This chapter examines the role and challenges of disability advocacy in
preventing and responding to violence, abuse and neglect against people with
This chapter highlights the importance of formal, informal and
self-advocacy models of advocacy, in assisting people with disability to
identify, report and respond to incidents of violence, abuse and neglect.
The Victorian Advocacy League for Individuals with Disability Inc.
(VALID), defines the roles of advocacy as to:
empower individuals through information, support & knowledge
of their rights
for community education
increase the quality of life of individuals and their families
make services accountable
address inequity of service provision.
VALID further defines the types of advocacy as:
- Individual Advocacy: to seek a solution with and for
people with disabilities to their particular problems or needs, so as to
enhance their rights and dignity.
- Systemic Advocacy: to influence the 'system' (e.g. the
policies and procedures of agencies/governments) to change in response to
people with disabilities and their families/carers needs.
- Self Advocacy: is about people with disabilities/ families
& carers, speaking up for themselves. Self-Advocacy services assist
consumers to develop or maintain the personal skills and self-confidence
necessary to enable them to represent their own interests in the community.
- Citizen Advocacy: Citizen Advocacy services recruit and
support individual volunteers from the community to assist i) persons with
disabilities, or ii) the families of, and other persons who provide care for
and assistance to, people with disabilities to represent their interests in day
to day life and the community.
- Group Advocacy: Group advocacy services facilitate
community organisations to represent the interests of groups of persons with
disabilities and/or their families/carers.
As noted above, the committee has also considered the delivery of formal
advocacy services, that is services specifically funded to deliver one or more
of these advocacy models for people with disability to enable them to 'participate
in the decision making processes that safeguard and advance their human rights'.
A key form of funding is the National Disability Advocacy Framework (Advocacy
National Disability Advocacy
In 2008, Australian, state and territory disability ministers endorsed
the Advocacy Framework. The Advocacy Framework sets out principles to guide the
provision of advocacy services with people with disability to achieve the
long-term goal that:
People with disability have access to effective disability
advocacy that promotes, protects and ensures their full and equal enjoyment of
all human rights enabling full community participation.
In June 2015, the Department of Social Services (DSS) launched a review
of the Advocacy Framework in anticipation of the full roll out of the National
Disability Insurance Scheme (NDIS). DSS sought submissions addressing the
principles, outcomes and outputs of the Advocacy Framework and any changes
The committee notes that the outcomes of this consultation process had not been
published prior to the conclusion of this inquiry.
National Disability Advocacy
The Australian Government provides funding to disability advocacy
services across all advocacy models at the state and local government level
through the National Disability Advocacy Program (Advocacy Program). The Advocacy
Program aims to provide people with disability 'access to effective disability
advocacy that promotes, protects and ensures their full and equal enjoyment of
all human rights enabling community participation'.
DSS submitted that the Advocacy Program:
...funds agencies to provide advocacy that works to uphold the
rights and interests of people with all types of disabilities, by addressing
instances of discrimination, abuse and neglect. This can be on a one-to-one
basis, with families, by addressing legal aspects or through systemic advocacy.
In 2014-15, DSS will provide around $16.5 million under the Advocacy
Program to 59 organisations across Australia, DSS noted that the Australian
Government, with the states and territories, are currently reviewing the Advocacy
Program to determine 'the elements of advocacy that will be funded by the NDIS
and how it will align with services delivered under the Advocacy Program.
In its submission to the review of the Advocacy Framework, the Australian
Cross (Disability Alliance) Disability Alliance noted that the Advocacy Program
is 'strengthened' by including all models of advocacy. However, the Disability
Alliance highlighted that the Advocacy Program is 'critically under resourced'
and urged 'significant investment to all Advocacy Program models of advocacy'
to deliver equitable access and representation of issues and to match the
increased demand for advocacy anticipated under the NDIS.
The committee also heard concerns about the financial impact of compliance
measures imposed on advocacy organisations funded under the Advocacy Program.
For example, Advocacy for Inclusion recommended removing the Advocacy Program 'compliance
We have an extremely onerous compliance system of external
annual audits. We are forced to spend thousands of dollars each year from our
unindexed funding on auditors, which for Advocacy for Inclusion equated to 6
weeks' [sic] pay for a front line Individual Advocate this year. However, there
is no funding support to keep up with the increasing demand for disability
advocacy at this time of great change and reform. This is a significant barrier
to efficient and effective use of advocacy funding to promote the rights of
some of the most marginalised members of the community.
