Chapter 3
Assistance for people with disability and others: the role of advocacy
How is advocacy to be recognised?
3.1
Disability advocacy comes in two forms:
Individual advocacy supports
people with disability to exercise their rights, through either one-to-one
support, or by supporting people to advocate for themselves individually,
through a third party or on a group basis.
Systemic advocacy seeks to
introduce and influence longer term changes to ensure the rights of people with
disability are attained and upheld to positively affect the quality of their
lives.[1]
3.2
Ms Jacqueline Pierce from Karingal Inc. in Victoria described individual
disability advocacy in the following terms:
I think the simplest way to think about advocacy is this.
There are three roles. One role is to stand in front of a person and actually
protect them when they need that. Another role is to stand beside somebody and
empower and enable them to navigate their way through the service system. The
final role of advocacy is ultimately to stand behind people and give them moral
support and catch them when they fall. So I think that that is a nice, easy way
to try and understand how advocacy can and should work for individuals with a
disability.[2]
3.3
Systems advocacy was also discussed in detail throughout the hearings
and submissions. Blind Citizens Australia (BCA) outlined why they thought there
was an enduring role for advocates to ensure that the system reflected the
needs and circumstances of its users:
NDIS will not address systemic barriers therefore there is a
need for systemic advocacy...Our members continue to report the barriers they are
experiencing in access to employment, access to public transport and access to
acquiring information in a format that matches their needs.[3]
3.4
Many submitters commented that the bill was silent not only on the role
of advocacy, or the funding of it, but that it omitted it almost completely. The
Developmental Disability Council of WA and People with Disabilities WA posed
the question 'why is the legislation silent' on the role of advocacy?[4]
They argued that even if it is not being funded under the NDIS, 'it must still
be enshrined in the context of a Bill which is designed to enable the promotion
and provision of support and choice to people with a disability'.[5]
AFDO noted that, '[t]he legislation does not talk about, for instance, a right
to advocacy support for people who access the NDIS.'[6]
BCA also contributed on this issue:
In the current bill, there is no reference to advocacy, in
particular self-advocacy, which is vital in building the capacity of people
with disability to make their own decisions and to question decisions. We
recommend the inclusion of a clause in the general principles to cover this.[7]
3.5
DANA submitted there was a need to enshrine in legislation the right to
advocacy services for anyone who needs it:
Missing from the stated objects of the draft Bill, as well as
from substantive clauses, is any recognition that an entitlement to funded
supports will necessarily entail a guarantee that independent disability
advocacy is available to those who need it.[8]
Funding of advocacy services
3.6
Currently, disability advocacy organisations receive their funding from
several sources. For example, the Brain Injury Association of NSW lists its
primary funding sources the NSW Department of Family and Community Services,
NSW Health, and FaHCSIA.[9]
DANA reported that in the 2011 financial year it received around 45 per cent of
its funding from the FaHCSIA.[10]
It was reported that FaHCSIA provided funding to 60 advocacy organisations
across Australia in 2011–12.[11]
3.7
The Productivity Commission's report recognised the role that advocacy
plays in securing equitable access to services for individuals and also for
promoting systemic change. The report also recognised that a potential conflict
of interest lay in advocacy organisations being reliant for funding on the body
that they are likely to challenge:
Advocacy plays an important role in the disability system.
Systemic advocacy pushes for broad policy and social change, while individual
advocacy promotes the interests of particular individuals by acting on their
behalf to resolve specific issues. These functions should lie outside the NDIS,
reflecting the potential conflict of interest that would arise were the NDIS to
fund advocacy bodies whose role was to challenge the disability system overseen
by the NDIS. Current funding arrangements through FaHCSIA and various state and
territory governments should continue.[12]
3.8
The Commission formalised these views in Recommendation 10.4 of its
report:
The Australian Government, through the Department of
Families, Housing, Community Services and Indigenous Affairs should continue to
provide funding for general advocacy by non-government organisations, with no
involvement by the National Disability Insurance Agency in this funding role.
