect. But you know, at conferences like this one 30 years ago, there were conversations about social role valorisation and community inclusion, and moving beyond a systems life, and I think it’s fair to say that our infrastructures remain focused mainly on remediation and accommodation, and are in many ways counter-intuitive to people with intellectual disabilities 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 scarce resources, and the fact is, if we have success with what is going on here in the green section, there is huge potential for cost reduction, and in many cases, we are talking about some individuals that won’t need any systems help at all, which frees up funds to help others, including those with intensive needs that are difficult to serve.
  47. 47. Thank you for choosing Acme Support Services, where we proudly facilitate individual independence through person-centered planning! Now, let me start by outlining the list of fixed choices available to you!
  48. 48. Increasingly agencies who are involved in supporting people with intellectual and developmental disabilities “talk the talk” of person-centered approaches, but in reality, they are mostly just filling out different forms to offer a set of choices of their own creation. Individualized support in pursuit of community inclusion requires transparency about limits and a continuous effort to remove systems barriers to inclusive outcomes. Instead of “We don’t do that here” how about “We’ve never been asked to help with that before, but if we aren’t able to do it, we can offer to do our best to connect you with other resources and help make it happen.”
  49. 49. HOW TO SUPPORT INCREASED SOCIAL CAPITAL FOR PEOPLE WITH INTELLECTUAL DISABILITIES MORE Family Friends Colleagues Co-Workers Classmates Neighbours Spouse ONLY AS NEEDED Workers Staff Doctor Psychologist Psychiatrist Social Worker
  50. 50. Have you ever asked a person with an intellectual disability to list all of the important people in their lives? How many of the 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 there for the average person with an intellectual disability versus other citizens? Four steps to social capital: 1) Identify key areas of interest 2) Find the matching group or community 3) Understand how communities behave 4) Finding a gatekeeper to acceptance.
  51. 51. An institution is any place in which people who have been labeled as having an intellectual disability are isolated, segregated and/or congregated. An institution is any place in which people do not have, or are not allowed to exercise, control over their lives and their day to day decisions. An institution is not defined merely by its size. Task force on De-Institutionalization
  52. 52. Above right, Ian and Warren Murphy (aka the twins) enjoy a beer in their condominium apartment with mom Elaine. Like many parents, Elaine and her husband Jack recognized they could not keep the boys at home forever, but were unsure about other options. Over a period of several years (including a demonstration project) they made the move to living in a home 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 also became lost in the system, living in a large group residence with a tiny footprint of private space. This lasted for about two years during which time Caroline, an active artists, ceased to paint and draw.
  53. 53. LiveWorkPlay has developed excellent partnerships with local non-profit housing providers such as Centretown Citizens Ottawa Corporation where Caroline now has an accessible apartment unit. Her building is comprised of people with all income groups, but it is for anyone, it is not just for people with disabilities or only for people of low income. Her desire to paint and draw has returned, and the latest and greatest news is that Caroline has been dating – for the first time in more than a decade.
  54. 54. Overall, the findings suggest that across datasets, people with IDD experience greater levels of unemployment, underemployment, low wages, and poverty compared to those without disabilities. Beyond the moral and ethical issues involved, how can we continue to fund segregated programs with government funds (tax dollars) when federal and state laws (ADA, IDEA, Rehab Act, and more) mandate non-discrimination, least restrictive environment, and other basis tenets which promote inclusion, equal access, and more? - Kathy Snow, disabilityisnatural.com “I WANT TO WORK”
  55. 55. Again, many of the systems solutions of today came from the best intentions of yesterday and have resulted in the maintenance of barriers to inclusion in the future. Where people with intellectual disabilities are congregated in a work like setting and work for subminimum wage, we need to come up with honest answers to questions like: is sheltered work an accommodation of disability, or is it an unfair assumption about lack of worth of people with disabilities in the labour market and ultimately in society itself. I have used some US references because statistical information available in Ontario and Canada is weak. We have little idea about where people with intellectual disabilities live, how they spend their time, or who is helping them and in what ways.
  56. 56. vs “I WANT TO WORK” “OK, WE’LL HELP YOU!”
