Stu the Cockatoo is New at the Zoo: Life is Not a Program! Kingstone & Wellar, APSE Conference 2014
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After steadily accumulating site-based infrastructure and resources for more than ten years, this charitable organization based in Ottawa, Canada, made a radical shift in thinking and actions. Starting in 2008 and over a period of three years, the agency completed a full transition away from day programs and other sheltered activities, finding new energy and synergies through partnership with hundreds of individuals and partners in the community. For individuals with intellectual disabilities and their families, in addition to the enjoyment of concrete results that range from employment to the development of new friendships, they report dramatic new feelings of hope and possibility, finding new energy through escape from ongoing dialogues about systems limitations and scarcity. Informed by collaboration with other agencies and thought leaders that have embraced person-centred and social capital concepts and models, LiveWorkPlay now seeks to encourage and support other agencies and jurisdictions to pursue similar transitions.
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Stu the Cockatoo is New at the Zoo: Life is Not a Program! Kingstone & Wellar, APSE Conference 2014
- 1. After steadily accumulating site-based infrastructure and resources for more than ten years, this charitable organization based in Ottawa, Canada, made a radical shift in thinking and actions. Starting in 2008 and over a period of three years, the agency completed a full transition away from day programs and other sheltered activities, finding new energy and synergies through partnership with hundreds of individuals and partners in the community. For individuals with intellectual disabilities and their families, in addition to the enjoyment of concrete results that range from employment to the development of new friendships, they report dramatic new feelings of hope and possibility, finding new energy through escape from ongoing dialogues about systems limitations and scarcity. Informed by collaboration with other agencies and thought leaders that have embraced person-centered and social capital concepts and models, LiveWorkPlay now seeks to encourage and support other agencies and jurisdictions to pursue similar transitions. No need to take notes about what is on the slides, you will be able to download the show http://presentations.liveworkplay.ca/
- 2. Is this really how people get a job?
- 3. We think getting and keeping a job has more to do with relationships…
- 5. WHY did you decide to start a charitable organization for people with intellectual disabilities????
- 6. When we get innovative in human services, sometimes we end up with the equivalent of a car with square wheels!
- 8. What Did You Think Of Our Video?
- 9. Popularity is not a significant or critical measurement. We are called to a higher level of accountability.
- 11. So why should people with intellectual disabilities all live together? (Adapted from hope-house.org)
- 12. (Inspired by Dave Hingsburger) Does our staff team want to perform like stars? Sure! But we don’t want to be your world.
- 13. If you have an intellectual disability, it’s not such a good thing to be SPECIAL SPECIAL PEOPLE Stigmatized. Pitiable. SPECIAL PROGRAMS Limited. Dream-Crushing. SPECIAL PLACES Isolated. Segregated.
- 14. Fear not, it’s the new millennium! New catchphrases are here! • Person-Centred Planning • Individualized Supports Sometimes we are the doctors of hypocrisy…
- 15. 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!
- 16. Why is the pace of change so slow? Everyone seems to agree that it’s all about inclusion, and yet group homes and day programs and sheltered workshop scenarios continue to dominate our field.
- 18. The systemic approach to supporting an included life…
- 19. We built it and they came….
- 22. It All Starts with Person-Centered Thinking & Planning
- 23. What’s Working What’s Not Working
- 24. Person Centered Planning:Tools What does your week look like? Monday Tuesday Wednesday Thursday Friday Saturday Sunday What’s working well? What’s not working? What would you like to change or add? Tell meabout...
- 25. Some other examples: person-centered thinking tools we use
- 26. One page profiles for all!
- 28. Action Plan
- 29. Staff Matching
- 30. It’s not enough to be IN the community, it’s about being OF the community!
- 31. The reality is, developmental services agencies tend to be not very skilled or practiced in the art or science of relationships. Traditionally, their talent lies in creating and managing programs and infrastructure. We need a different theory to get us where we need to be as facilitators of relationships for the people we are trusted and honoured with supporting.
- 32. Community Inclusion It’s All About Relationships! Asdfasdf ads From Al Condeluci’s Blackboard
- 33. Phil: Home Sweet Home
- 34. 20 years ago: “Matt will never walk or talk” 2 years ago: “Matt will never have paid employment” Want to bet against Matt again?
- 35. “THIS IS TUESDAY NIGHT LEAGUE BOWLING. PLEASE COME BACK ON THURSDAY NIGHT AND SIGN UP FOR SPECIAL NEEDS BOWLING.”