State and territory funding of disability advocacy groups
should continue.[13]
3.9
On the broad issue of funding DANA suggested that there will be a
significant increase in the need for advocacy services following the
introduction of the NDIS and that this needs to be reflected in budget terms.
Their specific budget proposal was that advocacy funding should be
proportionate to the total spend on disability:
[T]he amount of money that is provided for the advocacy
sector should be relative to the total amount of funding for disability. In
2009, the advocacy sector received 1.3 per cent of what was, in that year, the
total national disability funding under the National Disability Agreement. DANA
have suggested, and is asking, that the current funding for advocacy be
increased to maintain that same relativity. So as increased funding comes into
the NDIS, that 1.3 per cent proportionately...comes into advocacy and, as the
NDIS in rolled out completely, that advocacy funding is doubled within the next
four years, and preferably that would happen quicker in the launch sites.[14]
Within the scheme or separate?
3.10
Whether advocacy services should be funded within the scheme or
separately was the subject of much debate throughout the inquiry. The department
indicated that it accepted the approach taken by the Productivity Commission to
advocacy:
The Bill therefore does not include provisions that would
allow the Agency CEO to fund formal advocacy services. The Department would
consider that funding for formal advocacy is better done through existing
programs. Responsibility for funding of disability advocacy is shared between
the Australian Government and state and territory governments. The Australian
Government funds 59 agencies to provide disability advocacy through the
National Disability Advocacy Program (NDAP). The NDAP provides people with
disability access to disability advocacy that promotes, protects and ensures
their full and equal enjoyment of all human rights. In 2012–13 the Australian
Government will provide $16 million under the NDAP to fund 59 organisations across
Australia. The Department understands that many advocacy organisations would
see the NDAP and parallel programs in the States and Territories as the
appropriate source of funding for formal advocacy.[15]
3.11
DANA sought independence of advocacy funding, but argued this did not
mean the commitment to funding should lie outside the NDIS:
If NDIS is to be effective in targeting those most in need of
supports, it must acknowledge that the funding of independent disability
advocacy agencies (and the encouragement of family, friend and other informal
modes of support) will be a necessary design feature of the Scheme. DANA urges
the explicit provision, in the NDIS Bill, for the use of NDIS pool funds for
this purpose. Those funds should not be administered directly by the proposed
National Disability Scheme Agency (NDIA), but channelled to a suitable
government agency to permit the expansion of existing disability advocacy
programs.[16]
3.12
The Ethnic Disability Advocacy Centre (EDAC) indicated that the key
matter was whether the funding originated from an agency whose decisions might
be the subject of challenge by the funded advocate:
If the NDIS fund it I would think it would be a conflict of
interest if NDIS is providing the service, because at some point advocacy may
challenge what they do and you cannot be the service provider and the
challenger at the same time, in my view. EDAC feels the same way. The
importance of an independent advocacy service needs to be articulated in the
legislation, and it needs to be funded outside because the NDIS is not the only
agency that we may be challenging.[17]
3.13
Other organisations suggested that the funding should be embedded within
the scheme, though again, independence remained a theme:
Blind Citizens Australia believes that advocacy should be
independent of service provision and an NDIA. In the current bill, there is no
reference to advocacy, in particular self-advocacy, which is vital in building
the capacity of people with disability to make their own decisions and to
question decisions. We recommend the inclusion of a clause in the general
principles to cover this.
NDIS will not address systemic barriers therefore there is a
need for systemic advocacy led by people with a disability for people with a
disability. Our members continue to report the barriers they are experiencing
in access to employment, access to public transport and access to acquiring
information in a format that matches their needs. Final legislation should
stipulate that an assigned percentage of total NDIS funding should be allocated
to independent advocacy support administered independently of the NDIA or
funding allocations sourced elsewhere.[18]
3.14
Bolshy Divas indicating that there needed to be a commitment to funding,
but that the service itself should be independent:
Senator SIEWERT: In other words, some funding support within
the NDIS but then still funded separately so that you have the independent
advocacy?