  57. 57. Again, many of the systems solutions of today came from the best intentions of yesterday and have resulted in the maintenance of barriers to inclusion in the future. Where people with intellectual disabilities are congregated in a work like setting and work for subminimum wage, we need to come up with honest answers to questions like: is sheltered work an accommodation of disability, or is it an unfair assumption about lack of worth of people with disabilities in the labour 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.” For an individual that states “I want to work” even as we help them improve their chances of being hired, we keep an open mind. For example, the story of Jeremy and Vaughn (coming up). We know dedicate most of our time in employment supports to establishing good relationships with the people we are supporting and with employers so we can be a bridge that connects the two.
  58. 58. We had known Jeremy for only a very short time last year. The opportunity to support him came up because his family was in crisis. Jeremy had never had a paid job before, but he was clear that he wanted to work. As a result of a presentation to a local Rotary club, Vaughn approached us, and in reviewing our list of members looking for work, Jeremy was the best possible fit, so with a number of steps we helped bring the two together - and the rest is history!
  59. 59. “THIS IS TUESDAY NIGHT LEAGUE BOWLING. PLEASE COME BACK ON THURSDAY NIGHT AND SIGN UP FOR SPECIAL NEEDS BOWLING.” BUT I’VE GOT A 180 AVERAGE!
  60. 60. If we can’t even bowl together, is the dream of neurodiversity and an inclusive community realistic? Why is there still so much “special” out there: education, sports, and even recreational bowling? Is there really a justification for segregated bowling leagues, other than a really bad habit that is helping to reinforce ongoing discrimination? Subtle and yet not so subtle discrimination sends important messages about people with intellectual disabilities and where they do and don’t belong.
  61. 61. NO DAY PROGRAM? WHAT WILL THEY DO TO FILL THEIR TIME? Play collage
  62. 62. The reality is, many of our members have developed such busy lives that our staff can’t find time to meet with them to check in! This includes post-secondary education (where we feel we are just getting started in being successful supporters and advocates). It includes a lot of JOINING that which is not segregated, congregated, or clustered. In our experience, not one individual involved with LiveWorkPlay who has been supported to transition from “special” sports, education, recreation, arts, culture, vocation (etc.) has said “I want to go back to the special place.” This doesn’t happen easily. People with intellectual disabilities don’t have a typical experience of simply “signing up” for things in the community and being welcome, respected, and valued. Every day we learn something new and develop our expertise with how to build bridges, develop gatekeepers, and facilitate relationships. And sometimes we don our human rights battle gear and fight discrimination head on. But happily these issues are often requiring of negotiation and diplomacy. The reality is, the coordinator of Special Needs bowling mostly likely believes they are doing a very nice thing. They need help to understand that there are other possibilities.
  63. 63. We cannot solve our problems with the same thinking we used when we created them. All that is valuable in human society depends upon the opportunity for development accorded the individual. Core value: people with intellectual (developmental) disabilities are valuable contributors to community diversity and the human family.
  64. 64. Systems are a reality. They are necessary. But when you find yourself struggling to determine the value of a particular proposal, endeavour, or activity, ask yourself how it supports the development of the individual. We challenge ourselves with this all the time. Sometimes we have to compromise, but being aware that you are compromising is sometimes the best we can do. Instead of throwing up our hands to say “this is all we can do” how about “this is all we can think of for now, but we are going to keep working on it!”
  65. 65. Do staff want to perform like stars? Sure! But we don’t want to be your world. (Dave Hingsburger)
  66. 66. Well-intentioned organizations and individual staff members that see the social capital deficit for people with intellectual disabilities often try to fill that void themselves. This is dangerous and sad. By creating such a complete dependency, the future of the individual is tied almost exclusively to the future of the organization and the paid staff in their lives. So rather than attempting to fill the void ourselves, we seek to act more as a bridge, building connections in neighbourhoods, workplaces, and social relationships. Inviting community members to meet up with LiveWorkPlay members to explore shared interests and develop relationships (which often turn intro friendships) is one of the most important ways that LiveWorkPlay can facilitate (rather than replace) reciprocal relationships in the lives of people with intellectual disabilities.
  67. 67. “Ottawa's Race Weekend (May 28th - 29th) is a popular event each year (http://www.ncm.ca/). Andrea and I are interested in training with a team of LiveWorkPlay members to participate in this fun event - either by walking or jogging the 2K, 5K, 10K, or half marathon.”