- 37. 1:1 Matches
- 38. 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!
- 39. Person-Centered Teams MEMBERS BOARD Executive Staff Director of Operations Executive Staff Marketing & Communications 1 Employment Supports (2) Community Connectors (3) Living Supports (2) Coordinator of Volunteers and Support Networks (1) 100 Volunteers 1 Supports Coordinator (1) 2 LIVEWORKPLAY ORGANIZATIONAL CHART 2014 100+ Volunteers
- 40. RISK: STATEMENT OF INTENT The people supported by LiveWorkPlay tell us that they want to be involved in the community, access opportunities, and to achieve their goals like everyone else in society. With an ordinary life comes risk, and sometimes accidents may happen. The people we support, as with most people, will not always choose to live in a totally healthy and safe way. We will support people to manage the risks involved in exercising control over their own lives, through offering advice and guidance. In managing risk, we will take sensible precautions to reduce the risk of harm to staff, the people we support and anyone else who may be affected by our work. Those precautions will effectively balance what is important to the people we support with what is important for the people we support. Risk assessments will not be used to curtail or ban activity. Sensible risk management is not about generating useless paperwork mountains. Risk assessments should address real risk, in other words risk which actually exists. Written assessments should contain information essential for maintaining safety. As part of our commitment to enabling people we support to take planned risks, LiveWorkPlay as an employer will always support staff who have used sound judgement and taken sensible precautions, even if these have not been sufficient to avert an incident.
- 41. Celebrate!
- 42. Trying to change the world? Don’t forget to tell others about it!
- 44. 44 Instead of investing in segregation from life, we are investing in life.
- 45. Let us stop being innovative with people’s lives by turning them into special people in special programs in special places. Let us stop building the infrastructure of segregation. Let us start building the richness of an ordinary life.
- 46. Because an ordinary life has extraordinary features like these: Apartment. Job. Teammates. Friends. Spouse. Thank You!
- 47. Please don’t reinvent the wheel! Instead, please visit: buildingsocialcapital.org helensandersonassociates.co.uk liveworkplay.ca
Notes de l'éditeur
- Take a turn each talking about our reasons for getting involved – Keenan has his story about encountering people with intellectual disabilities for the first time at age 21. Julie could talk about her years at Christie Lake Camp, meeting young people who were used to being written off. How within just a few weeks each summer she saw the transformation, that it wasn’t that the person was different, but rather what was around them made it possible for strengths based in hope and confidence to emerge.
- LiveWorkPlay’s SMILE program was considered innovative..... Innovation can be defined as a new method, idea, product. Please watch this video “flash from the past” building community, developing self esteem, personal responsibility, and healthy peer relationships----while images of people we supported in computer lab, playing table hockey in a sheltered environment – how is saying we are empowering people including contributing members of society- We were so happy with this psa at the time, and not once did we stop and think how the words and images in this commercial are leading to anything ....by being sequestred in specialized programs... How contributing money to facilities, materials and staff essential basic operations- how does money going into facilities which keeps people out of the community help with aforementioned contributing to the community as citizens? How does paying staff to facilitate sing alongs, segregated photo clubs, and special community outings help people learn personal responsibility ? – are these the words and concepts that lead to a full life – of well-being, of engagement, relationships, meaning, and accomplishment---so what was the tipping point that led up to change? When we realized that 1) The majority of people attending were not moving on to community activities as we hoped and that the people coming were largely being forced to attend by family or popping in and out and then lying to their families they were having a great day at the program. There were a small number of people who seemingly enjoyed coming but what was their point of reference? They were making the best of it, but yearning for more.
- What happened with LiveWorkPlay is a story that we see again in social movements, the very act of organizing takes things in unintended directions. As we began to 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. Funders LIKE programs and projects. Organizations need revenues to sustain their existence so they can pursue their missions. The result is that compromises are often made, and mission drift is the result. 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 had attempts at bribery from some family members who wanted their son or daughter to be a part of it. It was also attractive to media who could pop by just about anytime for a feel-good story. And so with that sort of popularity and external we lost focus. Instead of contributing to an included life in the community for people with intellectual disabilities we became instead “operators of one of the most popular day programs” - which is not even close to the original intent of those who built the organization. We likely could have kept along that path, and today have an even bigger day program for which we’d win awards, get wonderful media coverage, and would be a lesser resource challenge.
- 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, family members, 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 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 real jobs in order to come back! Happily, this is never going to happen. In fact, in recent years we have helped many individuals leave sheltered workshops operated by other agencies. Even those who have experienced challenges with real employment have been unequivocal in their desire to “never go back.”
