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

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

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

AGENDA
Introduction: Key Concepts: Neurodiversity, Possibilities, Social Capital

Background: A Little Bit About Me (Why Listen?)
The LiveWorkPlay Journey: The Early Years
The Program Years
De-Programming (Why Change?)
Being The Change: Person-Centered & Community-Based
Living Supports: Enjoying a home of one’s own – lessons and tips.
Work Supports: Employment is not the only thing…but it can be a big thing!

Play Supports: Seeing the people and possibilities in the world around us.
Involved Community: Volunteers and partners (couldn’t do it without them).
Conclusion: Questions & Follow-Up

Here is my plan for the session. I’ve never done
this exact presentation before and a webinar is
a bit of a different environment for me, and I
realize some of you may need to come and go
over the next two hours, so this is an overview
of what you can expect. If you are involved in
one particular type of support it might be
tempting to tune in just for that topic, but my
caution on that would be that in the case of
most of the individuals we support, our
engagement with them is often quite broad
and it all works together.

It always seems impossible
until it is done.
Nelson Mandela

The secret of change is to focus all
of your energy not on fighting the
old, but on building the new.
Socrates

In supporting people with intellectual
disabilities we often become consumed with
assumptions of what CANNOT be done instead
of assuming that it WILL HAPPEN, if only we try,
learn, and try again. When we think of a vision
like “a community where all citizens belong” it
can seem rather daunting and sad that systemic
discrimination and public attitudes continue to
get in the way. But in the context of broad
social progress such as the negotiated ending
of apartheid in South Africa, isn’t the belief
that people with intellectual disabilities should
be living, working, and playing in the
community wholly realistic and attainable?

NEURODIVERSITY
The acceptance and embrace of people with cognitive
differences is an idea whose time has come. The
sudden prominence of this term is an indication of
how rapidly our field is evolving and how
dramatically parents and practitioners are shaping
the public dialogue. What these change agents have
in common is a determination to open minds long
closed to the potentials and possibilities of people
once dismissed because of their differentness.

Remediating  Accommodating  Valuing

NEURODIVERSITY was the theme of the 2013 YAI
International Conference: “The acceptance and embrace of

people with cognitive differences is an idea whose time has come.
The sudden prominence of this term is an indication of how rapidly
our field is evolving and how dramatically parents and practitioners
are shaping the public dialogue. What these change agents have in
common is a determination to open minds long closed to the
potentials and possibilities of people once dismissed because of their
differentness.”
Historically the approach to supporting people with intellectual
disabilities has focused on “remediation” of the disability – in
essence, helping to “fix” the individual so they can be successful.
Over time some responsibility for reducing exclusion came to be
situated with the community, expressed as “accommodation” or
“toleration” whereby discrimination becomes legislatively and
attitudinally less acceptable. In current times, progress is increasingly
viewed in the light of whether or not people with intellectual
disabilities are VALUED for their contribution to the community. In
other words, that some of their “differences” as a group and as
individuals contribute welcomed forms of diversity.

buildingsocialcapital.org
tlccanada.groupsite.com

Everything I have to say here today stems from two
fundamental beliefs and concepts: social capital and
person-centred thinking. You’ll see references to Helen
Sanderson and Al Condeluci later in this presentation,
Helen is a key player in the Learning Community for
Person-Centred Practices, and Al has a leadership role
with the Interdependence Network. I am not sure how
frequently these two concepts are combined, but to me
it is obvious than anyone in human services (as an
individual or as an organization) should be grounded in
person-centred thinking and planning, and secondly
that if we believe in the social inclusion for people with
intellectual disabilities, this is only going to take place
once people with intellectual disabilities and other
people in the community are connected through a wide
variety of relationships.

Huronia Regional Centre 1876-2009
Community Living Founded 1953
Ontario Commits To Closures 1987
Social Inclusion of Persons Act 2008
POST-INSTITUTION DEVELOPMENTAL SERVICES PARADIGM
LIFELONG SEGREGATION LOCATED “IN THE COMMUNITY”
DAY PROGRAM/SHELTERED WORKSHOP | GROUP HOME | SPECIAL SOCIAL PROGRAMMING
DECISIONS: SYSTEMS-DIRECTED and/or STAFF-DIRECTED and/or FAMILY DIRECTED

NEW DEVELOPMENTAL SERVICES PARADIGM:
TRUE “COMMUNITY MODEL” FEATURING WHAT NON-DISABLED CITIZENS EXPECT
POST-SECONDARY EDUCATION | EMPLOYMENT | HOME | SOCIAL LIFE | CITIZENSHIP | RELATIONSHIPS
DECISIONS: PERSON-DIRECTED, SUPPORTED by PAID PERSONS and/or FAMILY and/or PERSONAL NETWORKS

It is important to understand the evolution of human services and in particular the approach
to people with intellectual disabilities. For the sake of time, and because it’s convenient to
align it with my own journey in this field, I’m going to start my discussion about
transformation in the middle of the 1990s. By this time the Government of Ontario was a
decade into their commitment to closing the province’s three mass institutions: Huronia,
Rideau Regional, and Southwestern Regional. But starting in the 1950s there was already a
shift towards the post-institution paradigm, which seeks to geographically locate people
with intellectual disabilities, but only in limited ways does it pursue or achieve inclusion in
the community. By the late 80s and the early 90s a groundswell of voices is calling for
changes to the segregation paradigm. People with intellectual disabilities (represented
through formal movements such as People First), their family members, educators,
researchers, policymakers, and certain leaders within the professional developmental
services sector are pointing out that it’s very life-limiting to channel people into a life of
segregation. It’s important to note that the key challenge here was not so much based on
issues with the quality of the programs, but rather with the harsh reality that this system
was not even trying to help people enjoy a full life in the community. Its focus was to
provide a life in a parallel society. The rationale for this includes many well-intentioned
ideas common to any “medical model” of human services. In essence, the act of being born
with an intellectual disability is seen as a “problem” that creates a person as vulnerable and
incapable, and therefore access to and participation in a parallel social structure within the
community was the right thing to do.