  68. 68. While many of our 130 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 was started by volunteers and continues to be lead by them with minimal staff involvement. While some of the original group continue to run and train together (a mix of people who have disabilities and do not have disabilities) others have joined their local Running Room or other clubs and have develop new relationships.
  69. 69. “I never thought from this I’d make such a good friend that I send texts to all day every day!”
  70. 70. Sometimes organizations limit the potential contributions of volunteers by prescribing what their role will be. Volunteers are also a lot of other things – they probably work somewhere and have all sorts of personal and professional connections. With every volunteer that invests in getting to know one of our members (and vice-versa) this opens up a world of opportunities. While it is often assumed that these relationships are largely a one-way benefit, this simply is not the case – neurodiversity is being realized every day through 1:1 relationships of mutual benefit. This is Ellyce and Emily. They started out as shopping buddies and it quickly expanded into a full-fledged friendship, as Ellyce recently gushed about the relationship “I had no idea that from attending a volunteer orientation I’d end up with a friend I text with all day!” Things have advanced to the pinnacle of friendship: Emily is to be a bridesmaid at Ellyce’s upcoming wedding!
  71. 71. What is the story we are telling about the work of human services and developmental services in particular? We have to teach the media that disability as equivalent to pitiable is a way of thinking that has been on its way out since the 1970s. We need to tell stories about how our work helps people become less dependent on systems thanks to the development of relationships that support a fuller life in the community. When we choose to tell stories about the wonderfulness of the segregated environments we have created, we send a dangerous message. Some individuals with intellectual disabilities need intensive systems supports and there may not be an easy way for them to transition to a different way of living. These individuals should not be considered lost and forgotten as within systems environments there is much that can be done to impact quality of life. But for the vast majority of individuals it’s not the case that there are insurmountable barriers to greater participation in the community.
  72. 72. Some of what happened - by trying! 78
  73. 73. We serve about 100 people with intellectual disabilities a year – noting that a few of the people we are supporting reach a point in their lives where they are just plain done with the system – they’ve got a job, a home, and a network of natural supports, rendering agency support redundant, or at least the need is on hold if and until things change. Many of our members choose to keep in touch even though they don’t need much help anymore. These individuals and their family members often become thought leaders that can help us get our message out to internal and external audienes! The only thing that trumps big moments like a person we are supporting getting 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 you anymore.” Shouldn’t that really be our goal – even if we might not always get there? So one test of our outcomes is to ask “Are we reducing or increasing systems dependency?”
  74. 74. What We’ve Learned From Loss The best insurance for the future is a robust network
  75. 75. When Chris Jones lost his mother with little notice and little opportunity for planning, the immediate systems response was to recommend systems solutions. I knew from having the personal experience of Chris living in my own home (during a transitional housing project) that he did not want and would not be successful in a systems environment. But what to do? What happened instead (and we can still hardly believe it ourselves) is the LiveWorkPlay community and our community partners rallied around Chris and we found solutions that were right for him. Chris now has a place to live that he loves, has his own dog-walking business that pays well, and has many friends and hobbies that he enjoys. Rob More was killed tragically in the Ottawa bus-train crash of September 18, 2013. Rob had not been in direct contact with LiveWorkPlay for about 5 years. When his family reached out to us to talk about Rob at his funeral service, we were honoured but baffled. Well, it turned out that by getting support at the right time (as Rob was a young man) for about 5 years was all the lift he needed to launch his adult life – he had gone on to a ten year employment career at IBM and to share a home with his sister. He had a very full life and his parents took comfort that he had been living the life he wanted to live when he passed away.
  76. 76. The Day Program? THAT WAS EASY? A robust network of welcoming people and places that includes a home, a job, friends, and enjoyable things to do in the community? For EACH and EVERY person we support? HARD! But it’s supposed to be about doing what is right, not what is easy…
  77. 77. The reality is, the day program was pretty easy – easy to run, easy to schedule, easy to count – we could send in our stats just by taking x people times x days times x hours a day. Nobody ever asked us if the day program was accomplishing anything 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 because we are contributing in a real way to changing lives and changing our community. The average number of relationships for citizens who do not have a disability = 150 (and very few of them paid). The average number of relationships for citizens who have a disability = 25 (mostly people paid to spend time with them, naming of “best friend” is usually “staff” or “mom”).