The Disability Advocacy Network Australia (DANA) criticised recent data
released by DSS on the Advocacy Program that indicates that only three per cent
of issues managed by advocacy services were related to abuse. DANA suggested
this figure is 'much too low' and indicates that advocacy services funded under
the Advocacy Program are not reaching the most vulnerable:
...it does not give you the full picture. It only touches on
the people who manage to get through that process, and that will mainly be
people who are more articulate, who have more support and who have strong
families who will help them. It will not be the people who are the most
Australian Government funded
The Australian Government also provides funding directly to advocacy
peak bodies to provide systemic advocacy services. In February 2015, DSS
announced direct funding for five advocacy organisations:
People with Disability Australia;
Children with Disability Australia;
First Peoples Disability Network;
National Ethnic Disability Alliance; and
Women with Disabilities Australia.
DSS submitted that these organisations have been funded to:
...work independently on behalf of their members, and
collaborate on national and common issues as the National Cross-Disability
Alliance (the Alliance), focusing on improving the lives of all people with
disability. The Alliance will provide the Government with practical advice to
help improve policies and legislation impacting people with disability across
At the 2015 Budget Estimates, DSS clarified the relationship between the
Disability Alliance and the Advocacy Program, noting that data on systemic
advocacy issues collected by the Advocacy Program is shared with the Disability
Alliance 'to further support the Alliance in contributing to government
policies and reforms impacting people with disability, their families and
The committee notes that its previous inquiry into the 2014 DSS
tendering process heard concerns about the channelling of advocacy funding into
national peak bodies, and the impact on smaller, specialised advocacy services,
many of which were defunded. Some advocacy organisations that lost funding as a
result of the tendering process 'expressed concern about what they perceived as
the government's diminished regard for their role'.
The inquiry recommended:
...that advocacy support be considered a vital component of
community services in future funding arrangements and is given appropriate
weighting in funding assessments.
National Aged Care Advocacy Program
In addition to disability specific advocacy, the Australian Government
also funds the National Aged Care Advocacy Program (NACAP) to provide 'free,
confidential advocacy support and information to consumers or potential
consumers of Australian Government subsidised Home Care Packages and
residential aged care services'.
There are nine community-based NACAP organisations operating nationally:
one in each state and territory and two in the Northern Territory. DSS submitted
that in 2013-14, services under the NACAP undertook more than 3 400 advocacy
cases, handled more than 4 400 general enquiries, and provided over 1 400
face-to-face education sessions. NACAP organisations also received an
additional 20 per cent in funding to June 2015 to 'meet an identified unmet
demand for advocacy services, particularly in rural and regional areas of
DSS submitted that the Australian Government is currently undertaking a
review of Commonwealth aged care advocacy services to inform the government on
how individual advocacy services can best support aged care consumers to:
effectively interact with the aged care system;
better transition between service types; and
be empowered to apply informed decision making and actively exercise
State and territory funded advocacy
In addition to Australian Government funding, states and territories
also provide funding to advocacy organisations for particular advocacy services.
The Productivity Commission (PC) reports that in 2013-14 across jurisdictions,
Australian, state and territory governments spent $66.3 million on advocacy,
information and alternative forms of communication. This includes:
advocacy services to enable people with disability to increase
their control over their lives by representing their interests and views in the
information services to assist people with disability, their
carers, families and related professionals accessing information about
disabilities, specific and mainstream services and equipment; and promote the
development of community awareness; and
alternative forms of communication for people who are, by reason
of their disability, unable to access information provided in standard formats.
According to the PC, expenditure on advocacy services represents
approximately one per cent of the $7.0 billion spent by Australian, state and
territory governments on disability services in 2013-14.
The total expenditure on advocacy services for 2013-14 across jurisdictions is
outlined in Table 7.1.
Table 7.1: Real government direct service delivery expenditure on advocacy,
information and print disability services, 2013-14 ($'000)
Source: Productivity Commission, Report on Government
Services 2015, Table 14A.10.
