a) What do we mean
by advocacy?
b) What is the
relationship between advocacy, information and
disability service provision?
c) What should be the
framework of advocacy and information service
provision in NSW?
a. What do mean by
advocacy?
If stakeholders in NSW are
to work positively through a debate about
advocacy (a debate that will sometimes be
difficult) we must try to reach agreement about
what we mean by "advocacy" or we need to agree
that we cannot agree. Whether or not we agree on
a definition, however, we have a responsibility
to find ways (to the best of our abilities) to
re-structure and develop an advocacy service
system that serves the interests of people with
disability.
We must not simply use the
language of advocacy, and definitions that
underpin that language, as if all current
stakeholders were talking about the same things.
It is clear that we do not all agree all of the
time about what is or is not an appropriate
definition or description of an advocacy
service. The sector in NSW is going to have to
tackle this unresolved question, as must the NSW
Government, which will fund most of any
disability advocacy service system that develops
in years ahead.
It seems useful,
therefore, to re-restate some principles to
which PDCN subscribes. In doing so, however, we
acknowledge that not every organisation
currently funded under the NSW Disability
Advocacy and Information Programme will feel
entirely able to sign up to the following
principles:
- Advocacy must be
independent;
- Advocacy must be
autonomous;
- Advocacy must be
unambiguously on the side of the person or
people with disability;
- Advocacy must focus on
the fundamental human needs, rights and
interests of people with disability;
- Advocacy should have a
clear value base of social justice and full
inclusion of people with disability as
contributing/participating members of the
community;
- Advocacy is about
achieving justice;
- Advocacy is about
achieving equity;
- Advocacy must minimise
conflict of interest;
- Advocacy must remain
loyal and accountable to the disadvantaged
party over the long term where necessary;
- Advocacy is distinct
from service delivery;
- Advocacy is not
service provision or personal care support.
(Slightly revised from The
National Advocacy Workshop "core principles",
June 1994. The key revision is to remove "strive
to" from the first 3 bullet points.)
To the core principles
above, PDCN would add the helpful comments by
Robyn Banks and Rosemary Kayes, in 'Disability
Advocacy: Too Much Talk and Not Enough Action':
that the goal of advocacy should be to achieve
far-reaching social change through the removal
of disabling barriers and that Government should
support a strong advocacy sector founded on
commitments to:
- Self-determination by
people with disability
- Accountability of
individual advocates (and advocacy
organisations)
- Systemic change rather
than 'fire fighting' and/or crisis avoidance
/ resolution.
To which components we
would add also the simple but necessary
requirement that in advocacy, as in everything
to do with decision-making about the lives of
people with disability, there should be "nothing
about us without us". It ought not to have to be
restated but it still needs to be said,
unfortunately: we need to ensure that people
with disability are centrally involved in the
debate about disability advocacy.
One working definition of
advocacy, which we endorse, is:
"Advocacy is
pursuit of influencing outcomes - including
public policy and resource allocation
decisions within political, economic, and
social systems and institutions - that
directly affect people's lives."
"Advocacy consists of
organized efforts and actions based on the
reality of "what is." These organized actions
seek to highlight critical issues that have
been ignored and submerged, to influence
public attitudes, and to enact and implement
laws and public policies so that visions of
"what should be" in a just, decent society
become a reality. Human rights - political,
economic, and social - is an overreaching
framework for these visions. Advocacy
organizations draw their strength from and
are accountable to people - their members,
constituents, and/or members of affected
groups."
"Advocacy has
purposeful results: to enable social justice
advocates to gain access and voice in the
decision making of relevant institutions; to
change the power relationships between these
institutions and the people affected by their
decisions, thereby changing the institutions
themselves; and to bring a clear improvement
in people's lives."
(Volume I: Reflections
on Advocacy by David Cohen, Co-Director,
Advocacy Institute, http://www.advocacy.org/definition.htm)
Working within the
parameters set by the definitions and
descriptions above, it's safe to consider the
two ways in which advocacy has been addressed by
the disability sector in NSW and by
Government.
- Individual advocacy
- Systemic advocacy
And to these two types of
advocacy work, we need to add consideration of
this two-part question:
What is a peak body and
how does it relate to advocacy?
Individual
advocacy
PDCN has made it clear
(every time we have been asked) that we
believe there is a pressing need for
individual, one-to-one, problem-solving
advocacy. We need more of such
advocacy.
