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An Ecology for the Development
of Individualized
Self-Directed Supports
Notes from workshops presented in Australia
July-August 2013
John O’Brien & Connie Lyle O’Brien

johnwobrien@gmail.com

Each workshop was a bit different, depending on the interests
of participants.These notes contain the key ideas presented in
each workshop and a few links to initiatives we think are
worth knowing about. The workshops also drew heavily on the
discussion of several stories, which are not included here.
You can find more by reading our books & papers. Follow the
links on www.inclusion.com/jobrien.html
Poems written from the experience of a direct support
worker http://www.inclusion.com/bkifyouarehappy.html
Songs from HumanService Land, including “Take me on my
outing” http://www.peterleidy.com

(1) The objects of this Act are to:
(a) in conjunction with other laws, give
effect to Australia’s obligations under
The Convention on the Rights of Persons
with Disabilities…

Persons with disabilities have the opportunity to
choose their place of residence and where and with
whom they live on an equal basis with others and are
not obliged to live in a particular living arrangement
Persons with disabilities have access to [the]
personal assistance necessary to support living and
inclusion in the community, and to prevent isolation
or segregation from the community
–UN Convention on the Rights of
Person’s with Disabilities
Article 19: a) b)

[We] recognize the right of persons with
disabilities to work, on an equal basis with
others; this includes the right to the opportunity
to gain a living by work freely chosen or
accepted in a labour market and work
environment that is open, inclusive and
accessible to persons with disabilities.
–UN Convention on the Rights of
Person’s with Disabilities
Article 27

In other places, pressure for change toward work & real homes from people &
families has been less acute than service providers anticipated. The main
pressures have come from the effects of the system for managing allocations
of money.

I choose how I want to manage my
individual budget & I negotiate my support
Most who have services choose continuity
Most prefer to delegate to a provider, especially for 24
hour supports
Most report positive effects, especially when the
process is friendly
A small minority experience an increase in work in
open employment or participation in community life

For people with ID/DD, there DisabilityCare has a
particular concern for continuity that does not
demand social invention. e.g.…
the opportunity to gain a living
by work freely chosen or
accepted in a labour market
and work environment that is
open, inclusive and accessible
to persons with disabilities.
–Article 27

Ministers read Article
27 as fulfilled by
providing settings
that congregates
people with
disabilities in separate
workplaces.
We read the article
as inconsistent with
such settings.

See http://ncid.org.au/index.php/employment-first

…assistance necessary to support living
and inclusion in the community…
… work freely chosen or accepted in a
labour market and work environment that
is open, inclusive and accessible
How do we increase our ability to make these rights
real?

Communities with
capabilities to support lives
that people value living
Best
chances for
DisabilityCare to
achieve its objects

Social
Inventions

Real wealth
including
responsibility for
investing available
public funds

Real Wealth is created through action that realizes the rights set
forth in the Convention.

Connections

Practical
Knowledge

Resilience
Money & the
ability to direct
its investment

Capacities
Thanks, Pippa Murry & Simon Duffy
http://www.centreforwelfarereform.org/library/by-az/real-wealth1.html

First Nations Elders in Canada say…

Good health is not simply the outcome of
illness care and social welfare services.
It is the outcome of…

……living actively, productively & safely
…with reasonable control over the forces
affecting everyday life
…with the means to nourish body and soul
…in harmony with one's neighbor & oneself
…with hope for the future
Royal Commission on Aboriginal Peoples (Canada) (1996)

Communities with capabilities
to support lives that people
value living

Real wealth
including responsibility
for investing available
public funds
Good communities organize to create the capabilities that make good health/
real wealth possible, people with intellectual & developmental disabilities can
contribute if we

The Answer is Broccoli
Once upon a time in the far north of the US a
farmer wanted to diversify his crop and grow
broccoli. He talked about it with is friends, who told
him “Everybody know you can’t grow broccoli in this
climate.” He asked the University Agricultural
Extension Service for advice & their expert opinion
was, “It is impossible to grow broccoli in this
climate.”
He was not so sure about what “everybody knows”
& decided to try anyway. He looked beyond the
boundaries of his peers & his state’s experts learned
about 3 varieties of broccoli that might grow. He
planted all three in small patches, observed for a
couple of years & discovered one that flourished.
Now broccoli is a major cash crop in his area.