- 1.What we have learned is that often in our field innovative most often leads to another form of taking special people and developing another special program or special place which just increases the gap and does not lead to a fuller more diverse community. Sure there were positive things that happened and the outcomes could be summarized as follows: people attending this innovative program were busy, got out of the house everyday, and usually got some form of social interaction (but not always positive), and there was “choice” or what we now understand -the illusion of choice- you see one of the reasons our program was thought to be innovative was the members planned and chose what sessions would be offered at the day program. There were some changes in positive emotions among participants, but also a lot of interventions required to stop world war three erupting, over time engagement in day program activities decreased, once people had tried out all sessions and there was no more innovative ideas (and we thought we have lots of ideas- from the ordinary to the creative- cooking, photography, singing, drama, current events, consumer affairs, sexuality, self-esteem, out and about, fitness, computers, things to do, volunteer work, and started a few social enterprises: a lunch run and delivery service, community cafe, woodshop and thrift store.... But of course looking back now how could we compete with what can be done in the community- full of opportunity and not a lot of limits. Which leads us to opportunities to experience and develop relationships- sure people hung out when they were at the program, but there were very limited relationships that continued outside the program – two reasons – because they did not like each other and or two- cause they did not have support to initiative, develop and maintain reciprocal relationships, in terms of helping people lead a meaningful life, we never asked, but heard a lot of dreams that were going unrealized, and accomplishment... Sure there were accomplishments but not the accomplishments that many people wanted or valued. They were hungry to be a part of the community on the inside, not on the outside to move out like their brother or sister, to have a job, to contribute to the community.. To have power in their own lives, a life that they determined...- so all of these resources were going into maintaining not so very good outcomes for people supported ---we thought we could do better and realized that The path to inclusion is not through exclusion- special people, special places and special programs do not lead to social inclusion they lead to continued exclusion.
- We have all made the assumption at one time or another that if we just get people with disabilities together they will develop friendships and not experience loneliness. Because all people with intellectual disabilities will just automatically like each other and become best friends just by being in the same room or living together in the same home. Not to say this does not happen, but more often than not people supported learn one way relationships with paid staff. We need to actively support individuals to connect with others with and without disabilities people to develop diverse reciprocal unpaid relationships. When we transitioned from offering the day program to the community development approach we were most worried about the loss of social connection and relationships that we assumed were a built in part of the program. Well were we wrong. We have looked at the difference in social connections people had in the day program vs the social connections they have now and the difference is amazing yet heart wrenching at the same time. By helping people meet other people in the community- neighbours, employees, volunteers, team mates, and through more intentional initiatives like 1:1 matches and Friday night meet ups, for the most part people’s social relationships have increased by XXX% And staff still play a role, but we are not fulfilling intimate roles related to friendship… rather we are social conveners and friendship coaches rather than the friend or companion. We know now that we can not solve loneliness by forcing people to spend time together- Relationships and social connections are a large part of being included. If the there is no significant support within our system allocated to support people to meet all kinds of people and develop diverse unpaid reciprocal relationships then what are we doing? When people are scared have know nothing else or have experienced rejection in the mainstream it is often easier to choose the security of what you know best – which for many is sheltered environments, segregated classes, or special recreation programs.
- 3. Increasingly agencies who are involved in supporting people with intellectual and developmental disabilities “talk the talk” of choice under the auspices of using person-centered approaches- hey that is why our day program was thought to be innovative. But in reality, we were using colourful forms, an energetic and interactive process, but all offering a set of choices of our own creation with significant limits. Individualized support in pursuit of community inclusion requires transparency about limits and a continuous effort to remove systems barriers to inclusive outcomes. In the days of the day program we often found ourselves saying“We don’t do that here” and now we find ourselves saying “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.” We often find ourselves answering the question “ but my daughter or son likes the program he is happy there” Our experience which is supported by research, all be it limited, is shows that if people are supported to live and participate in the mainstream community they are happier, healthier, and more satisfied thatn those that live a sheltered segregated systems life. Research also shows that it is next to impossible to make a true choice when a person has not experiencing any other options. We thought we had a person centred and directed day program, but realized this was not person centered and was not leading to outcomes of a full and included life in the community. Participating in mainstream community can be scary and overwhelming for many, and this is why we focused on baby steps but also as important providing support to individuals and families when we encountered failure- the importance of building a culture that celebrates and supports failure and successes, building resilience and to keep on trying until we find the right combination of relationships, accomplishment, and activities that are engaging and meaningful.
