September 19, 2012 Kalahari Resort, Wisconsin Dells

@socialkeenan @liveworkplay

This event sponsored by Pathways to Independence. Partial funding provided by the Centers for Medicare and Medicaid Services, Medicaid Infrastructure Grant (MIG) - CFDA No. 93.768, Wisconsin Department of Health Services/Pathways to Independence.

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 is perfect and everything is perfect…contorted, bent in weird ways, and they're still beautiful.

- Alice Walker

“Anyone who has never made a mistake has never tried anything new.” ― Albert Einstein

“Have no fear of perfection - you'll 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, there's no future.” ― Desmond Tutu

(Discussion of similarities and differences)

http://j.mp/ablastfrompast

Key Question: A Good Program = A Good Life?

Doing A Wrong Thing Can Be Immensely Popular

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 might be describing it as something else, like a “work experience” or a “social enterprise.” If the result is a bunch of people with disabilities working together at less than minimum wage with a bunch of non-disabled supervisors making real wages, I don’t care what you call it, it definitely isn’t progress for people with disabilities.

The whole idea of the sheltered work environment we created at LiveWorkPlay owed mainly to a lack of belief on the part of the staff, family members, and government that the 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 to mention funding. Programs and projects are immensely popular with many funders because they allow for the measurement of simple outputs – how many people did you serve 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 achieve those outcomes is sometimes difficult to measure and is different for each person. But nobody said social change was easy. Nobody said pursuing social change within the framework of systems funding and measurement was easy. It isn’t.

It’s just the right thing to do.

SMILE stands for Skills & More for Independent Living and Employment. It's an outreach program that welcomes people who have a developmental disability and helps them dream up and work towards their goals. Ultimately, SMILE is a daily client-driven system of supports targeting a wide variety of individualized community living objectives. – CBC Television, 2001 “SMILE was started to confront the unique barriers faced by persons with developmental disabilities who are pursuing a more independent life in the community. Skills and abilities must be supported by a level of self-reliance and self-confidence that can only come from authentic experience.”

- Me, 2001

Change is both an exciting and a humbling process

- Me, 2012

It still sounds good! Unfortunately, it was largely untrue!

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 an explanation for the change, and you can’t really explain that result of the change will be an improvement, without people figuring out that what you were doing before was lacking in some way. Moving away from our sheltered work and day program was risky in a lot of ways, and I can tell you as the face of the organization that telling everyone one day how we had the greatest programs in the city, and then the next day explaining why we were looking to close them, was not entirely comfortable! But with a lot of determination from our board of directors and staff, a lot of consultation 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.

(Adopted 2011)

Core value: people with intellectual (developmental) disabilities are valuable contributors to community diversity and the human family.

Controversial?

I wanted to share this information because I realize that here in 2012 there is a lot of pressure for change, much of which is coming from places that could have to do mainly with financial stress, legislative pressures, or other external issues. The story of our transformation at LiveWorkPlay really had more to do with internal questioning. The place we’ve come to is about “welcoming ideology” which means that we - along with thousands of allies that are outside of the service delivery system -are co-constructing a community that welcomes people with intellectual disabilities to live, work, and play alongside other citizens. Back in the late 1990s when we first achieved meaningful financial resources, we found ourselves drifting into offering a lot of the same types of programs as other agencies. Our good reputation owed mainly to trying very hard to do what I now believe to be a “wrong thing” but during this rapid phase of organizational development, it was difficult to see. As our eyes opened – due in part to making an effort to challenge ourselves by attending conferences and workshops outside of our own jurisdiction – we recognized 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)

Social Services (Community Model)

Social Change

Decisions = Paid Staff and/or Family Education = Day Program/Special Ed Recreation = Segregated Program Employment = Sheltered Work Home = Institutional Setting Relationships = Paid Staff and/or Family

Decisions = Self-Directed Education = Inclusive Classrooms (All Ages) Recreation = Playing In Community (With Others) Employment = Work/Volunteerism (With Others) Home = House/Condo/Apartment Relationships = Family, Friends, Neighbours Unpaid Support, Paid Support

TRANSFORMATION

A Transformative Journey

So what does this welcoming ideology look like in action? It’s about shifting away from a social services systems approach to a social change approach.

To understand “welcoming” as an ideology 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 taxpayer-funded 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 in many ways the very organizations that should be leading this change are slowing the pace through various forms of resistance.

I want to emphasize that for me this is not primarily about financial efficiencies, 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 of the chart, there is huge potential for cost reduction. 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.

SCARCITY ABUNDANCE

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.

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

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 for today and into the future. Wherever people with intellectual disabilities are congregated in a work like setting 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? 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 people with disabilities, we must recognize the void. We know that people with disabilities still are separated from the greater community and mostly involved in special programs or services designed for them. In these realities, the major outlet for social capital is found only within the borders of the special programs.