People with disability
are, first and foremost, individuals. We
belong to a socially disadvantaged group that
experiences discrimination on a daily basis.
But we live with the consequences of that
discriminatory reality as individuals who are
members of families and/or
communities.
PDCN recognises that
power is distributed unequally in society.
There are imbalances between people with
substantial or some power and those with less
or no power. There are also imbalances in
power between social institutions,
organisations or social structures and people
who relate to them in some way, often as
actual or potential service users.
People with disability
need the support of individual advocacy not
because we are weak or deficient or incapable
or inadequate but because power is
distributed unevenly in society. There are
histories, policies, customs, practices;
cultural, racial or gender assumptions and
class, ideological or social barriers that
have been created and are maintained by the
way power is arranged in modern, complex
societies such as NSW.
Individuals with
disability find themselves disadvantaged by
the imbalances of power flowing from the
broad context within which institutions and
organisations in NSW operate. In such
circumstances, individual advocacy services
can help to equalise the inequality of
distribution of power. It is to achieve a
fairer balance of power that we favour more
individual advocacy for people with
disability.
Systemic
advocacy
Individual advocacy is
a necessary support mechanism for people with
disability (and for people with no
disability). But individual advocacy is not
sufficient on its own.
Individuals live within
social, cultural, economic, political and
ideological systems. We act within and upon
those systems and they act upon us. And, as
we have noted, individuals, organisations and
systems hold power to varying
degrees.
It is clear to PDCN
that people with disability (like many social
groups in society) need systemic advocacy.
Almost all of the work carried out by PDCN
sits as evidence of the need to engage in
systemic advocacy.
Our goal is relatively
straightforward: we seek to change the way in
which the social systems of NSW are organised
to overcome the barriers of social exclusion
and discrimination that work against the
interests of people with a disability as a
social group. There are systemic barriers,
which constrain our lives as individual
members of that group. They require a
systemic response.
In short, therefore, we
believe there is a need for more individual
advocacy and for more systemic advocacy to
work with people with disability as
individuals and as members of social groups.
The comments that follow, therefore, concern
how advocacy services might be better
organised in NSW.
Advocacy service
development in NSW
There is a great deal of
good work currently being done in NSW with
regard to both individual and systemic advocacy.
The NSW Government funds some of that work, some
of it is funded by the Federal Government and a
large part of it (we believe most of it) is
carried out on a voluntary, unfunded
basis.
Although services and
service systems (not just disability related)
may not, at first, welcome advocacy, we believe
that effective advocacy results in benefits to
individuals, to groups and to service systems
themselves. Individual and systemic changes
brought about with the support of advocacy
create a new paradigm that works to the benefit
of all. In short, advocacy is a good thing
producing good results for everyone.
Not all the effort that
goes into advocacy services in NSW results in
the maximum benefit for stakeholders, however.
There is currently some wastage and duplication
of resources. The best intentions and efforts of
concerned advocates and advocacy organisations
are sometimes dissipated because the framework
of advocacy in NSW is incomplete, patchy and
struggling to cope (both with the task and with
demand).
PDCN subscribes to these
views:
- We need additional
funds to make possible a managed growth of
advocacy services (individual and systemic)
across the state.
- We need better use of
existing and growth funds to maximise benefit
to service users and social groups of people
with disability.
- We need to build the
competencies and skill bases of individual
advocates and advocacy organisations. This
may require specialisation of services,
targeting of agencies that serve clearly
defined areas and recognition (through
funding arrangements) that not everyone can
or should be all things to all people.
- We need local and
statewide services.
- We need disability
specific advocacy services for individuals
and at the systemic level.
- We need to ensure that
all advocacy services become more culturally
competent to meet the needs and aspirations
of people from culturally and linguistically
diverse backgrounds, including people of
aboriginal or Torres Strait Islander
backgrounds.
- The generic service
system of advocacy agencies (welfare rights,
advice shops, the legal professions, etc)
must become better equipped and ready to
include more people with disability within
their client profiles.
At this point, we need to
return to the question: what is a peak
body?
The term peak body
is bandied around as if everyone knew and/or
agreed about what was being discussed. We're not
convinced, however, that everyone is talking
about the same 'creature' when they use the term
peak body. We need, at least, to agree on what
we are talking about if the proposal that 'peaks
should be funded' is to be picked up by
Government.