- Why is the pace of change so slow? Everyone seems to agree that it’s all about inclusion, and yet group homes and day programs and sheltered workshop scenarios continue to dominate our field.
- 4. We are trained to keep people healthy and safe. As a result (system) train people that we will take care of them and through good intentions we have trained people we support to be helpless, dependent and vulnerable and by continuing to only support people in sheltered environments creates a self-fulfilling prophecy of helplessness, dependency, and vulnerability. We need to understand the research and the evidence. People who are supported in segregated environments with limited social circles with limited power of their own daily lives are the most vulnerable and most likely to experience abuse. Therefore to counter this we need to help people be in control over their lives, develop diverse reciprocal relationships with unpaid people, and participate and contribute to mainstream community activities. The research and evidence shows that people who live in homes of their own with people they choose, have diverse social relationships, participate in mainstream activities including employment, volunteer work, and leisure and recreation experience higher levels of self-determination and quality of life- both physcial health and overall health. We need to start young! And even with someone that heavily relies on system support, look for small openings and use the existing resources and re-orient them bit by bit. Re think- what is our role? What is the impact of our support? If we are not in the business of making people vulnerable, helpless and dependent then we need to rethink what we are doing.
- Systems are the biggest barrier to a life of community and inclusion. It’s another case of getting a little too innovative, and then blaming the victims for the poor results. Day programs and sheltered workshops are like bikes with triangle wheels – we tell ourselves and we tell people with intellectual disabilities that they can peddle this bike into a life in the community, and then when it doesn’t work, it’s a self-fulfilling prophecy – the person clearly isn’t ready, since they can’t get the bike to work. What we need to do is start them out on round wheels in the first place. They might fall down a few times, but with some support, they will keep getting back up, and sooner than later they will actually get somewhere. We were interested in learning the recent ruling in Rhode Island---a prime example of how there is more and more public acknowledgement that directing people with intellectual disabilities into sheltered workshops, employment training programs and DAY PROGRAMS and these programs and supports get in the way of developing a full life in community. We have seen this first hand watching the flourishing of members who were supported in our day program and who are now been supported by with the same resources (and often less over time) to enjoy a much more positive and rich meaningful life full of relationships, engagement and accomplishment. No one would say that life is perfect, but isn’t that the case for us all living ordinary lives? Starting in 2008, LiveWorkPlay embarked on a journey of “de-programming”by making a shift from congregated programs to authentic community-based, person-centered, and assets-focused thinking and processes. Beyond exciting outcomes such as first homes, first jobs, and first experiences engaging in the community with other citizens, with respect to the experience of an included life, the impact is all about the development of reciprocal relationships and interdependence (social capital).
- Keenan – last slide. What happened with LiveWorkPlay is a story that we see again in social movements, the very act of organizing takes things in unintended directions. As we began to 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. Funders LIKE programs and projects. Organizations need revenues to sustain their existence so they can pursue their missions. The result is that compromises are often made, and mission drift is the result. 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 had attempts at bribery from some family members who wanted their son or daughter to be a part of it. It was also attractive to media who could pop by just about anytime for a feel-good story. And so with that sort of popularity and external we lost focus. Instead of contributing to an included life in the community for people with intellectual disabilities we became instead “operators of one of the most popular day programs” - which is not even close to the original intent of those who built the organization. We likely could have kept along that path, and today have an even bigger day program for which we’d win awards, get wonderful media coverage, and would be a lesser resource challenge.
- LiveWorkPlay believes that people with intellectual disabilities are not broken- we believe that people in the broader community have not had the chance to welcome and include people with intellectual disabilities and this has led to the gap that many of us experience in our communities- where special people are expected to go to special places and special programs. As some of you heard in the opening session, this has not always been the practice at LiveWorkPlay: we always believed people were not broken but this was not in evidence in our practice- we thought the way to help people to be included was to help them gain and practice skills in a sheltered environment – independent living skills, work preparation, recreation, and relationships) and when those skills were mastered then people with intellectual disabilities were ready to join the community. We have now found out first hand that this is not an effective path to community inclusion and that the work to be done lies in and with the community. I will share with you in this presentation how we have connected with members of the community to widen the welcome and help nurture a more inclusive experience for everyone.