Ms Softly: Yes. The advocacy needs to be independent from the
system. I guess what I am saying is that the advocacy needs to be independent
so that it can be effective and real advocacy, but it needs to be funded from
somewhere.[19]
3.15
There was considerable concern that there might be an attempt to fund
individual advocacy from within individuals' support packages.
3.16
Queensland Advocacy was among many submitters who objected to advocacy
being funded through an individual's package. Its director Mr Wade commented
that 'I think it is essential that that advocacy continues to be delivered to
people without them having to find the money within their packages to pay for
it.'[20]
Amparo Advocacy Inc. didn't think it would be feasible to have advocacy funding
attached to the individual as you would not know how much they required:
I would like to know how they are going to work out how much
funding for advocacy they would give individuals. Firstly, you would not know
who would require advocacy, so ultimately then you would have to give everybody
funding for advocacy, to be fair. And you would not know whether the issue that
the person may have is an issue that an advocate could resolve within a few
weeks, or it may be an issue that could take several months, so trying to
determine how much funding to allocate individuals I think would be impossible.[21]
3.17
DANA concurred that they were also strongly against this approach
because it represented a fundamental misunderstanding of how advocacy works,
and is likely to work:
The scariest part I read, across those hundreds of pages, was
from you, Senator Boyce, in the Brisbane hearing: you reported FaHCSIA advice
that they were thinking of having advocacy funding come from within a
participant's fund and seeking responses from the witnesses there. That was a
clear indication of not understanding the full trajectory that an
applicant-participant will be going on, or the key role of advocacy in this
case prior to getting anywhere near the front door of the NDIA—a clear
misunderstanding of the role of advocacy with respect to a program like this.[22]
3.18
Subclause 6(1) of the bill allows for the agency to provide support and
assistance including funding for participants and prospective participants to
meet their obligations within the bill:
(1)The
Agency may provide support and assistance (including financial assistance) to
prospective participants and participants in relation to doing things or
meeting obligations under, or for the purposes of, this Act.
Note: For example, the Agency might assist a
participant to prepare the participant’s statement of goals and aspirations by
assisting the participant to clarify his or her goals, objectives and
aspirations.
3.19
The agency CEO – Mr David Bowen – described how he envisaged the support
to be provided to individuals and their families and carers. He added the
proviso that protections will need to be in place to avoid any conflict of
interest between those that provide the advice and those that provide the
services required:
The agency will have, either as employees or contractors,
local area coordinators and they can do some of that, but we also recognise
that under the legislation there is an obligation on the agency to ensure that
there are resources available to facilitate the preparation of a person's plan.
Our expectation is that that will become a developing service. We are aware
already of some service providers who want to step into that space, but on the
very clear understanding that you cannot do that type of plan facilitation and
then direct the person to your own service—there has to be a separation there.
We are expecting that to become a new area that that becomes part of it.[23]
3.20
The government's commitment to this kind of advocacy being funded within
the scheme did, however, appear to be limited. In the department's opening
statement for 5 March, the impression was given that this would be a marginal
function, rather than one central to the agency's responsibilities (emphases
added):
Some of the outcomes that Governments and people with
disability expect of the Scheme, such as developing and fostering local
networks of support for individuals and supporting decision making by people
with disability as far as possible to ensure that substitute decision making is
used only as a last resort, will mean that the Agency may on occasion
provide funding to advocacy organisations in the advocacy roles that do not
involve formally representing people with disability in appeals or reviews of
the Agency’s decisions. [24]
3.21
Advocacy Tasmania and Speak Out Association of Tasmania pointed out that
there is an existing model for statutory recognition and funding of advocacy,
in the Aged Care Act 1997.[25]
Under Division 56, that Act gives advocates certain rights of access to the
aged care system, by making it a legal responsibility of service providers:
to allow people acting for bodies that have been paid advocacy
grants under Part 5.5 to have such access to the service as is specified in the
User Rights Principles.[26]
3.22
Part 5.5 of the Aged Care Act establishes a system of advocacy grants.