Concepts like the dignity of risk and social role valorization combined with
longstanding movements for civil rights and the right to self-determination fuelled a
new way of thinking: that having an intellectual disability is not a problem. Being
denied a life in the community due to barriers created by that community is the
problem to be solved, and we should be focusing our energy and resources on
minimizing and removing those barriers. In 2006 the Ontario government after some
2 years of preparation releases Opportunities and Action: Transforming Supports in
Ontario for People who have a Developmental Disability. There was remarkable
clarity to this document, as an expression of public policy: we are moving beyond
segregated models because people with intellectual disabilities have the same rights
to a full life in the community as anyone else, and our system of supports and
services needs to change to support community-based inclusive outcomes. Which
brings us back to LiveWorkPlay: formally launched in 1997 after about three years of
community consultation, we embraced the new paradigm, accepting that while we
did not have many of the answers about how to achieve it, we believed it was the
right thing to do. We took part in government consultations in the early years of the
new millennium with great enthusiasm, as well as some skepticism. When
Opportunities and Action was released, it was timed almost perfectly with the
annual LiveWorkPlay Visioning Day. I began reading the document and I was elated.
The language was almost identical to our own. It was unequivocal. It was, to a great
degree, close to being everything we’d hoped for. Of course, I don’t have to tell this
audience that a policy document is not legislation. It doesn’t reorganize
bureaucracies, generate revenues, or channel resources.

Helping the community welcome people with intellectual
disabilities to live, work, and play as valued citizens

Through a process of slow but steady growth, LiveWorkPlay now has 12
full-time staff, more than 140 volunteers, and an annual budget of over
$1 million dollars. In a typical year less than 60% of LiveWorkPlay funds
coming from government sources. 100% of the annualized government
funding we do receive comes from the Ontario Ministry of Community
and Social Services, with whom we established a relationship for the
first time in 2001. What we do is often described as “innovative” and
this is usually intended in a flattering way, but internally we look at a lot
of what we do as trying to free people with intellectual disabilities and
their families from the many systemic “innovations” that have served to
separate them from life in the community. Our role is to work with the
community to not only support inclusion, but to go beyond: beyond
tolerance, and beyond accommodation, to a place where we embrace
diversity by understanding and valuing what people with intellectual
disabilities have to offer. This is described by some as the movement for
NEURODIVERSITY and although the term itself has not caught on
everywhere, the concept and its spirit is certainly one way of
understanding our ultimate goal at LiveWorkPlay – that one day we and
all agencies involved in supporting the inclusion of people with
intellectual disabilities will be completely unnecessary – that current
assumptions about their lives will be turned upside down, such that
their rights and their value as full community members will be the
common paradigm.

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

We’ll start near the end then go back to the
beginning. During the transition away from our
day program structure, we worked
simultaneously on updating our guiding
statements to more properly reflect on our
work and its intentions. Note in particular that
our mission is “helping the community” this is
of critical importance – yes, we help people
with intellectual disabilities with strategies for
having greater success with others in the
community, but we see the primary
responsibility for reducing and eradicating the
marginalization of people with intellectual
disabilities as a role for the entire community.

Our values statements are designed to align
with the United Nations Convention on the
Rights of Persons with Disabilities. These
simple but powerful statements mean that a
person with an intellectual disability has the
right to experience (and the support to
experience) the world on an equal basis with
others. Not “separate but equal” but rather
“included and equal.”

A little bit about Keenan
2013

19981998

2007

Many of you listening today may have a very personal reason for choosing to work in this field,
such as a family member or a friend with an intellectual disability that you knew growing up, or
maybe like me it was a bit more random. I’m not someone that had any experience or
understanding about intellectual disabilities until I was a university student in my 20s and I
took a part time job with specialized recreation program here in Ottawa. I later worked as a
Teaching Assistant in a Special Education classroom where I developed some close bonds with
individuals and their families, and also worked for them as a Special Services at Home worker. I
went to Teacher’s College and continued my involvement with many of those individuals and
families, and it is at this time that along that with some other young adults doing similar work,
the beginnings of what would become LiveWorkPlay started to take shape. In addition to
hosting meetings and helping make connections between individuals and families, we also
started to educate ourselves about the developmental services system and wanted to
contribute to positive change. It is also during this time that I met Julie Kingstone, with whom I
formally co-founded LiveWorkPlay in 1995. In 1997 we left our “regular jobs” – mine as a
Project Manager in the IT sector, and Julie as a therapist in palliative care at Bruyere – and
decided to make LiveWorkPlay a full-time vocation. The work of a non-profit start-up brings
long hours and so to make things easier, Julie and I decided to get married in 2001. There’s not
much we won’t try if we think it will help the organization and especially people with
intellectual disabilities and their families. For example, in 2007 we purchased a home with an
apartment in the basement and for three years we hosted people with intellectual disabilities
who wanted the opportunity to practice living on their own with an eye to moving to
apartments in the community. In 2013 we tried out for Amazing Race Canada with the hope of
having the opportunity to champion our cause to a national audience, we did not make it to
the final round but we had fun trying. Because of LiveWorkPlay I’ve been exposed to so many
amazing people and situations – everything from capsizing a kayak in the ocean off of Punta
Cana to promoting the employment of people with disabilities as a Focus Area Champion for
United Way Ottawa.

http://j.mp/ablastfrompast

Please watch this video “flash from the past”
and tell us what you think of this LiveWorkPlay
public service announcement from about 8
years ago.