As Table 7.1 highlights, the level of funding for advocacy services differs
across jurisdictions. For example, according to the Victorian Ombudsman's
report, the Victorian Department of Health and Human Services funds 24 advocacy
organisations and two resource units. In 2013-14, the Victorian Government
spent $4.8 million on advocacy, including $1.59 million for individual
Importance of formal advocacy
Overwhelmingly, submitters and witnesses highlighted the critical role
of independent advocacy in the quality and safeguarding framework for people
with disability to assist in identifying, reporting and responding to incidents
of violence abuse and neglect.
Ms Mary Mallett, Chief Executive Officer (CEO) of DANA, told the committee that
advocacy is the:
...crucial, critically important part of the whole process of
protecting, safeguarding and helping people with disability who are being
abused or have been abused to make a complaint or work their way through the
system and in the first place to protect people against some of the things that
Evidence to the committee highlighted that people with disability who do
not have 'natural support networks' or access to independent advocacy services,
particularly those with intellectual disability or communication support needs,
are more vulnerable to violence, abuse and neglect. Ms Christina Ryan, General
Manager of Advocacy for Inclusion told the committee:
One of the things we know is that about half of the people we
have worked with over time do not have natural support networks, so the
expectation that some nice family member who is handy will step in is wrong.
The expectation that there is access to an advocate is clearly wrong...We know
that. We knock back two people for every one we can assist. We also know that
people cannot rely on something falling out of the sky that is going to save
them. Most people just end up in these decades-long situations that are simply
unacceptable. That is just how it is. That is the life of people.
Witnesses suggested that advocates play an important role in assisting
people with disability access the available complaints processes to identify
and report abuse. Ms Michelle O'Flynn, Director of Queensland Advocacy Incorporated
(QAI) told the committee:
A complaints process, no matter how robust or stringent,
cannot possibly factor in all of the needs that the person has, and it is not
going to be something that a person who is intimidated and living in fear is
able to reach out for unless there is a way that they can seek assistance from
someone is trusted and removed from that setting. A lot of victims are not
going to feel that they can access a complaints mechanism. It trivialises the
notion of abuse as a mere complaint about service delivery. How can they do
that? Who will speak up for them and who can they turn to? We think that one of
the things that can help those people is access to advocacy. But where do they
get that? Unless they actually have a relationship with an advocate, that is
not going to happen.
The committee heard many individual examples of how independent
advocates have assisted people with disability in reporting and preventing
abuse. Boxes 7.1 and 7.2 highlight just two case studies that highlight the
important role of advocacy services in assisting people with disability.
Box 7.1: Role of advocates – Sienna's story
Ms Mary Mallett, CEO of DANA, shared the following case study with the committee that
highlighted the importance of advocacy services in assisting people with disability to identify and
Sienna lives in a regional town in Australia. She is 31; she is a young woman
with autism who lives in a group home at a significant distance from her
family. Sienna has what the staff call 'behaviours' when she is unsure and
frustrated about things and when she is not receiving appropriate support.
When the staff are busy or Sienna is having 'behaviours', they send her outside
and put her in the van. The staff and the rest of the residents are inside cooking
tea, having tea or whatever is happening, but Sienna is sent outside to sit in the
driveway in the van. She is not locked in, but that is immaterial. She is told not
to come out and so she sits there until she is told she can come out. The other
residents are encouraged to do exactly the same thing, so that the staff have
empowered the other residents to tell Sienna to go and sit in the van. They tell
her this is the consequence of her 'behaviours'.
Sienna accepted this for a while, and it had been going on for quite a long time
before the advocate got involved. She knew it was not okay, but she did not
know what to do about it. She contacted the advocate after one particularly
cold and rainy evening when she had been scared while sitting in the van in the
dark, the cold and the rain. It scared her enough that she finally thought that
she needed to do something about it. She made an appointment to see the
advocate. The interesting thing about this is that Sienna is a young woman who
attends the self-advocacy group—there happens to be one in that town—and so
she already knew the advocate. If she did not know the advocate already, it is
very unlikely that she would ever have made the move to do this. Even
knowing the advocate—already having the contact—it still took her a long
time to do something about it.