  78. 78. http://www.helensandersonassociates.co.uk/
  79. 79. This is a simple and yet highly effective tool for annual reviews with individuals and families, or for any sort of problem solving at all. We used it as a staff team at our 2012 retreat and as individuals and as a collective, we came up with all sorts of great ideas that saved the organization time and money.
  80. 80. http://www.compasspoint.org/nextgenorgs A GREAT BASIS FOR CHALLENGING YOUR ORGANIZATION JUST WHEN YOU MIGHT BE THINKING “WOW, WE ARE AWESOME” COMES THE REALIZATION THAT STANDING STILL ALWAYS RESULTS IN ORGANIZATIONAL DECAY. RENEWAL REQUIRES CONSTANT VIGILANCE AND AN ENERGY FOR SELF-IMPROVEMENT!
  81. 81. The “Next Generation Organizations” can inspire stimulating discussions. This ties in very well with person-centred thinking and the importance of supporting social capital. We used the 9 Key Traits at a staff retreat in 2011 and came up with about a half dozen fundamentally important changes.
  82. 82. http://www.helensandersonassociates.co.uk/
  83. 83. People with intellectual disabilities are often subject to a difficult “double-whammy” with respect to decision-making: groups of professionals are often too busy talking over them, through them, or around them to find out what it is they really want, and secondly, we might expect them to make enormous life decisions around a schedule that is convenient to us, but is ignoring pressures or other issues that make it a really bad time for them.
  84. 84. Progressing Towards the Mission? Vision A Community Where Everyone Belongs Values CORE: People with intellectual disabilities are valuable contributors to the diversity of our community and the human family. LIVE, WORK, PLAY Mission Helping the community welcome people with intellectual disabilities to live, work, and play as valued citizens With respect to:    homes, health care, education, personal dignity, and personal privacy paid work at minimum wage or better, short-term unpaid work, and volunteer positions cultural and spiritual life, sports and recreation, political life, and the full range of human relationship People with intellectual disabilities have the right to the removal of barriers preventing them from experiencing the community on an equal basis with other citizens. Are we progressing towards the mission? Impact Outcomes Increase in levels of social capital # members supported # housing partnerships # total affordable homes # gatekeepers developed # members employed # new employers # employers # gatekeepers developed # Friday night activities # gatekeepers developed # venues # members active in community venues Increased personal income # 1:1 Matches Average Length 1:1 Match # Fri Night Volunteers LIVE # Friendships Impact on employers, community venues, and neighbourhoods Success rates implementing support plans Satisfaction questionnaires Decreased reliance on ODSP Citizenship reviews WORK PLAY RELATIONSHIPS MEMBER SATISFACTION Increase in levels of presence to contribution in community activities
  85. 85. We can all see the writing on the non-profit wall that it’s all about being evidence-based; tracking outcomes and making an impact. This can be seen as a challenge of re-wording our policies, marketing, and flow charts, or perhaps it’s an opportunity to re-examine our practices and make meaningful changes that are better for the people we support and the communities that we should be helping to change for the better.
  86. 86. http://www.helensandersonassociates.co.uk/
  87. 87. I need to use this since it’s in the title! It seems obvious, but people can’t have presence in the community unless they are actually there…but the world can be a lonely place even if we are located right in the middle of a neighborhood. So presence is a starting point. The importance of what we do at LiveWorkPlay is supporting people to progress from presence in the pursuit of their own life goals.
  88. 88. http://www.helensandersonassociates.co.uk/
  89. 89. This is an example of any easy tool that can be used to suggest areas of improvement. LiveWorkPlay was at about a 3 on these two charts and we have worked hard to become about a 4.5 on the appreciation chart and a 5 on the meetings chart. It’s very hard to get to a 5 in any of these areas, and that’s the point. This is not a self-congratulatory exercise. It’s a an improvement exercise.
  90. 90. Sometimes non-profit organizations forget that there is more to partnerships than funding. For example, when the local United Way Ottawa realigned their focus areas to include the employment of people with disabilities, we jumped at the opportunity to work with them to communicate a positive message about people with intellectual disabilities in the workforce. They used their substantial network to leverage all kinds of free public service message space, and in helping deliver the message, we of course received the additional benefit of being seen as leaders in our field. We have experienced a similar outcome since getting involved with our local Rotary clubs and the Rotary at Work initiative.