What Did You Think Of Our Video?

As you can see, most everything we were happily promoting in this
video supports segregation and does not facilitate many actual
transitions to life in the community. This was not intentional.
Sometimes the very act of organizing takes things in unintended
directions. As we began to grow the organization and acquire
resources, we built up infrastructures and developed relationships
with funders and eventually found ourselves replicating a lot of the
same structures that we were supposed to be avoiding. This first
took shape with the creation of a day program, which had the snappy
acronym “SMILE” and the equally snappy full name Skills and More
for Independent Living and Employment. I want to emphasize that
SMILE was extremely popular. People wanted IN to SMILE so badly
that we endured a combination of threats and attempts at bribery
from family members who wanted their son or daughter to be a part
of it. And so with that sort of external validation it’s only natural that
one feels a sense of pride and so without really noticing, our identity
had essentially become “operators of one of the most popular day
programs.” We likely could have kept along that path and today have
an even bigger and even better day program for which we’d win
awards, get wonderful media coverage, and most likely enjoy
additional financial success.

Doing A Wrong Thing Can
Be Immensely Popular

Doing the wrong thing can be really popular!
The whole idea of the sheltered work
environment we created was really a lack of
belief that the people we support could get and
keep jobs. We also enjoyed lots of positive
benefits in terms of publicity and control, not
to mention funding – we could likely recreate
and rebrand this project in 2013 and get it
funded all over again. Of course, we’d have to
ask our members to quit their lives and come
back to the sheltered workshop or day
program. That’s not going to happen!

These ideas are mostly from the 1960s and 19070s so why do day programs and
group homes and sheltered workshops persist as the dominant model of service?
Aside from the obvious barrier that big systems have a huge amount of inertia, the
programmatic model also offers the appearance of safety, security, and
sustainability. It’s not that we don’t all need systems from time to time – the
challenge with respect to people with intellectual disabilities is that they can spend
their whole lives in the systems world, and it’s a self-fulfilling prophecy – if we deem
them too vulnerable to be a part of the community, that’s exactly what will happen.
One of the consequences to the medical model for people working in any field
related to intellectual disabilities is that it seems we are forever doomed to a scarcity
conversation. I don’t know about all of you, but when I start to get worried about
burnout, it’s usually because I’ve gotten caught up in in some sort of conversation
about scarcity, and the conclusion of those conversations is always that there is
nothing to be done without additional resources. But the thing is, if one the
outcomes of our supports and services is to segregate citizens with intellectual
disabilities from others, then no matter how much money we have, it’s never going
to result in people with intellectual disabilities achieving full citizenship and social
inclusion. If we shift to a community model, or social model, there is limitless
capacity for change, because the community already has all the answers, and they
just need our help to make it happen. There are apartment buildings to live in. There
are workplaces to work in. There are community centres to enjoy sports and culture.
The challenge before us therefore should be how to include people with intellectual
disabilities in that abundance that is the community, rather than how to maintain a
medical model of disability that will always suffer from financial scarcity and is not
even designed to realize inclusive outcomes.

It’s time for a story to help us enter into the discussion about WHY we decided to
make a dramatic shift from a program model to a social change model. This is Phil.
Phil is not great at reading or writing, and his verbal communication is difficult to
describe. Some people say he reminds them of a fast-talking Robin Williams. If you
know and respect Phil, you see his communication as very rich and you see Phil as
fully capable of communicating his wants and needs. Phil and his parents got told
“never” about a lot of the possibilities discussed for his future. But Phil has gone on
to live in his own apartment, shop for his own groceries, play on a community
soccer team, and get himself around the city to work out with friends at the YMCA
or go out for a night at the pub. After Phil moved in to his own apartment he relied
on his parents to do his shopping, and they asked a Community Connector (a
LiveWorkPlay staff member who helps people make connections in the community
to enjoy sports, hobbies, courses, clubs, and more) to see if Phil could do his own
shopping. It turned out Phil had some bad memories about trying to do his own
shopping in grocery stores. One challenge seemed to be the idea that the store
employees or customers might get mad at him for being too slow or saying things
they didn’t understand. So, after some preparatory work, Phil was introduced to the
customer service staff who assured him that he was a welcome and respected
customer. Recently Phil realized another of his personal goals: to host a party in his
apartment. He did the shopping (top left) and like any of us, was very proud about
celebrating this important life passage of having friends over for food and drinks for
the first time. Phil has also made other connections such as his evolving friendship
with Catherine (pictured left of Sass Jordan and Phil!). Initially introduced by
LiveWorkPlay to explore a shared interested in reading (Phil wanted to do more
reading and Catherine likes to read) their relationship has grown – Phil recently
participated in a fundraising event through an invitation from Catherine, and he was
a huge asset, heralded for generating significantly increased donations!

Social Services/Medical
Approach

Social Change/Community
Approach

Not about fixing people with
intellectual disabilities so
they can be more normal
and fit in with others

Exclusion is everyone’s issue
and as a community we must
all work together to be
welcoming and inclusive
We have learned to appreciate that
people considered “different” often
bring important contributions to society
(e.g. racial differences) and there is lots
of work in progress (e.g. sexuality).
Neurodiversity is at a very preliminary
stage. How many people honestly
believe that people with intellectual
disabilities truly BELONG (and will take
action to back up that thought?).

The emerging story of Phil the citizen helps
remind me of the dangers of medical model
thinking – most of the systems response to Phil
over the years has been to contain, control, and
protect him. With person-centred support and
a focus on building his social capital, Phil is
clearly much happier and much more excited
for the future. Instead of always feeling like a
“problem” he has many more people in his life
that respect, appreciate, and value him.