It also addresses the issue of independence of advocates. Section 81-2 states
in part:
(3) A body may not make an application [for an advocacy
grant] under subsection (1) if it is:
(a) an approved provider; or
(b) a body that is directly associated with an approved
provider.
3.23
As outlined above, there was general concern about how advocacy services
would be funded under the NDIS. Developmental Disability Council of WA and
People with Disabilities WA considered the possibility that general advocacy
services could be funded by the agency through the mechanism provided by clause
14 of the bill. This is not entirely clear from either the bill or the
explanatory memorandum:
While we recognise that chapter 2 implies a whole range of
supports and services, as you will know from the legislation there is nothing
really in that chapter; it makes implications without really giving much
direction at all as to how that will be developed and put in place.[27]
3.24
When the department was asked about chapter 2 of the bill, it appeared
from the response that it was not intended to provide support for advocacy. For
context, the Productivity Commission had discussed a tiered approach to a
disability insurance scheme, and had described a 'tier 2' within that scheme:
Anyone with, or affected by, a disability could approach the
scheme for information and referral services (as distinct from funded support).
The scheme would also provide general information about the most effective care
and support options. This would include providing linkages and referrals to
relevant services for which the NDIS was not directly responsible, such as
mainstream services and community support groups and services.[28]
3.25
Explaining chapter 2 of the bill, the department responded using the
Commission's concept of tier 2:
Dr Hartland: The PC talked about a group of people and
provision called tier 2. This was for people who, but for an intervention,
might become tier 3, and develop an [individual service package]; or for a
broader group who needed referral and tapping into mainstream services. So
chapter 2 in the bill effectively allows the agency to either do, or fund
organisations to undertake, that range of activities that the PC described as
tier 2. We have not used the tier 2 language, in part because we did not use
the tier 3 language in the rest of the bill. It broadly covers that type of
activity.
...It is expressed differently to the rest of the legislation
because it is not an individual entitlement in the way that we wanted
individual support packages to be. It is expressed in a much more careful way.
We deliberately wanted to create certain entitlement for people who are
participants and need an [individual service package] but we did not want to go
that far in relation to tier 2. That is why the wording is slightly different.[29]
3.26
It appears therefore that the bill may recognise individual advocacy
through clause 6(1), in the context of supporting activities like the
preparation of participants' statements of goals and aspirations, but there may
not be an explicit mechanism for support of systemic advocacy.
The provision of legal advocacy
3.27
Clause 6(2) of the bill 'does not permit or require the Agency to fund
legal assistance for prospective participants or participants in relation to
review of decisions made under this Act'. There was criticism of this
prohibition. The Australian Human Rights Commission (AHRC) considered this
restriction to be unacceptable:
The Commission is of the view that consideration could be
given to the provision of paid advocacy support on a sessional basis for
participants or prospective participants making applications to the AAT. This
approach would promote the right contained in section 4(7) of the Bill
entitling people with disability the same rights as other members of Australian
society to pursue grievances. It would also be pragmatic and promote efficiency
as it would provide to a participant or prospective participant access to an
advocate who understands the NDIS as well as the prospects of success of a
particular request for review. This approach would be similar to the approach
adopted through the Department of Veterans Affairs Ex-Service Organisation
(ESO) Advocacy and Welfare Services.[30]
3.28
The Law Society of South Australia's approach was slightly different, recommending
that 'necessary and reasonable supports' could be defined to include legal
services.[31]
3.29
Victorian Legal Aid expressed its concern about the effect of clause
6(2). It argued that there needs to be funding of legal support for review of
decisions, though it would not have to be through the agency, and recommended
the removal of clause 6(2).[32]
3.30
On the other hand, Australian Lawyers Alliance did not raise a concern
with Clause 6(2). It noted that 'legal assistance can be provided by the
Disability Advocate Services which exist in each State or alternatively through
the private legal profession'.[33]
Committee view
3.31
A considerable amount of the concern about advocacy in the NDIS appears
to have arisen from the complete silence of the bill's text on the subject,
rather than from any explicit policy proposals that would marginalise advocacy
in any way. The committee accepts the department's assurances that the bill is
not intended to preclude advocacy, and that it is silent on the subject because
the government adopted the principle, expressed by most stakeholders, that
advocacy should be independent of the agency, so that advocates are able to
challenge agency decisions.