To make the most of DisabilityCare we need many
broccoli patches at every level of scale from
partnership between individual people with disabilities
& direct support workers to collaborations among
organizations. It’s the responsibility of anyone in
authority to make it possible for those they manage to
tend & learn from a broccoli patch for which they take
responsibility.

People & allies who choose partnership
to test what “everybody knows” about
home life, contributing community roles,
& work by creating social inventions that
support contributing community roles.

Social inventions build new relationships that
generate the practical knowledge necessary
to support people to show up where they
have been invisible

Real wealth
Capabilities that increase the chances
that people will live a life that they
and those who love them
will have reason to value

Real Wealth

Experience of a variety of community
roles that provide knowledge of
interests & capacities.

Real Wealth

Confidence based on experience that
we can take action, solve
problems, deal with breakdowns &
difficulties & cope with prejudice

Real Wealth

A hopeful & positive vision for a
contributing community future.

The fundamental
questions in
person-centred
planning

What gifts can you
bring that express your
highest purpose and build
your community?
What does it take for those
gifts to develop & be
received?

Real Wealth

Practical knowledge of necessary
accommodations & what works in
providing needed assistance

Real Wealth

A diverse network of people who
believe in you & will actively back
you.

People who back you know you are“100% there”
we accept mutual
responsibility to learn to…

rather than acting on the
assumption that…

establish communication

“she has no language”

create conditions for selfregulation

“he is too violent to live
outside a specialist setting.”

actively promote wellness

“he is too medically fragile to
live outside a nursing home”

discover meaningful adult
roles & activities

“she has the mind of a
5-year-old in an adult body”

Powerful forces keep people with intellectual & developmental
disabilities at the margins of society. In response, most services
support life patterns that are like community life, but conducted at
its outside edges. Service settings are often a sort of sanctuary. This
offers many people support for a life at the margin that works for
them but diminishes Real Wealth for all.

Limited
networks

Inflexibility

Invisible
capacities

Limited
repertoire of
accommodations
Sense of
“us – them”

Structure
for groups

Reproduction
of separateness

Physical
inaccessibility
(transport)

Parallel ways of organizing, some of which bring people into
contact with other citizens who volunteer support or
patronize them have given people significant ways to
strengthen their voices & their gifts.

Very Special
Arts

Special
Olympics

Independent
Self-Advocacy

“We stopped thinking about activities & started
thinking about membership & contribution.”

“We put on our walking shoes, went out & talked to
people, at first just to learn what is happening.
Things just went on from there.”

The next stage of making the Convention real
involves inventing ways to bridge

community associations

workplaces

A good sense of your capacities, gifts & available
resources
Realization that your gifts are needed by people you
don’t know yet
The confidence that comes when those who know
you are behind you
A good idea of the access, accommodations &
assistance that make you successful
Expanding your local knowledge of places your gifts
could be welcome
Contacts on the inside who can extend an invitation
& a welcome

My best definition of
inclusion is:

People participating
together to do
something that makes
the community better
for everybody.
-Chris Hunnicutt

For Starfire, a typical day program,this picture of 51 people’s
social relationships has shaped real change. Learn how at http://
cincibility.wordpress.com/2012/06/08/51-people/
51 People with disabilities

Paid Human Service Professionals
Average: 24.39

Family
Average: 7.76

Other People with Disabilities
Average: 68

To learn more about
an organization
transforming itself
into a support for
community building
& the creation of real
wealth, follow their
blog at http://
cincibility.wordpress.
com & Starfire
Council on FaceBook
If you have an iPad,
read their free iBook:
Cincibility:The Five Valued
Experiences

Text

Friends
Average: 2.41

Other citizens
Average: 2.75

Note: 9 of the 51 people had only paid human services professionals and other people with disabilities in their circles.

Support Young Adults to Build Real Wealth
Identify a gift to
community based on
your interests &
capacities

Gather a
committee including
community members
who share your
interests

Create the project, give
the gift & celebrate

Read about it: http://
cincibility.wordpress.
com/2013/07/09/
beer/

“…the well connected are more likely to be
hired, housed, healthy and happy.”