Prison of Protection
Protect from
Sexual Information

Vulnerable
Protect from
Relationships

Abuse information:
Dick Sobsey
(Google him)

Protect from
Decision-Making

Person
Protect from
Society

Adapted from:

David Hingsburger
(Google him)

Here we see the Prison of Protection (I first heard about this from
Dave Hingsburger) which one could view as a guide for how to
construct a vulnerable person – don’t tell them about sex, protect
them from romantic relationships, make sure they rely on others to
make decisions, and make sure they are afraid of strangers. That’s a
great way to create victims, and the system is doing a great job of it.
Professor Dick Sobsey at the University of Alberta is in my opinion
the world’s leading expert on the mistreatment of people with
disabilities. He has been trying for decades to draw attention to the
elevated rates of abuse for people with intellectual disabilities, which
is 8-10x higher than the average citizen. The issue of decisions is
particularly important, and this is a real barrier to full citizenship. We
need to find a way that a person with an intellectual disability who
has their own apartment and a paid job doesn’t get turned away
when they try to open a bank account because they aren’t
competent to understand the small print – or like the rest of us, they
don’t have the skills to fake their competence. The United Nations
Declaration on the Rights of Persons with Disabilities, which Canada
has signed and ratified, proposes that we should be developing a
method of supported decision-making, whereby a person can have a
legally recognized system of getting help with their decisions without
giving up the right to be in charge of those decisions and have them
respected before the law.

“Some things have to be believed to be seen.”
― Madeleine L'Engle (A Wrinkle In Time)

One of the challenges with making the shift from a
program or social services approach to a social
change or community-based approach is that
investing in the community can result in much
better returns, but they are also are less secure, at
least in the short term. The day program or
sheltered workshop or group home or segregated
recreation program is always “there” (or so it
seems, but sometimes they close, move, or
otherwise don’t work out). Helping people believe
in what is possible requires sharing the
experiences of others and bringing families
together for unbiased dialogue. The security
offered to those who have broad professional and
personal networks is much richer and more longterm than what systems can provide.

When Dan Heath and his brother Chip started
their research for their best-seller Switch: How
to Change Things When Change Is Hard , the
two of the most common comments they
heard about change were:

“Change is hard.”
“I hate change.”
38

There is a certain six letter word that has the power to both
inspire and frighten. Sometimes it does both at the same
time. Yes, C-H-A-N-GE. Change! Two years ago I had the
opportunity to hear Dan Heath speak at a United Way
Ottawa event. He’s one of the authors of the popular book
Switch: How to Change Things When Change Is Hard. When
Dan and his brother Chip started their research on change,
the two comments they heard from people most often were:
"Change is hard.“ "People hate change." What they found
was that even when the logical side of people’s brains
recognize the need for change, that doesn’t mean the
emotional side is ready to come along. But when both line
up, then people perceive change as positive. We should be
open as individuals and organizations that change can be
threatening – individuals and families often view change in
much the same way. Community life is messy, and so
support to help a person live their life should look pretty
messy too! Systems can be tidy, like files in a drawer. It’s a
new type of experience to receive supports and services that
have a deliberate goal of being less than tidy.

“Agencies trying to create and
sustain person-centred services
based in the community
are spectacularly more successful
at it than those agencies who believe
it is impossible and refuse to try.”
(Modified quote from Dr. Michael Kendrick)
40

There are countless reasons for not trying to create social change, at
the individual, organizational, or systems level. Which makes for a
self-fulfilling prophecy that change is too difficult. At LiveWorkPlay
we expect to fail and all it means to us is we haven’t yet found the
solution. This is a critical aspect of staff training in a person-centred
environment – since the possibilities for what people want out of life
are literally endless, the answers don’t come out of a binder – there
is a lot of listening, researching, networking, experimentation, and
trial and error required. Individuals and family members need to
have realistic expectations – for example, reminding people that
agencies don’t create employment, employers create employment –
so it often takes time to find the right employer for developing a
relationship that could make for the right job in the right place at the
right time. In the meantime there are often opportunities that can be
developed more quickly, such as pursuing hobbies, volunteerism, or
educational opportunities. Sitting and waiting for change is very
difficult for anyone – it is important to help the individual and their
family see that work is being done even if the outcomes aren’t yet
the end result they are hoping for.

LiveWorkPlay is not a “family organization” but
has always recognized and benefited from the
contributions of family members as the key
partnership in supporting people with
intellectual disabilities to have a good life. But
we are careful to make sure that we do not
overstate the relationship to mean that other
citizens are not welcomed as contributors,
problem-solvers, and leaders of the inclusion
movement. There is often a disconnect
between organizations that are promoting
inclusion while at the same time are excluding
(explicitly or more subtly) the contributions of
others.

Independent Living





In-Home Supports
Natural Supports
Mental Health Supports
Life Coaching

Paid Employment

Live

Work






Employment Plan
Job Matching & Development
Job Coaching
Long term maintenance

On-going
Planning

Community Participation





Support to join community
activities and venues and travel
Support to volunteer within the
non-profit sector
Support to develop friendships
Friday night meet-ups

Play

Family

LiveWorkPlay Supports

Supporters





Family Feasts
New Year’s Eve Party
Auction and Golf Tournament
Annual Recognition Banquet

I’ve touched on the live, work, and play aspects of our work,
but I wanted to take a moment to mention family, and when
I use that term, I do mean the family members of the people
we support, but I’m also referencing that shared sense of
community that organizations often facilitate. When we
started this process of transformation we were very
concerned about the impact on the “internal family” of the
organization. If, for example, there was no longer the
common experience of shared participation in a day
program, would people still want to come together. Well, I
am happy to report that we’ve been very pleasantly
surprised by the results. We are averaging one major event
per month with attendance at those events averaging 150
people. That’s because our family is growing – more
members of the community at large are joining our internal
community and helping to make it stronger – these could be
co-workers or neighbours, for example, and of course,
members of our volunteer team.

