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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.




                    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 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
It still sounds good! Unfortunately, it was largely untrue!
“SMILE was started to confront the unique
barriers faced by persons with developmental      Change is both
disabilities who are pursuing a more              an exciting and
independent life in the community. Skills and
                                                  a humbling process
abilities must be supported by a level of self-
reliance and self-confidence that can only             - Me, 2012
come 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 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.
                 Controversial?         (Adopted 2011)


Core value: people with intellectual (developmental) disabilities are
valuable 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 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)                                  (Community Model)
 Social Services       A Transformative Journey    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

                      TRANSFORMATION
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
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                               When we find our
to other people with                                        similarities, the
                                                          negative power of
disabilities and paid staff.                          differences is reduced and
The 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 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.
Embracing Opportunity & Risk: Delivering Supports In & With Our Local Communities
(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)
                                          29
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?     32
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
Some of what happened - by trying!




                                     34
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.

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Embracing Opportunity & Risk: Delivering Supports In & With Our Local Communities

  • 1. 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. September 19, 2012 Kalahari Resort, Wisconsin Dells @socialkeenan @liveworkplay
  • 2. 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
  • 3. In nature, nothing is perfect and everything is perfect…contorted, bent in weird ways, and they're still beautiful. - Alice Walker
  • 4. “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
  • 7. Key Question: A Good Program = A Good Life?
  • 8. Doing A Wrong Thing Can Be Immensely Popular
  • 9. 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.
  • 10. 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 It still sounds good! Unfortunately, it was largely untrue! “SMILE was started to confront the unique barriers faced by persons with developmental Change is both disabilities who are pursuing a more an exciting and independent life in the community. Skills and a humbling process abilities must be supported by a level of self- reliance and self-confidence that can only - Me, 2012 come from authentic experience.” - Me, 2001
  • 11. 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!
  • 12. 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 are valuable contributors to community diversity and the human family.
  • 13. 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.
  • 14. (Medical Model) (Community Model) Social Services A Transformative Journey 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 TRANSFORMATION 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
  • 15. 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.
  • 16. SCARCITY ABUNDANCE
  • 17. 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.
  • 18. 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
  • 19. 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)
  • 20. 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 When we find our to other people with similarities, the negative power of disabilities and paid staff. differences is reduced and The narrowness of this reality leaves a may well become a positive. significant void. - Professor Al Condeluci, Community & Social Capital
  • 21. “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.
  • 22. 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?
  • 23. “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.
  • 25. (Video available from http://j.mp/melissauw
  • 26. (Video available from http://j.mp/jeremyuw
  • 27. “How to do integrated employment?” 1) Believe 2) Learn 3) Coalition of the willing
  • 28. 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.
  • 29. “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
  • 30. 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.
  • 31. 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
  • 32. “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? 32
  • 33. 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! 34
  • 35. 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?
  • 36. 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
  • 37. 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.
  • 38. Video available from http://j.mp/rotaryatwork
  • 40. 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.