Keynote speech to the Wisconsin Integrated Employment conference, September 19, 2012 in Wisconsin Dells. The focus of the presentation was employment of people with intellectual and developmental disabilities in the context of risk-taking for non-profit organizations.
Embracing Opportunity & Risk: Delivering Supports In & With Our Local Communities
This event sponsored by Pathways to Independence. Partial fundingprovided by the Centers for Medicare and Medicaid Services, MedicaidInfrastructure Grant (MIG) - CFDA No. 93.768, Wisconsin Departmentof Health Services/Pathways to Independence. September 19, 2012 Kalahari Resort, Wisconsin Dells @socialkeenan @liveworkplay
This is neither the exact slides nor the exact notes presented at the conference. Both have been adapted for this online version. In the past I have inserted YouTube videos directly into SlideShare presentations but on this occasion I’ve decided to go with links instead.The term “integrated employment” as used in the title and throughout this presentation was made known to me by conference organizers as the term of preference for this particular audience. At LiveWorkPlay we would simply refer to it as “employment.” Although the presentation was about “integrated employment” it was also intended to be about the importance of risk-taking in the non-profit sector. For more about the risk-taking theme please see my article in Non-Profit Quarterly: http://j.mp/nporisk
In nature, nothing isperfect and everythingis perfect…contorted,bent in weird ways, andtheyre still beautiful. - Alice Walker
“Anyone who has never made a mistake hasnever tried anything new.” ― Albert Einstein “Have no fear of perfection - youll never reach it.” ― Salvador Dalí “Freedom is not worth having if it does not include the freedom to make mistakes.” ― Mahatma Gandhi “Regrets are the natural property of grey hairs.” ― Charles Dickens “Without forgiveness, theres no future.” ― Desmond Tutu
Doing a wrong thing can be really popular. Sheltered workshops are a great example.There is probably a new one being created somewhere right now, although they mightbe describing it as something else, like a “work experience” or a “social enterprise.” Ifthe result is a bunch of people with disabilities working together at less than minimumwage with a bunch of non-disabled supervisors making real wages, I don’t care whatyou call it, it definitely isn’t progress for people with disabilities.The whole idea of the sheltered work environment we created at LiveWorkPlay owedmainly to a lack of belief on the part of the staff, family members, and government thatthe people we support could get and keep jobs. That’s something I can see in hindsight.At the time everyone definitely thought they were rallying around a noble cause.We also enjoyed lots of positive benefits in terms of publicity and control, not tomention funding. Programs and projects are immensely popular with many fundersbecause they allow for the measurement of simple outputs – how many people did youserve over what period of time and at what cost?I could likely recreate and rebrand this project in 2013 and get it funded all over again.But we are now in pursuit of outcomes that have relevance beyond the systems world.Like having a job, an apartment, and friends in the community. What is takes to achievethose outcomes is sometimes difficult to measure and is different for each person. Butnobody said social change was easy. Nobody said pursuing social change within theframework of systems funding and measurement was easy. It isn’t.It’s just the right thing to do.
SMILE stands for Skills & More forIndependent Living and Employment. Its anoutreach program that welcomes people whohave a developmental disability and helpsthem dream up and work towardstheir goals. Ultimately, SMILE is a dailyclient-driven system of supports targeting awide variety of individualized communityliving objectives. – CBC Television, 2001It still sounds good! Unfortunately, it was largely untrue!“SMILE was started to confront the uniquebarriers faced by persons with developmental Change is bothdisabilities who are pursuing a more an exciting andindependent life in the community. Skills and a humbling processabilities must be supported by a level of self-reliance and self-confidence that can only - Me, 2012come from authentic experience.” - Me, 2001
The same could be said for our day program which had the snappy acronym “SMILE”Change leadership is both exciting and humbling because people usually want anexplanation for the change, and you can’t really explain that result of the change will bean improvement, without people figuring out that what you were doing before waslacking in some way.Moving away from our sheltered work and day program was risky in a lot of ways, and Ican tell you as the face of the organization that telling everyone one day how we hadthe greatest programs in the city, and then the next day explaining why we werelooking to close them, was not entirely comfortable!But with a lot of determination from our board of directors and staff, a lot ofconsultation and dialogue with individuals, families, and other stakeholders, we did it!