Without a day program as the “tie that binds” we
wondered what would happen to the strength of our
internal community – while nobody could disagree that
we needed to engage the wider community as a key to
inclusive outcomes, would people continue to rally with
each other? Would individualized support mean the end
of collective efforts? This has not happened, and in fact
we are averaging one major event per month (150
people or more) mostly of the community-building
variety, where people gather to share a meal and
stories. The growth is not from our members and their
family, the growth is from other people in the
community who have joined in – like co-workers and
employers, volunteer colleagues, and extended
networks. This helps build community capacity and is
also an encouraging message for newcomers who have
yet to see what “social capital” means in a practical
sense.

(Medical Model)

Social Services
Decisions
Education
Recreation
Employment
Home
Relationships

(Community Model)
A Transformative Journey

Social Change

= Paid Staff and/or Family
= Day Program/Special Ed
= Segregated Program
= Sheltered Work
= Institutional Setting
= Paid Staff and/or Family

TRANSFORMATION
Decisions
Education
Recreation
Employment
Home
Relationships

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

So what does a neurodiversity approach look like in action? It’s about
shifting away from a social services systems approach to a social change
approach. This requires acknowledging that the routine status of people
with intellectual disabilities in society at present is to be separated from
other citizens. In effect, they are a sub-class of citizens with taxpayerfunded mechanisms that make it difficult for them to rise to full citizenship.
I think some of the most surprising progress would be in the area of
employment. I have to be honest, there are large numbers of people
working now where I just didn’t see paid employment in their future. They
proved me wrong. Sometimes being wrong is the greatest feeling in the
world. When we look at everything in the brown section here, there are a
lot of best intentions that historically represented improvements over
extreme isolation and neglect. But you know, at conferences like this one 30
years ago, there were conversations about social role valorisation and
community inclusion, and moving beyond a systems life, and I think it’s fair
to say that our infrastructures remain focused mainly on remediation and
accommodation, and are in many ways counter-intuitive to people with
intellectual disabilities living as fully valued citizens. How can exclusive
environments hope to achieve a culture of neurodiversity? I want to
emphasize that for me this is not about saving money, and yet, at the same
time, here we are in these days of scarce resources, and the fact is, if we
have success with what is going on here in the green section, there is huge
potential for cost reduction, and in many cases, we are talking about some
individuals that won’t need any systems help at all, which frees up funds to
help others, including those with intensive needs that are difficult to serve.

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!

Increasingly agencies who are involved in
supporting people with intellectual and
developmental disabilities “talk the talk” of
person-centered approaches, but in reality, they
are mostly just filling out different forms to offer a
set of choices of their own creation. Individualized
support in pursuit of community inclusion requires
transparency about limits and a continuous effort
to remove systems barriers to inclusive outcomes.
Instead of “We don’t do that here” how about
“We’ve never been asked to help with that before,
but if we aren’t able to do it, we can offer to do
our best to connect you with other resources and
help make it happen.”

HOW TO SUPPORT INCREASED SOCIAL CAPITAL
FOR PEOPLE WITH INTELLECTUAL DISABILITIES
MORE

Family
Friends
Colleagues
Co-Workers
Classmates
Neighbours
Spouse

ONLY AS
NEEDED
Workers
Staff
Doctor
Psychologist
Psychiatrist
Social Worker

Have you ever asked a person with an
intellectual disability to list all of the important
people in their lives? How many of the names
they come up with would be in the red list, and
not in the green list? How stark a difference in
that list is there for the average person with an
intellectual disability versus other citizens?
Four steps to social capital: 1) Identify key areas
of interest 2) Find the matching group or
community 3) Understand how communities
behave 4) Finding a gatekeeper to acceptance.

An institution is any place
in which people who have
been labeled as having an
intellectual disability are
isolated, segregated and/or
congregated. An institution
is any place in which people
do not have, or are not
allowed to exercise, control
over their lives and their
day to day decisions. An
institution is not defined
merely by its size.
Task force on
De-Institutionalization

Above right, Ian and Warren Murphy (aka the
twins) enjoy a beer in their condominium
apartment with mom Elaine. Like many parents,
Elaine and her husband Jack recognized they could
not keep the boys at home forever, but were
unsure about other options. Over a period of
several years (including a demonstration project)
they made the move to living in a home of their
own with “outside in” support from LiveWorkPlay.
Below right, Caroline Matte was caught in the
social services safety net which kept her from
homelessness but she also became lost in the
system, living in a large group residence with a tiny
footprint of private space. This lasted for about
two years during which time Caroline, an active
artists, ceased to paint and draw.

LiveWorkPlay has developed excellent
partnerships with local non-profit housing
providers such as Centretown Citizens Ottawa
Corporation where Caroline now has an
accessible apartment unit. Her building is
comprised of people with all income groups,
but it is for anyone, it is not just for people with
disabilities or only for people of low income.
Her desire to paint and draw has returned, and
the latest and greatest news is that Caroline
has been dating – for the first time in more
than a decade.

Overall, the findings suggest that
across datasets, people with IDD
experience greater levels of
unemployment, underemployment,
low wages, and poverty compared to
those without disabilities.
Beyond the moral and ethical issues
involved, how can we continue to fund
segregated programs with government
funds (tax dollars) when federal and
state laws (ADA, IDEA, Rehab Act, and
more) mandate non-discrimination,
least restrictive environment, and other
basis tenets which promote inclusion,
equal access, and more?
- Kathy Snow, disabilityisnatural.com
“I WANT TO WORK”

Again, many of the systems solutions of today
came from the best intentions of yesterday and
have resulted in the maintenance of barriers to
inclusion in the future. Where people with
intellectual disabilities are congregated in a work
like setting and work for subminimum wage, we
need to come up with honest answers to
questions like: is sheltered work an
accommodation of disability, or is it an unfair
assumption about lack of worth of people with
disabilities in the labour market and ultimately in
society itself. I have used some US references
because statistical information available in Ontario
and Canada is weak. We have little idea about
where people with intellectual disabilities live,
how they spend their time, or who is helping them
and in what ways.

vs

“I WANT TO WORK”
“OK, WE’LL HELP YOU!”