According to one
definition:
"A peak body is a
body corporate formed to promote the
interests of its member bodies. The formation
and membership of a peak body is a common
feature of organisations with allied purposes
and aspirations, as is illustrated in local
government, the professions, industry and the
community service sectors."
'The goal of a peak
body is to achieve a collective outcome for
their members. Primarily peak bodies
concentrate on:
- advocacy and
lobbying;
- representation in
relevant forums;"
NCOSS describes itself as
"the peak body for the social and community
sector in NSW." It is, according to the NCOSS
strategic plan,
" … an
independent voice on social and economic
policy issues and reforms and is the major
co-ordinator for non-government social and
community services in NSW. …
[acting] as a channel for
consultation with government and between
parts of the non-government sector with
common interests and diverse
functions."
We see common strands in
these definitions (and others) of what
constitutes a peak group. With regard to the NSW
review of advocacy services we believe that the
following components contribute to a useful
description of a peak:
- A peak is independent
of direct service provision;
- A peak is autonomous;
- A peak has member
bodies (not just individuals) that share a
common interest, purpose or aspirations;
- A peak seeks outcomes
that benefit the members / constituents /
customers / clients of the peak's member
bodies;
- A peak exists in
relation to a defined community or locality
e.g. peak multicultural body; peak regional
association; peak state-wide body;
- A peak may
co-ordinate, lobby, represent, inform,
consult with or on behalf of its member
bodies who share the objectives of the peak.
- A peak has a
demonstrable "footprint" within or across its
constituency or locality of interest.
Many organisations can
demonstrate one, some or most of these
attributes. Only a peak exhibits all of them.
Being biggest (in size, income or individual
membership) does not make an organisation a
peak. Size doesn't matter: what the organisation
does is what counts.
b. What is the PDCN view
of the relationship between advocacy,
information and disability service
provision?
It is something of a
cliché that "knowledge is power". It's
only true that power flows from knowledge if one
knows what to do with knowledge or can use the
knowledge one possesses. In that sense,
therefore, it seems clear to PDCN that advocacy
and information can be and often are closely
related. More often than not one complements the
other.
That is not to suggest
that advocacy and information are the same
things. They are clearly different.
Information can be
provided without recourse to advocacy at all.
The simple fact of receiving information can be
empowering for disadvantaged people (including
people with disability). Often, access to good
quality information is all that is need to make
it possible for an individual to assert his or
herself within any of the power relationships we
all enter into from time to time: applying for a
service, using a service, seeking redress for an
injustice, etc.
Advocacy, on the other
hand, cannot exist without information. Advocacy
is effective only when informed service users
make choices that direct the work of an advocate
(whether that is oneself, a volunteer or paid
advocacy service provider).
Any and all services that
purport to provide advocacy and/or information
services must be unambiguously clear about the
parameters within which they operate. We see a
range of service options:
If information provision
is the sole concern of an agency that must be
clearly articulated and inform the operating
practices of the agency.
If information AND advice
are the concerns of an agency there must be a
clear indication of the circumstances and point
at which the agency's personnel move from
informing to advising.
If advocacy is the sole
concern of an agency it must be made clear that
informed service users direct the course
advocacy takes. It may be, in some
circumstances, that an informed service user
rejects advice based on good quality information
to pursue a course of advocacy to which the
service user is, nevertheless, personally
committed.
Where an agency offers
information AND advice AND advocacy services it
is critically important that service users
understand the differences between the three. In
such circumstances we would expect to see
demonstrable evidence of very high levels of
staff competency.
PDCN believes that there
is a direct and almost wholly irreconcilable
conflict of interest between advocacy service
provision and direct provision of disability
services (e.g. residential or personal support
services; transport or community options). We
believe that organisations should concentrate on
their core businesses:
- information services
should provide information;
- advocacy services
should provide advocacy services;
- disability services
providers should provide disability services.
c. What should be the
framework of advocacy and information service
provision in NSW?
Based on all of the above,
PDCN makes the following suggestions for
constructing a framework of disability advocacy
services in NSW.
Individual advocacy
services
There should be a least
one cross-disability individual advocacy service
in each of the eight regions created by DADHC.