LiveWorkPlay Helping the community welcome people with intellectual disabilities to live, work, and play as valued citizens. Controversial? (Adopted 2011)Core value: people with intellectual (developmental) disabilities arevaluable contributors to community diversity and the human family.
I wanted to share this information because I realize that here in 2012 there is a lot ofpressure for change, much of which is coming from places that could have to domainly with financial stress, legislative pressures, or other external issues.The story of our transformation at LiveWorkPlay really had more to do with internalquestioning. The place we’ve come to is about “welcoming ideology” which meansthat we - along with thousands of allies that are outside of the service deliverysystem -are co-constructing a community that welcomes people with intellectualdisabilities to live, work, and play alongside other citizens.Back in the late 1990s when we first achieved meaningful financial resources, wefound ourselves drifting into offering a lot of the same types of programs as otheragencies. Our good reputation owed mainly to trying very hard to do what I nowbelieve to be a “wrong thing” but during this rapid phase of organizationaldevelopment, it was difficult to see.As our eyes opened – due in part to making an effort to challenge ourselves byattending conferences and workshops outside of our own jurisdiction – werecognized that LiveWorkPlay was not created to be “just another service provider”no matter how great our quality of work might be at running programs.And so began the transformation.
(Medical Model) (Community Model) Social Services A Transformative Journey Social ChangeDecisions = Paid Staff and/or FamilyEducation = Day Program/Special EdRecreation = Segregated ProgramEmployment = Sheltered WorkHome = Institutional SettingRelationships = Paid Staff and/or Family TRANSFORMATIONDecisions = Self-DirectedEducation = Inclusive Classrooms (All Ages)Recreation = Playing In Community (With Others)Employment = Work/Volunteerism (With Others)Home = House/Condo/ApartmentRelationships = Family, Friends, Neighbours Unpaid Support, Paid Support
So what does this welcoming ideology look like in action? It’s about shifting away from a socialservices systems approach to a social change approach.To understand “welcoming” as an ideology requires acknowledging that the routine status ofpeople with intellectual disabilities in society at present is to be separated from other citizens.In effect, they are a sub-class of citizens with taxpayer-funded mechanisms that make itdifficult 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 behonest, there are large numbers of people working now where I just didn’t see paidemployment in their future. They proved me wrong. Sometimes being wrong is the greatestfeeling in the world.When we look at everything in the brown section here, there are a lot of best intentions thathistorically represented improvements over extreme isolation and neglect. But you know, atconferences like this one 30 years ago, there were conversations about social role valorisationand community inclusion, and moving beyond a systems life, and I think it’s fair to say that inmany ways the very organizations that should be leading this change are slowing the pacethrough various forms of resistance.I want to emphasize that for me this is not primarily about financial efficiencies, and yet, atthe same time, here we are in these days of scarce resources, and the fact is, if we havesuccess with what is going on here in the green section of the chart, there is huge potential forcost reduction. In many cases, we are talking about some individuals that won’t need anysystems help at all, which frees up funds to help others, including those with intensive needsthat are difficult to serve.
One of the consequences to the medical model for people working in any fieldrelated to intellectual disabilities is that it seems we are forever doomed to ascarcity conversation. I don’t know about all of you, but when I start to get worriedabout burnout, it’s usually because I’ve gotten caught up in in some sort ofconversation about scarcity, and the conclusion of those conversations is always thatthere is nothing to be done without additional resources.But the thing is, if one the outcomes of our supports and services is to segregatecitizens with intellectual disabilities from others, then no matter how much moneywe have, it’s never going to result in people with intellectual disabilities achievingfull citizenship and social inclusion!If we shift to a community model, or social model, there is limitless capacity forchange, because the community already has all the answers, and they just need ourhelp to make it happen. There are apartment buildings to live in. There areworkplaces to work in. There are community centres to enjoy sports and culture.The challenge before us therefore should be how to include people with intellectualdisabilities in that abundance that is the community, rather than how to maintain amedical model of disability that will always suffer from financial scarcity and is noteven designed to realize inclusive outcomes.