The advocate informs Sienna of her rights; they talk about the difference
between consequences and punishment and about restrictive practices. When
she asked Sienna what she wanted to do, she clearly stated that she wanted to
complain but was afraid. She asked the advocate to make the complaint and act
on her behalf. This was a complaint to the service provider; it was not outside
of that. The advocate went to the services practice development coordinator,
who immediately spoke with the staff and the residents. The other residents
confirmed this was happening. She told everyone the practice must stop
immediately. The advocate highlighted the need for the relevant resource team
from the department in that area to be involved. They had staff training about
restrictive practices and some specialised training for staff in effectively
supporting Sienna. These were all acted upon and the situation is now resolved.
There is a regular schedule for Sienna to report to that organisation's practice
coordinator. So Sienna's life is currently okay.
Source: Ms Mary Mallett, Committee Hansard, Canberra, 21 August 2015, p. 11.
Box 7.2 highlights that advocates are particularly important for elderly
people with disability with limited family supports.
Box 7.2: Role of advocates – Katrina's story
Mrs Sonia di Mezza, Deputy CEO of the ACT Disability, Aged and Carer Advocacy Service
shared the following case study with the committee that highlighted the importance of advocates
in assisting people with disability to report abuse:
I bring to your attention the case of a former client of mine, Katrina. She was a
frail old woman in her 90s who suffered from some mobility issues and who
lived in a residential aged care facility. One day Katrina went to the kitchen
area of the facility to make herself a cup of coffee. While she was there, a carer
approached her, shoved her in a corner and touched her in the genital region.
He mocked her and dared her to complain, saying that no one would believe
her and that he would be back to give her more. Katrina was shocked and
devastated by this. She was afraid to go anywhere in the facility and became
depressed. She told friends and family members about the incident, but they
encouraged her to forget about it and not to take the matter further. One friend,
who disagreed with this approach, encouraged her to contact ADACAS [ACT
Disability, Aged and Carer Advocacy Service]. I helped my client to make a
complaint to the management, as well as to the Aged Care Complaints Scheme.
The police were informed about the situation, but they would not progress the
matter further due to lack of evidence. Because she was frail, elderly, had poor
eyesight and had some cognitive impairment, she was not considered to be a
strong witness, and there were no other witnesses to this abuse. While all of
this was happening, the carer resigned from the facility. The perpetrator
managed to avoid any prosecution and potentially had the possibility of
working with other vulnerable people and potentially abusing them. My client
has passed away and sadly cannot talk about this incident with you. She was
adamant while she lived that she wanted the abuse she had suffered to be talked
about and addressed.
Source: Mrs Sonia di Mezza, Committee Hansard, Canberra, 21 August 2015, pp 33–34.
The Intellectual Disability Rights Service, an advocacy organisation in
NSW, submitted that '[p]eople who have been victims of abuse and who have no
family involvement should have access to an advocate or guardian external to
the service to support them and advocate on their behalf'.
Challenges for formal advocacy
Despite the importance of independent advocacy, the committee heard there
are number of challenges facing the delivery of advocacy services including:
access to institutions and residential settings.
According to the evidence, the key challenge for advocacy services is
the available level of funding. A number of submitters noted that disability
advocacy is 'severely underfunded, unable to meet current demand, with the
demand expected to at least double with the NDIS'.
As a result of the lack of funding, the committee heard that advocacy
services are often limited to providing reactive services responding to abuse,
and do not have capacity to assist in ongoing preventative support. VALID
Because of the limited supply of independent advocacy,
individual advocacy, including VALID's, has tended to become focused on
reacting to situations of crisis or high need, and has become less available to
people who need advocacy support in their day-to-day lives...without the
long-term, low-level form of advocacy support, many issues that might have been
easily resolved at an early stage tend to escalate and become major issues
demanding our crisis advocacy response.
The lack of funding also results in many people with disability being
turned away, or placed on long waiting lists for assistance. Ms Mallett told
A person who rang for advocacy in Sydney recently was told
the waiting list was a year. In actual fact most advocacy organisations do not
keep waiting lists, because they cannot; there is no point. If somebody is in a
crisis, you either can help them or you cannot. But what is the point of
putting them on a waiting list? What the organisations do is juggle: people who
have a critically urgent immediate issue leapfrog in over the top of everybody
else, because they have to get assistance. That is what happens.
Witnesses suggested that the lack of funding for advocacy reflects a
lack of value placed on these services, including other capacity building
services aimed at preventing abuse and neglect. Ms Taryn Harvey, CEO of
Development Disability WA told the committee:
I think the organisations that provide advocacy can help in
providing a range of other mechanisms. I do not think that advocacy is the only
thing; communication is another thing. But I think if we started to value
advocacy it would be a sign that we are starting to value the other things that
are effective in preventing these situations and in capacity building.