Each service should be managed and controlled by
a cross-disability Board, the majority of whose
members are people with disability living in the
region served by the service. Each of the
disability specific types represented by the
statewide peaks (below) must be represented on
Boards.
Regional services such as
we describe should have:
- A viable and
sustainable base with competent staff and
volunteers located in the key population
centre of the region;
- A broad range of
skills in an adequate staff team
- Capacity to fund
and/or organise outreach advocacy services in
generic services outside of the key
population centre
- Links to other
regional advocacy services.
- Links to generic
advocacy and advice services.
- Links to statewide
peaks.
- Systemic advocacy
services
The State Government
should fund a range of disability peak bodies
with a statewide remit that includes systemic
advocacy. We propose one each for:
- People with brain
injury
- People with hearing
impairment
- People with
intellectual disability
- People with physical
disability
- People with
psychiatric disability
- People with vision
impairment
additionally
- A peak body / systemic
advocate body for people from culturally and
linguistically diverse backgrounds.
- A peak body / systemic
advocate body for people from aboriginal and
Torres Strait Islander backgrounds.
It is possible that such
state peaks could be funded to carry an
individual advocacy caseload, particularly in
circumstances where precedents may be set.
Alternatively it may be that such peaks should
be constructed solely on their systemic role and
membership base. PDCN favours the
latter.
In addition to carrying
out systemic advocacy for their population
groups, State peaks would be funded to commit
time and resources to:
- Developing and
supporting a collaborative, inter-agency
'peaks council'. We do not support the
concept of a peak of peaks.
- Building the capacity
of local, regional and state wide agencies in
disability specialist and generic service
systems to advocate on behalf of individuals
with disability.
How should information
services be organised?
We see a need to improve
information services generally and with regard
to disability specific matters. Specialist and
generic information services should work
together to build a network that covers all
people across the whole state. It is clear,
also, that State supported disability
information initiatives need to relate better to
developments underway in State information
services generally, they should connect with
Commonwealth initiatives and the they should be
consistent with and informed by local government
practice.
We caution against an
over-reliance on IT when considering the
development of services that meet the
information needs of people with disability. IT
generally and web-based systems in particular
can be powerful tools that assist people to find
information and begin to use it. But they are
tools not panaceas. We note that a substantial
proportion of the population does not have
direct access to the Internet. This is
particularly true for people on low, fixed
incomes such as recipients of Disability Support
Pension.
Knowledgeable, expert,
trained, competent information professionals are
essential to the development of information
services for people with disability. IT systems
are useful tools but they can never substitute
for human assistance in negotiating one's way
through the information maze with which many
people are confronted. The human dimension to
providing information to people with disability
must never be lost, forgotten or
under-valued.
The development of good
quality information systems and networks that
meet the information needs of people with
disability will require the
following:
- Understanding that
people with disability are not reducible to
their impairment type or condition. We are
whole human beings with a diverse set of
information needs that are just as broad as
the population as a whole. Developing systems
that meet the information needs of people
with disability requires, therefore, action
with regard to:
- Generic information
services; as well as
- Disability
specialist information services.
All generic information
providers (e.g. events, tourist, transport,
consumer, weather, employment, legal, etc, etc)
must ensure that their offices, their personnel
and their information systems are inclusive of
and accessible to the whole community, including
people with disability.
Disability specialist
information services need to be developed and
supported as complementary to generic services
not substitutes for them.
There should be a
disability information resource with trained,
expert, specialised disability information
contact staff in each DADHC region. Such
resources need not be separate organisations.
They could be focused units within existing
generic providers or information units linked to
regional individual advocacy services.
Where disability
information services covering regions currently
exist these should be supported to grow into the
regional base of the type we describe above.
In addition to regionally
based resources there should be a disability
specialist, statewide service using web
technology and a 1800 number operating as a
common entry point to the following services:
- Sign post to local
services;
- Sign post to
disability specialist information;
- Information only (not
advice or advocacy) with access to currently
available and emerging information databases;
- Internet access to
self-searching databases;
- Referral to
interpreting services;
- Service capacity
building.
A non-government, not for
profit organisation acting on behalf of the NSW
Government, should operate the statewide
information service we describe above. The
provider should be managed by a Board of people
with disability drawn from the stakeholder
interests represented by statewide peaks and
partners from Government and non-government
information experts.
PDCN Submission
ends
Wednesday, 16th July
2003