Overall, the findings suggest thatacross datasets, people with IDDexperience greater levels ofunemployment, underemployment,low wages, and poverty compared tothose without disabilities.Beyond the moral and ethical issuesinvolved, how can we continue to fundsegregated programs with governmentfunds (tax dollars) when federal andstate laws (ADA, IDEA, Rehab Act, andmore) mandate non-discrimination,least restrictive environment, and otherbasis tenets which promote inclusion,equal access, and more? - Kathy Snow, disabilityisnatural.com
Again, many of the systems solutions of today came from the best intentions ofyesterday and have resulted in the maintenance of barriers to inclusion for today andinto the future.Wherever people with intellectual disabilities are congregated in a work like settingfor 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 aboutlack of worth of people with disabilities in the labour market and ultimately insociety itself? Expansion of community-based non-work services continues to compete with integrated employment, despite evidence that these services are loosely defined and do not consistently achieve their stated goals of community membership (Sulewski, Butterworth, & Gilmore, 2008; Sulewski, 2010)
When we consider social capital for peoplewith disabilities, we must recognize the void.We know that people with disabilities still areseparated from the greater community andmostly involved in special programs or servicesdesigned for them. In these realities, the majoroutlet for social capital is found only within theborders of the special programs.The relationships thatconstitute the socialcapital of many peoplewith disabilities is limited When we find ourto other people with similarities, the negative power ofdisabilities and paid staff. differences is reduced andThe narrowness of this reality leaves a may well become a positive.significant void. - Professor Al Condeluci, Community & Social Capital
“Assumed Norms”One of the consequences of supporting people to have a systems life insteadof a community life is that we deprive them of social capital when peoplewith intellectual disabilities need social capital as much or more than anyoneelse in society.I think it’s fair to say we do some pretty weird things in this sector…we worryabout people with intellectual disabilities being isolated, and yet a lot of whatwe do promotes various forms of isolation. We worry about economicdisadvantage, but a lot of what we do limits economic potential.We’ve invested billions of dollars in creating an “assumed norm” that peoplewith intellectual disabilities live their lives separately from others. It doesn’treally matter what percentage of that effort came with the best of intentions.We have to stop.
This book was not specificallyabout the isolation of peoplewith disabilities, but I wanted totell a quick story about bowling.Because if we can’t bowltogether, why would we besuccessful working together?
“Assumed Norms” (continued)I think one of the responsibilities we have to own up to is that the general population is goingto take cues from us (“the professionals”) when it comes to their attitudes about people withdisabilities. If what they see is that the organizations and people who are supposed to be theexperts are focused on keeping people with disabilities separate from other citizens, then thatwill become their assumed norm – that they should do the same!This young man I’ve known for quite a long time happens to be an excellent bowler and hewanted to join a bowling league. Not a special needs bowling league. Just a bowling league.So one of our Community Connector staff supports him to research the various leagues, hemakes sure the timing works, he saves his money, and he goes to registration night. The ladyat the registration table takes some cues from the way Johnny talks, figures out he has somesort of a disability, and with a really nice smile that could only come from a true belief inhelpfulness, she explains that special needs bowling registration is on Thursday night.As Johnny struggles to explain that he wants Tuesday night bowling, the woman looks likeshe’s about to have a complete nervous breakdown, and our staff member is forced tointervene. Registration lady ends up in complete distress, and now has no idea what is theright thing to do. Were we able to find Johnny a non-special bowling league where he waswelcomed? Yes. So that’s progress, at least it is possible. But where did registration ladydevelop that particular world view? Was she born believing that a person with an intellectualdisability should not bowl with other citizens? I don’t think so. I think she was taught. And Ithink the people and organizations who are paid to support people with intellectualdisabilities are mostly to blame.