Again, many of the systems solutions of today came from the
best intentions of yesterday and have resulted in the
maintenance of barriers to inclusion in the future. Where
people with intellectual disabilities are congregated in a
work like setting and work for subminimum wage, we need
to come up with honest answers to questions like: is
sheltered work an accommodation of disability, or is it an
unfair assumption about lack of worth of people with
disabilities in the labour market and ultimately in society
itself. At LiveWorkPlay we have largely abandoned even our
own traditional thinking about what it means to be “job
ready.” For an individual that states “I want to work” even as
we help them improve their chances of being hired, we keep
an open mind. For example, the story of Jeremy and Vaughn
(coming up). We know dedicate most of our time in
employment supports to establishing good relationships
with the people we are supporting and with employers so
we can be a bridge that connects the two.

We had known Jeremy for only a very short
time last year. The opportunity to support him
came up because his family was in crisis.
Jeremy had never had a paid job before, but he
was clear that he wanted to work. As a result of
a presentation to a local Rotary club, Vaughn
approached us, and in reviewing our list of
members looking for work, Jeremy was the
best possible fit, so with a number of steps we
helped bring the two together - and the rest is
history!

“THIS IS TUESDAY NIGHT LEAGUE BOWLING. PLEASE COME BACK ON
THURSDAY NIGHT AND SIGN UP FOR SPECIAL NEEDS BOWLING.”

BUT I’VE GOT A 180 AVERAGE!

If we can’t even bowl together, is the dream of
neurodiversity and an inclusive community
realistic? Why is there still so much “special”
out there: education, sports, and even
recreational bowling? Is there really a
justification for segregated bowling leagues,
other than a really bad habit that is helping to
reinforce ongoing discrimination? Subtle and
yet not so subtle discrimination sends
important messages about people with
intellectual disabilities and where they do and
don’t belong.

NO DAY
PROGRAM?
WHAT WILL
THEY DO
TO FILL
THEIR
TIME?

Play collage

The reality is, many of our members have developed such busy lives
that our staff can’t find time to meet with them to check in! This
includes post-secondary education (where we feel we are just getting
started in being successful supporters and advocates). It includes a
lot of JOINING that which is not segregated, congregated, or
clustered. In our experience, not one individual involved with
LiveWorkPlay who has been supported to transition from “special”
sports, education, recreation, arts, culture, vocation (etc.) has said “I
want to go back to the special place.” This doesn’t happen easily.
People with intellectual disabilities don’t have a typical experience of
simply “signing up” for things in the community and being welcome,
respected, and valued. Every day we learn something new and
develop our expertise with how to build bridges, develop
gatekeepers, and facilitate relationships. And sometimes we don our
human rights battle gear and fight discrimination head on. But
happily these issues are often requiring of negotiation and
diplomacy. The reality is, the coordinator of Special Needs bowling
mostly likely believes they are doing a very nice thing. They need
help to understand that there are other possibilities.

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.

Systems are a reality. They are necessary. But
when you find yourself struggling to determine
the value of a particular proposal, endeavour,
or activity, ask yourself how it supports the
development of the individual. We challenge
ourselves with this all the time. Sometimes we
have to compromise, but being aware that you
are compromising is sometimes the best we
can do. Instead of throwing up our hands to say
“this is all we can do” how about “this is all we
can think of for now, but we are going to keep
working on it!”

Do staff want to perform like stars? Sure! But we don’t want to be your world.

(Dave Hingsburger)

Well-intentioned organizations and individual staff
members that see the social capital deficit for people
with intellectual disabilities often try to fill that void
themselves. This is dangerous and sad. By creating such
a complete dependency, the future of the individual is
tied almost exclusively to the future of the organization
and the paid staff in their lives. So rather than
attempting to fill the void ourselves, we seek to act
more as a bridge, building connections in
neighbourhoods, workplaces, and social relationships.
Inviting community members to meet up with
LiveWorkPlay members to explore shared interests and
develop relationships (which often turn intro
friendships) is one of the most important ways that
LiveWorkPlay can facilitate (rather than replace)
reciprocal relationships in the lives of people with
intellectual disabilities.

“Ottawa's Race Weekend (May 28th - 29th) is a popular event
each year (http://www.ncm.ca/). Andrea and I are interested in
training with a team of LiveWorkPlay members to participate in this fun
event - either by walking or jogging the 2K, 5K, 10K, or half marathon.”

While many of our 130 active volunteers
contribute through 1:1 relationships (some of
which develop into friendships) volunteers are
also leaders and develop initiatives of their
own, like the LiveWorkPlay Race Weekend
Team which was started by volunteers and
continues to be lead by them with minimal
staff involvement. While some of the original
group continue to run and train together (a mix
of people who have disabilities and do not
have disabilities) others have joined their local
Running Room or other clubs and have develop
new relationships.

“I never thought from this I’d make such a good
friend that I send texts to all day every day!”

Sometimes organizations limit the potential
contributions of volunteers by prescribing what their
role will be. Volunteers are also a lot of other things –
they probably work somewhere and have all sorts of
personal and professional connections. With every
volunteer that invests in getting to know one of our
members (and vice-versa) this opens up a world of
opportunities. While it is often assumed that these
relationships are largely a one-way benefit, this simply
is not the case – neurodiversity is being realized every
day through 1:1 relationships of mutual benefit. This is
Ellyce and Emily. They started out as shopping buddies
and it quickly expanded into a full-fledged friendship, as
Ellyce recently gushed about the relationship “I had no
idea that from attending a volunteer orientation I’d end
up with a friend I text with all day!” Things have
advanced to the pinnacle of friendship: Emily is to be a
bridesmaid at Ellyce’s upcoming wedding!