3.32
People with disability and disability organisations are not going to be
satisfied with the argument that the bill does not prevent advocacy.
They are seeking positive recognition of its place in the system. Although the
agency cannot provide independent advocacy on behalf of individuals, this does
not mean the bill should not mention it at all. The bill establishes the whole
NDIS, not just the agency, and as such there are options for recognition of
advocacy in the bill, and these should be pursued. The most obvious way to give
such recognition would be through inclusion in the general principles in clause
4, such as through amendment of existing subclause 4(12), which is about recognition
of supporting persons, or through a standalone principle recognising advocacy.
3.33
The committee has also noted that advocacy grants are explicitly established
under the Aged Care Act, as are rights of access for grant recipients. The
committee hopes that consistent principles are being applied between aged care
and disability care in respect of how advocacy is both recognised and funded.
Recommendation 7
3.34
The committee recommends that the bill be amended to recognise the role
of advocacy, and that the government consider as one option the amendment of clause
4 to recognise in the principles the roles of advocacy.
3.35
The committee notes that a right to be represented is not a requirement
that someone be represented, nor is it a right for that representation to be
funded through the agency. The committee is simply seeking recognition of the
role of advocacy, and a signal of the expectation that advocates would be
involved in many of the processes established by the bill.
Recommendation 8
3.36
The committee recommends that the government make an ongoing commitment,
outside the NDIS, to the funding of advocacy, noting the existence of advocacy
schemes across all jurisdictions, and that the need for advocacy is likely to
increase with the rollout of the NDIS.
Recommendation 9
3.37
The committee recommends that independent advocacy funding not be
managed by the Agency, and that clause 6(2) remains unchanged.
3.38
The committee discusses appeal mechanisms in chapter 7.
Meaning of 'person'
3.39
Several submitters were confused about the meaning of 'person' in the
bill, an issue raised in several contexts, but particularly clause 14. Early
Childhood Intervention Australia, and Novita Children's Services, for example,
both queried what role companies limited by guarantee, or incorporated
associations, could have in providing the kinds of services funded by the agency
and envisaged in clause 14.
3.40
Clause 69 provides that a person can apply to become a registered
provider of supports, but it was pointed out to the committee that unlike the
Victorian Disability Act the bill does not include a definition of 'a person'.[34]
New South Wales Disability Network Forum also called for clause 70 to be more
explicit in enabling the inclusion of DSO, mainstream organisations, personal
and informal supports and other entities to become registered providers of
supports.[35]
3.41
The confusion among submitters may arise because clause 14 includes
'persons or entities', and the bill defines 'entities' as partnerships or
unincorporated associations,[36]
yet contains no definition of person. As an added complication, in large parts
of the bill (particularly in relation to plans) the term 'person' logically can
refer only to natural persons. These different uses of terms in the bill may
have meant that many stakeholders are unaware of, and do not assume, that a
'person' has the meaning attached to it by section 2C of the Acts
Interpretation Act 1901, namely a 'body politic or corporate as well as an
individual'.
Recommendation 10
3.42
The committee recommends that the government provide clarification,
either in the bill or the explanatory memorandum, to ensure that those using
the bill will understand that, unless the contrary is clearly intended, a
'person' in the bill includes companies and other incorporated bodies.
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