“How to do integrated employment?”1) Believe 2) Learn 3) Coalition of the willing
Listen, I carry a lot of guilt about my own lack of belief in people that limited theiremployment potential. I think I am getting close to eradicating that negative tendency, butfrom time to time, I will have a thought like “there’s no way Jimmy is ever going to get ajob.” But nowadays right after I have that thought, I can quickly flip it to something like“there’s no way in a city of thousands of employers that the right job and the rightworkplace is not out there.”Finding it in a timely fashion may not always be possible. But it’s better to try.Network with others who share your belief. One of the best deals ever is connecting withan agency in a different region who has had success with an employer that is also set up inyour region. The dude with the hamburger is Ion Aimers, he was the founder of the burgerbistros like the one where Melissa works. When one of his franchise owners left Ottawa tostart up some franchises in Kingston, which is about 2 hours from Ottawa, she asked us tofind a local agency in Kingston who could help her hire people with intellectual disabilities.This is how we change the world. It starts with coalitions of the willing.
“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) 29
We cannot claim to have person-centred services forpeople with intellectual disabilities if we aren’t actuallytreating them like persons. When we separate andsegregate and limit life for people with intellectualdisabilities we are not offering them the same access tothe community as other citizens. It’s really that simple. Itdoesn’t mean we pretend something like integratedemployment is easy. It means we make the collectivedecision that it is the right thing to do, and we go after it,measuring and reporting on our progress.
When Dan Heath and his brother Chip startedtheir research for their best-seller Switch: Howto Change Things When Change Is Hard , thetwo of the most common comments theyheard about change were:“Change is hard.” “I hate change.” 31
“Agencies trying to create and sustain person-centred services based in the community are spectacularly more successful at it than those agencies whobelieve it is impossible and refuse to try.” So why do sheltered work and day programs continue and perhaps even grow when the logic of inclusion is difficult to deny? In other words, why is “trying” not always happening? 32
There are a lot of different reasons actually, and a lot of them are not about ideology orphilosophy, they are structural and organizational, and they are not insignificant.Committing to a change like a full-blown commitment to integrated employment is going toimpact on budgets and careers from front line to head office.But what is this all about? Is this about a system that provides us with jobs, or is this abouthelping people with intellectual disabilities take their place as valued and included citizens,and a system that is supposed to make that happen? 33
There’s not much that trumps big momentslike a person we are supporting getting theirfirst job or first apartment, except for maybethe moment when they tell us “It’s beennice, but I’m not sure I need you anymore.”Shouldn’t that really be our goal – even ifwe might not always get there?
More Albert Einstein…We cannot solve our problems with the samethinking we used when we created them.All that is valuable in human society dependsupon the opportunity for developmentaccorded the individual.Core value: people with intellectual (developmental) disabilities arevaluable contributors to community diversity and the human family. “How to do integrated employment?” 1) Believe 2) Learn 3) Coalition of the willing
Systems are a reality. They are necessary. But whenyou find yourself struggling to determine the valueof a particular proposal, endeavour, or activity, askyourself how it supports the development of theindividual. Ask yourself if the intended outcome isabout seeing the person as a valuable contributorto their community.I challenge myself with this all the time. Sometimeswe have to compromise, but being aware that youare compromising – and being transparent aboutthat with the person and their supporters - issometimes the best we can do.
I shared with you Michael Kendrick’s quote about trying as a criticalstep towards succeeding.Helping people find and keep a job is truly an addictive process. I’vegone from worrying about all the reasons why people we supportwon’t be successful in employment to celebrating as the employmentrate for our members has gone from 20% to 30% to about 50%. Wouldwe like it to be 100%? Of course! But this is progress and to me that iswhat human services is all about. Not perfection. Progress towardsmeaningful life-changing outcomes, not progress towards runningcontrollable program outputs.If this is not currently part of what you do, how about just taking amoment to think of just ONE PERSON you know who is in a shelteredwork program – and by all means choose someone that you think hasinterest and potential for employment success – and have aconversation about how you might support them with employment. Ifthis is not something you have been doing, it doesn’t matter. That wasyesterday. Tomorrow you can start trying. You will love it.