What is the story we are telling about the work of human
services and developmental services in particular? We have
to teach the media that disability as equivalent to pitiable is
a way of thinking that has been on its way out since the
1970s. We need to tell stories about how our work helps
people become less dependent on systems thanks to the
development of relationships that support a fuller life in the
community. When we choose to tell stories about the
wonderfulness of the segregated environments we have
created, we send a dangerous message. Some individuals
with intellectual disabilities need intensive systems supports
and there may not be an easy way for them to transition to a
different way of living. These individuals should not be
considered lost and forgotten as within systems
environments there is much that can be done to impact
quality of life. But for the vast majority of individuals it’s not
the case that there are insurmountable barriers to greater
participation in the community.

Some of what happened - by trying!

78

We serve about 100 people with intellectual disabilities a
year – noting that a few of the people we are supporting
reach a point in their lives where they are just plain done
with the system – they’ve got a job, a home, and a network
of natural supports, rendering agency support redundant, or
at least the need is on hold if and until things change. Many
of our members choose to keep in touch even though they
don’t need much help anymore. These individuals and their
family members often become thought leaders that can help
us get our message out to internal and external audienes!
The only thing that trumps big moments like a person we are
supporting getting their first job or their first apartment is
the moment when they tell us “It’s been nice, but I’m not
sure I need you anymore.” Shouldn’t that really be our goal –
even if we might not always get there? So one test of our
outcomes is to ask “Are we reducing or increasing systems
dependency?”

What
We’ve
Learned
From
Loss

The best
insurance
for the
future is a
robust
network

When Chris Jones lost his mother with little notice and little
opportunity for planning, the immediate systems response was to
recommend systems solutions. I knew from having the personal
experience of Chris living in my own home (during a transitional
housing project) that he did not want and would not be successful in
a systems environment. But what to do? What happened instead
(and we can still hardly believe it ourselves) is the LiveWorkPlay
community and our community partners rallied around Chris and we
found solutions that were right for him. Chris now has a place to live
that he loves, has his own dog-walking business that pays well, and
has many friends and hobbies that he enjoys.
Rob More was killed tragically in the Ottawa bus-train crash of
September 18, 2013. Rob had not been in direct contact with
LiveWorkPlay for about 5 years. When his family reached out to us to
talk about Rob at his funeral service, we were honoured but baffled.
Well, it turned out that by getting support at the right time (as Rob
was a young man) for about 5 years was all the lift he needed to
launch his adult life – he had gone on to a ten year employment
career at IBM and to share a home with his sister. He had a very full
life and his parents took comfort that he had been living the life he
wanted to live when he passed away.

The Day Program?
THAT WAS EASY?
A robust network of
welcoming people
and places that
includes a home, a
job, friends, and
enjoyable things to do
in the community?
For EACH and EVERY
person we support?

HARD!
But it’s supposed to be about doing what is right, not what is easy…

The reality is, the day program was pretty easy – easy to
run, easy to schedule, easy to count – we could send in
our stats just by taking x people times x days times x
hours a day. Nobody ever asked us if the day program
was accomplishing anything beyond filling time. We
tried really hard to be great at running a day program.
But what kind of outcome is that? Certainly not one that
promotes neurodiversity! What we do now is HARD and
yet we all love doing this work because we are
contributing in a real way to changing lives and changing
our community.
The average number of relationships for citizens who do
not have a disability = 150 (and very few of them paid).
The average number of relationships for citizens who
have a disability = 25 (mostly people paid to spend time
with them, naming of “best friend” is usually “staff” or
“mom”).

http://www.helensandersonassociates.co.uk/

This is a simple and yet highly effective tool for
annual reviews with individuals and families, or
for any sort of problem solving at all. We used
it as a staff team at our 2012 retreat and as
individuals and as a collective, we came up
with all sorts of great ideas that saved the
organization time and money.

http://www.compasspoint.org/nextgenorgs

A GREAT BASIS
FOR CHALLENGING
YOUR ORGANIZATION
JUST WHEN YOU
MIGHT BE THINKING
“WOW, WE ARE AWESOME”
COMES THE REALIZATION
THAT STANDING STILL
ALWAYS RESULTS
IN ORGANIZATIONAL
DECAY. RENEWAL REQUIRES
CONSTANT VIGILANCE
AND AN ENERGY FOR
SELF-IMPROVEMENT!

The “Next Generation Organizations” can
inspire stimulating discussions. This ties in very
well with person-centred thinking and the
importance of supporting social capital. We
used the 9 Key Traits at a staff retreat in 2011
and came up with about a half dozen
fundamentally important changes.

People with intellectual disabilities are often
subject to a difficult “double-whammy” with
respect to decision-making: groups of
professionals are often too busy talking over
them, through them, or around them to find
out what it is they really want, and secondly,
we might expect them to make enormous life
decisions around a schedule that is convenient
to us, but is ignoring pressures or other issues
that make it a really bad time for them.

Progressing Towards the Mission?
Vision
A Community Where Everyone Belongs

Values
CORE: People with intellectual disabilities are valuable contributors to the diversity of our
community and the human family.
LIVE, WORK, PLAY

Mission
Helping the community welcome people with
intellectual disabilities to live, work, and play as
valued citizens

With respect to:




homes, health care, education, personal dignity, and personal privacy
paid work at minimum wage or better, short-term unpaid work, and volunteer positions
cultural and spiritual life, sports and recreation, political life, and the full range of human
relationship

People with intellectual disabilities have the right to the removal of barriers preventing them from
experiencing the community on an equal basis with other citizens.