The relationships that constitute the social capital of many people with disabilities is limited to other people with disabilities and paid staff.

The narrowness of this reality leaves a significant void. - Professor Al Condeluci, Community & Social Capital

When we find our similarities, the

negative power of differences is reduced and

may well become a positive.

“Assumed Norms” One of the consequences of supporting people to have a systems life instead of a community life is that we deprive them of social capital when people with intellectual disabilities need social capital as much or more than anyone else in society. I think it’s fair to say we do some pretty weird things in this sector…we worry about people with intellectual disabilities being isolated, and yet a lot of what we do promotes various forms of isolation. We worry about economic disadvantage, but a lot of what we do limits economic potential. We’ve invested billions of dollars in creating an “assumed norm” that people with intellectual disabilities live their lives separately from others. It doesn’t really matter what percentage of that effort came with the best of intentions. We have to stop.

This book was not specifically about the isolation of people with disabilities, but I wanted to tell a quick story about bowling. Because if we can’t bowl together, why would we be successful working together?

“Assumed Norms” (continued)

I think one of the responsibilities we have to own up to is that the general population is going to take cues from us (“the professionals”) when it comes to their attitudes about people with disabilities. If what they see is that the organizations and people who are supposed to be the experts are focused on keeping people with disabilities separate from other citizens, then that will 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 he wanted 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, he makes sure the timing works, he saves his money, and he goes to registration night. The lady at the registration table takes some cues from the way Johnny talks, figures out he has some sort of a disability, and with a really nice smile that could only come from a true belief in helpfulness, 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 like she’s about to have a complete nervous breakdown, and our staff member is forced to intervene. Registration lady ends up in complete distress, and now has no idea what is the right thing to do. Were we able to find Johnny a non-special bowling league where he was welcomed? Yes. So that’s progress, at least it is possible. But where did registration lady develop that particular world view? Was she born believing that a person with an intellectual disability should not bowl with other citizens? I don’t think so. I think she was taught. And I think the people and organizations who are paid to support people with intellectual disabilities are mostly to blame.

(Video available from http://j.mp/melissauw

(Video available from http://j.mp/jeremyuw

“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 their employment potential. I think I am getting close to eradicating that negative tendency, but from time to time, I will have a thought like “there’s no way Jimmy is ever going to get a job.” 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 right workplace 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 with an agency in a different region who has had success with an employer that is also set up in your region. The dude with the hamburger is Ion Aimers, he was the founder of the burger bistros like the one where Melissa works. When one of his franchise owners left Ottawa to start up some franchises in Kingston, which is about 2 hours from Ottawa, she asked us to find 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)

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We cannot claim to have person-centred services for people with intellectual disabilities if we aren’t actually treating them like persons. When we separate and segregate and limit life for people with intellectual disabilities we are not offering them the same access to the community as other citizens. It’s really that simple. It doesn’t mean we pretend something like integrated employment is easy. It means we make the collective decision 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 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.” 31

“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.”

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?

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There are a lot of different reasons actually, and a lot of them are not about ideology or philosophy, they are structural and organizational, and they are not insignificant. Committing to a change like a full-blown commitment to integrated employment is going to impact 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 about helping people with intellectual disabilities take their place as valued and included citizens, and a system that is supposed to make that happen?

33

34

Some of what happened - by trying!

There’s not much that trumps big moments like a person we are supporting getting their first job or first apartment, except for maybe 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?

More Albert Einstein…

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.

“How to do integrated employment?”

1) Believe 2) Learn 3) Coalition of the willing

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. Ask yourself if the intended outcome is about seeing the person as a valuable contributor to their community. I challenge myself with this all the time. Sometimes we have to compromise, but being aware that you are compromising – and being transparent about that with the person and their supporters - is sometimes the best we can do.

Video available from http://j.mp/rotaryatwork

@socialkeenan @liveworkplay

socialkeenan.com liveworkplay.ca

I shared with you Michael Kendrick’s quote about trying as a critical step towards succeeding.

Helping people find and keep a job is truly an addictive process. I’ve gone from worrying about all the reasons why people we support won’t be successful in employment to celebrating as the employment rate for our members has gone from 20% to 30% to about 50%. Would we like it to be 100%? Of course! But this is progress and to me that is what human services is all about. Not perfection. Progress towards meaningful life-changing outcomes, not progress towards running controllable program outputs.

If this is not currently part of what you do, how about just taking a moment to think of just ONE PERSON you know who is in a sheltered work program – and by all means choose someone that you think has interest and potential for employment success – and have a conversation about how you might support them with employment. If this is not something you have been doing, it doesn’t matter. That was yesterday. Tomorrow you can start trying. You will love it.