- As you might of heard in the general presentation over the last 3 years LiveWorkPlay used program resources which was supporting a day program and realigned these same resources to support people on an individual basis in community activities of their choosing. Our staff team participated in a professional development and training with Helen Sanderson and Associates (HSA) to learn about person centered thinking practices and as a result we have integrated the tools and practices throughout all levels of the organization not just when planning with individuals we support. This has made all the difference. The keys to person centered organizations include having person centred teams, positive and productive team meetings, a different approach to choice and risk, provision of staff coaching in a person centred way, and a strong focus on community connections. I will start by sharing how we cultivate community connections that bring forward opportunities for community inclusion. It starts with a really getting to know people and what they want... Here is where we start...
- A planning meeting in which we use a variety of tools and questions to get to know and understand what is currently working for the person, what is important to the person, what is not working, what they want to change, and who and how we can support them.
- Most of these tools and templates have been developed by Helen Sanderson and Associates (HSA) and can be accessed at http://www.helensandersonassociates.co.uk/. There is also thinkandplan.com which offers these templates on line that you can fill out and save.
- One page profile Important 2 and Important 4 Decision Making Donut What’s Working Not Working
- Important to and important for
- As we get to know the individual we start learning about them, and create a one page profile that captures what is important to the person, what others like and admire about the person, and the best way to support the person. We also create these profiles for staff and volunteers and it a great way to introduce people together before they meet including employers!
- Another great tool is the decision making profile. and staff match.
- Near the end of the process which can take any where from 1 to three meetings we come up with an initial action plan, who is going to do what. Even though this is just a snap shot in time, it is a starting point and we expect the plan will change over time, very fluid…and will be formally revisited every 6 months and informally changes more often than not.
- If this person is coming to us for the first time or has been matched with a staff member and is concerned about the connection, we follow and staff matching process to find the best match between people supported and staff. Personalities, age, gender, interests and approach are all key factors that we take into consideration when matching support staff with members.
- Once we have developed a plan we have a variety of staff roles that would help with initiating the plan. Whether it is a community connector, job developer, life coach, or our volunteer match maker they all follow the above process more or less: 1)Develop person-centred plans based on interests, abilities, and possibilities 2) Identify sub-communities for making needed connections; 3) Develop an understanding of sub-community operations and expectations 4) Develop individual and organizational inclusion gatekeepers for ongoing success.
- Phil and his family came to LiveWorkPLay after may bad experiences with other service providers. SO called person centered plans were done, yet he ended up in situation in which Phil was abused, taken advantaged of, and not livng the life he wanted. LiveWorkPlay spend a long time getting to know phil and understanding where he and his family had experienced and focused Phil’s strengths and the barriers that were getting in his way to lead the life he wanted. Within 1 year we had helped Phil to move into his own apartment, get out of the sheltered workshop and participate in ordinary community activities of his choice.
- Starting young! Connecting with youth who are still in high school has been a key learning of ours. Helping youth get summer jobs with the hopes of leading to employment upon high school graduation is one way to level the playing field.
- Form Special Programs with special people where Chris experienced bullying and isolation as well as seen as a problem by coaches and organizers to Team Doug, an ordinary soccer team who not only welcomes but celebrates Chris as a valued member of the team- he is the best long striker on the team, and team members always invite him for beers win or lose and offer him to car pool. Very different from the experience in the special program where he was not valued, and organizers were doing everything to keep him out.
- Explain Friday Night Meet ups-
- Explain 1:1 matches
- So these are some success stories and examples of the steps we follow to help people. For this to really work within our organization we also made a lot of changes to our organizational structures and supports. Here is how some of this looks at an organizational level. Non hierchical, shared leadership, person centered, power as closest to the person, and this ripples throughout the organization.
- How we view and support risk as an organization has changed a lot…
- To inspire and recruit new members of the community and to recognize and reenergize members, families, current volunteers, community partners and staff LiveWorkPlay hosts 4 community celebrations per year.
- Another way we reach out and share success stories is social media--
- 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 25 (mostly people paid to spend time with them, naming of “best friend” is usually “staff” or “mom”). The Day Program? THAT WAS EASY! But now…a robust network of welcoming people and places that includes a home, a job, friends, and enjoyable things to do in the community with many diverse relationships? For EACH and EVERY person we support? HARD! But it’s supposed to be about doing what is right, not what is easy…
- 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. 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?” We are now seen again as innovative . We have gone from measuring attendance, number of hours spent at the day program to now measuring number of people living in homes of their own, number of people in jobs, participating in ordinary community activities, volunteer work, and changes in number and quality of reciprocal unpaid relationships- it is all about tracking and measuring flourishing in people we support.