Are we progressing towards the mission?

Impact

Outcomes

Increase in levels of social
capital

# members supported

# housing partnerships

# total affordable homes

# gatekeepers developed

# members employed

# new employers

# employers


# Friday night activities


# venues

# members active in
community venues

Increased personal income

# 1:1 Matches

Average Length 1:1 Match

# Fri Night Volunteers

LIVE

# Friendships

Impact on employers,
community venues, and
neighbourhoods

Success rates implementing
support plans

Satisfaction questionnaires

Decreased reliance on ODSP

Citizenship reviews
WORK

PLAY

RELATIONSHIPS

MEMBER
SATISFACTION

Increase in levels of presence
to contribution in community
activities

We can all see the writing on the non-profit
wall that it’s all about being evidence-based;
tracking outcomes and making an impact. This
can be seen as a challenge of re-wording our
policies, marketing, and flow charts, or perhaps
it’s an opportunity to re-examine our practices
and make meaningful changes that are better
for the people we support and the
communities that we should be helping to
change for the better.

I need to use this since it’s in the title! It seems
obvious, but people can’t have presence in the
community unless they are actually there…but
the world can be a lonely place even if we are
located right in the middle of a neighborhood.
So presence is a starting point. The importance
of what we do at LiveWorkPlay is supporting
people to progress from presence in the pursuit
of their own life goals.

This is an example of any easy tool that can be
used to suggest areas of improvement.
LiveWorkPlay was at about a 3 on these two
charts and we have worked hard to become
about a 4.5 on the appreciation chart and a 5
on the meetings chart. It’s very hard to get to a
5 in any of these areas, and that’s the point.
This is not a self-congratulatory exercise. It’s a
an improvement exercise.

Sometimes non-profit organizations forget that
there is more to partnerships than funding. For
example, when the local United Way Ottawa
realigned their focus areas to include the
employment of people with disabilities, we
jumped at the opportunity to work with them to
communicate a positive message about people
with intellectual disabilities in the workforce. They
used their substantial network to leverage all
kinds of free public service message space, and in
helping deliver the message, we of course received
the additional benefit of being seen as leaders in
our field. We have experienced a similar outcome
since getting involved with our local Rotary clubs
and the Rotary at Work initiative.

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!

The key to these success of course is that we have to
ask. The reason volunteers were making a relatively
minimal contribution to LiveWorkPlay in the past was
not due to a lack of engagement from the community, it
had to do with our own failure to ask – and also
required that we learn more about HOW to ask. Guess
what? Being REALLY SPECIFIC is a great help! Thanks to
posting very specific descriptions that include geography
and time commitments, we’ve experienced an explosion
in volunteerism, and notably, have attracted more
males, now up to about 40% when previously it was
more like 25%. By being less open-ended in the
beginning, first-time volunteers are less concerned
about being unable to “do enough” and so they often
start out with just a couple of hours a week and then
later decide to expand their contribution.

These people are COOL!

But does “volunteers” describe them?

From top left to right and down: rocking out at
Bluesfest, billiards, volunteering together at the
food bank, a pub night, a couple of cool nerds,
tennis anyone, marathoners, close friends (soon to
be in a wedding party), and a workout buddy. Not
a staff member in sight! Our organization made a
huge investment in helping create the conditions
for these relationships to develop and flourish. But
consider that the outcome creates social capital
that now exists beyond the confines of our
organization. This changes not only the lives of the
individuals, but the community as a whole. In the
end, inclusive attitudes won’t come from
legislation or public service announcements, it will
come from bringing people together.

CHANGING PRIORITIES: WHAT OUR MEMBERS WANT

We have an annual review where we ask a lot of
questions about changes in our members’ lives. We’ve
started tracking this and in 2014 we’ll have our first
comparative data. We do know from our 2013
information that interest in spending time with other
people is rapidly increasing as a priority. For those who
have been living in homes of their own for one year or
more (and in particular if they have obtained some level
of regular employment) their priorities are clearing
shifting to “engagement with others.” And it appears
the more they get the more they want. One of the
challenges of course is that these encouraging outcomes
are also a massive resource challenge – the more our
members expand their interests, the more challenging it
is to support success in these new community
territories. More volunteers please!

facebook.com/liveworkplayfans

liveworkplay.ca

youtube.com/liveworkplayvideo

twitter.com/liveworkplay

Because we have such a strong on-line presence
many people are often shocked to find out that we
are a relatively small organization. We use Facebook
not only as a public networking tool but also for a
variety of internal communications strategies. We
have focused on Facebook, YouTube, and Twitter as
our primary social media channels and are currently
growing our LinkedIn presence. Our leadership and
entire staff team have an accessible public presence
on social media that has contributed to our
reputation for transparency and accessibility. It has
also ensured that we are attractive to younger
volunteers and staff (average age of staff team is 32
and average age of volunteers is in a similar range
but also includes many retirees – they like social
media too!).

http://www.lapiana.org/strategy/real-time-strategic-planning

Whether trying to help one individual make a shift in
their life, or looking to make a bigger change at the
organizational or systems level, it can all seem very
daunting. But the best way to start is just to start.
One small change leads to another. Trying to script
out the change in 500 page binder often creates
nothing but a paperweight. Explore the benefits of
real-time strategic planning (google La Piana RealTime Strategic Planning). This has helped our staff,
board, and membership not only to make great
decisions but to be comfortable with a process of
change that is driven by a response to demonstrated
needs that change over time – not by what “the
binder” says we are supposed to do next.

I practice what I preach…if you
have questions, comments, ideas:
http://socialkeenan.com

Reach out to me with the method
that works best for you!

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

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