“The central challenge for
modern, diversifying
societies is to create a
new, broader sense of
‘we’.”
Robert Putnam

Community
capacity

*
Real
wealth

The Alberta Association for Community Living has developed
important social inventions & learned many important lessons
about partnership. Two important inventions:
Inclusive Post-Secondary Education in partnership
with 19 post-secondary institutions across the province (see
http://www.aacl.org/inclusive-education/post-secondaryeducation-overview/)
The Rotary Employment Project in partnerships with
2 Rotary Districts (see http://www.aacl.org/partnershipsprojects/rotary-employment-partnerships-overview/)

Community Building calls for personal development
• Notice separations: ways you keep disability concerns
distinct from other concerns in your own life
• Is there silence where intentional conversation is
possible?
• What (unspoken) assumptions encourage silence?
- Likely rejection
- Likely withdrawal
- Breaking a rule
- I have to have a complete proposal
- I have to figure it out alone
• Is there a possibility to try intentional conversation

Can’t control or pre-plan the details
Can create conditions under which
involved people can…
…clarify & refine purpose
…learn better ways to realize purpose
…extend the numbers benefiting
…maintain integrity

Sing their songs
Honor their purposes
Learn their language
Consider their traditions,
history & identity

Re-think your world
(Enter their world)
with the question
How can this setting or association take up
responsibility for inclusion?
Thoughtfully weigh their
fallibilities & limits.

Discover their customs for
decision making, deliberation, &
persuasion

Be very thoughtful about what you ask for.
We do not want the short run gain of “Give me
something” we want the long term gains of this
setting or association taking up responsibility for
inclusion.
Have the courage to stay engaged and try things
from an “I don’t know, lets figure it out together”
position is powerful as long as we keep out of the
ditch of “give me money & walk away”
Don’t bring our answers, keep the focus on their
agenda

Build with those who have “dual
citizenship”
Frame inclusion in terms that draw
meaning from their purposes, values, &
traditions, both stated & informal.
Excellence in
accommodating diversity

Link to other changes in the collaborating
site.

AACL’s approach to social invention is consistent with this approach, based on
research with business & social entrepreneurs.

1. Know what you want
2. Take a smart step toward the
desire as quickly as you can. Act
with what you have & bring
others in

3. Make reality your friend. Accept
what is & build off what you find.
4. Repeat

Community Capabilities
Group Personal-Futures Planning brings together 5-8 circles of people, family & allies who
are at a similar crossroad in their life (e.g. leaving school, moving into their own home). People &
families participate voluntarily –while the work they do can provide a strong foundation for
negotiation with publicly funded services, the process is separate from the service system &
encourages the greatest possible use of resources available outside the service system.
The group meets initially over a Friday evening & Saturday in a community setting to create a
Personal Futures Plan which identifies 2 or 3 opportunities for meaningful community engagement
that the person has active support to explore. The group gathers at least every three months for one
year to share what they have learned and extend their plans. An experienced facilitation team guides
the whole process through which each circle self-manages the creation of their own plan & shares
what they are learning from each step.
The Personal Futures Planning process guides an exploration of the person’s identity, gifts &
resources from the point of view of five valued experiences. The process is described in Make a
Difference http://www.inclusion.com/bkmakeadifference.html
Belonging
Choosing

Contributing

Being
Respected

Sharing
Ordinary Places

Community Capabilities

lovdane.org

LoV Dane is an organization
of families & people with
disabilities who have small
allocations of public funds.
Its members have invented a
variety of mutual supports
that have enriched their
lives.

Community Capabilities
TimeBank is “a network for individuals and
organizations who exchange time in order to build
community, build capacity, and come together to help
each other to build a better world.”
TimeBank provides a powerful medium for people
with intellectual & developmental disabilities to
contribute & to earn time credit that extends their
income.

http://timebanks.org

Community Capabilities
Art of Hosting is a learning
experience for community
leaders who want to
increase their abilities to
bring people together for
conversations that matter
about local and global
issues. It has proven a
powerful source of
connection to other
community builders.

Community Capabilities
Real Communities is a initiative aimed at
encouraging those already working to build
community to intentionally include the
contributions of people with intellectual &
developmental disabilities.

http://www.gcdd.org/real-communities/


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