  91. 91. Opportunities at LiveWorkPlay / Cooking Companion (Downtown/Britannia/Kanata/Orleans/Barrhaven) / Friday Night Fun! / Do you have a hobby or interest you'd like to share? / Movie Companion (Kanata/Orleans/Downtown/Barrhaven/Lincoln Heights) / Like Video Games!? / Wanna shoot some hoops? (Vanier) / Do you love dinner, movies or shopping? / Bowling Companion (Merivale) / Workout Partner (Various locations) / Computer Companion (Lincoln Fields) / Interested in horses? / Walk & Chat (Kanata/Barrhaven/Baseline/Britannia/Orleans) / Calling All Movers and Shakers! / Be an Employment Champion!
  92. 92. The key to these success of course is that we have to ask. The reason volunteers were making a relatively minimal contribution to LiveWorkPlay in the past was not due to a lack of engagement from the community, it had to do with our own failure to ask – and also required that we learn more about HOW to ask. Guess what? Being REALLY SPECIFIC is a great help! Thanks to posting very specific descriptions that include geography and time commitments, we’ve experienced an explosion in volunteerism, and notably, have attracted more males, now up to about 40% when previously it was more like 25%. By being less open-ended in the beginning, first-time volunteers are less concerned about being unable to “do enough” and so they often start out with just a couple of hours a week and then later decide to expand their contribution.
  93. 93. These people are COOL! But does “volunteers” describe them?
  94. 94. From top left to right and down: rocking out at Bluesfest, billiards, volunteering together at the food bank, a pub night, a couple of cool nerds, tennis anyone, marathoners, close friends (soon to be in a wedding party), and a workout buddy. Not a staff member in sight! Our organization made a huge investment in helping create the conditions for these relationships to develop and flourish. But consider that the outcome creates social capital that now exists beyond the confines of our organization. This changes not only the lives of the individuals, but the community as a whole. In the end, inclusive attitudes won’t come from legislation or public service announcements, it will come from bringing people together.
  95. 95. CHANGING PRIORITIES: WHAT OUR MEMBERS WANT
  96. 96. We have an annual review where we ask a lot of questions about changes in our members’ lives. We’ve started tracking this and in 2014 we’ll have our first comparative data. We do know from our 2013 information that interest in spending time with other people is rapidly increasing as a priority. For those who have been living in homes of their own for one year or more (and in particular if they have obtained some level of regular employment) their priorities are clearing shifting to “engagement with others.” And it appears the more they get the more they want. One of the challenges of course is that these encouraging outcomes are also a massive resource challenge – the more our members expand their interests, the more challenging it is to support success in these new community territories. More volunteers please!
  97. 97. facebook.com/liveworkplayfans liveworkplay.ca youtube.com/liveworkplayvideo twitter.com/liveworkplay
  98. 98. Because we have such a strong on-line presence many people are often shocked to find out that we are a relatively small organization. We use Facebook not only as a public networking tool but also for a variety of internal communications strategies. We have focused on Facebook, YouTube, and Twitter as our primary social media channels and are currently growing our LinkedIn presence. Our leadership and entire staff team have an accessible public presence on social media that has contributed to our reputation for transparency and accessibility. It has also ensured that we are attractive to younger volunteers and staff (average age of staff team is 32 and average age of volunteers is in a similar range but also includes many retirees – they like social media too!).
  99. 99. http://www.lapiana.org/strategy/real-time-strategic-planning
  100. 100. Whether trying to help one individual make a shift in their life, or looking to make a bigger change at the organizational or systems level, it can all seem very daunting. But the best way to start is just to start. One small change leads to another. Trying to script out the change in 500 page binder often creates nothing but a paperweight. Explore the benefits of real-time strategic planning (google La Piana RealTime Strategic Planning). This has helped our staff, board, and membership not only to make great decisions but to be comfortable with a process of change that is driven by a response to demonstrated needs that change over time – not by what “the binder” says we are supposed to do next.
  101. 101. I practice what I preach…if you have questions, comments, ideas: http://socialkeenan.com Reach out to me with the method that works best for you!

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