Evidence to the committee supports the findings of the Victorian
Ombudsman's 2015 report into reporting and investigating of allegations of
abuse which found that:
...there is a critical role for advocates to assist people with
disability; however, there is limited appreciation of the importance of this
role, manifest in its modest funding, as well as an inherent conflict in
advocacy services being funded by the department upon whom the recipients of
the service rely.
The committee notes the Victorian Ombudsman's recommendation for an
increase in funding for advocacy services informed by a comprehensive
assessment of the advocacy needs of people with disability.
Submitters and witnesses emphasised that for advocacy services to be
effective, they must be independent from the disability service organisations
that may be perpetuating the abuse or neglect.
Mrs Silvana Gant from Adelaide People First told the committee:
...it is absolutely vital that people in institutional settings
get access to real independent values driven advocacy support. That is not
advocacy that is provided by the service; it is absolutely separate from it. It
needs to be values driven. It needs to state very clearly what the advocacy
stands for and believes in. It needs to have a sense of purpose and direction.
There has to be a clear understanding of what advocacy is, because advocacy
gets confused with service provision, support work, mediation and counselling.
Adelaide People First recommended that the following definition of
independent advocacy be included in the Advocacy Framework:
To establish independence, an organisation or group needs to
have advocacy as its core activity and not to be a provider of any services,
especially the following: employment, accommodation support, personal care
support, independent living support, respite, vocational training, brokerage,
mediation, case management.
Advocacy for people with disabilities must be conducted by
organisations or groups which are able to demonstrate independence from all
actual, potential or perceived conflicting interests. Independence cannot be
indicated by the separation of services from advocacy within an organisation or
Similarly, JFA Purple Orange, a social policy agency for people with
disability in South Australia, highlighted the need for 'more proactive
independent form of advocacy' particularly for people with intellectual
Evidence to the committee supported the findings of the Victorian
Ombudsman's report into reporting and investigating allegations of abuse that
Advocacy services, and the funding of advocacy, should be
independent of all agencies involved in funding, regulating, or providing
services to ensure they can be truly fearless when standing up for the
Access to institutions and
Another significant challenge for advocacy services is having regular
access to institutions and residential settings to assist people with disability
in identifying and reporting abuse. JFA Purple Orange submitted that one of the
main challenges of formal advocacy includes 'difficulties accessing service
settings to observe what is occurring on a day to day basis'.
Similarly, Advocacy Tasmania noted that:
The benefits of advocacy within residential and institutional
settings require advocates to have access to, and a presence within, these
settings. This depends upon receiving sufficient funding to employ visible and
effective advocates, who are able to act and respond promptly to abuse and
The committee heard that the structure of current reporting mechanisms
that rely on individuals raising complaints present barriers to people with
disability if they do not have access to advocacy services or other supports. Ms
Taryn Harvey, CEO, Developmental Disability WA told the committee:
I think the current processes we have in place, where the
onus is on the individual to raise complaints—and we also see where members of
the workforce also want to raise issues of concern that they have—is that we do
not have the kind of structures in place that can support people to make
complaints successfully. When you have an individual who is feeling vulnerable and
their family is feeling vulnerable, it is very difficult to raise a complaint
of this significance within a service provider without support. If you are
someone who does not have the kind of informal support...then that becomes more
challenging again. Obviously there are the issues around how we are responding
to those complaints from a justice point of view. We know that there are
significant barriers to victims with disability of violence, abuse and neglect
having recourse to the kinds of processes that the rest of us would take for
The committee recognises the crucial role that formal advocates play in
assisting people with disability to identify and report violence, abuse and
The committee supports the view of many submitters that advocacy
services must be independent of disability service providers and must have
regular access to institutions and residential facilities.
The committee acknowledges that funding for formal advocacy services is
provided at the state, territory and Commonwealth level and that these funding
programs are currently under review.
However, the committee acknowledges that evidence from people with
disability and advocacy service providers indicates that advocacy is
underfunded and undervalued. The committee considers that advocacy services are
vital to ensuring people with disability have access to supports to assist them
to identify and report abuse.
The committee heard that self-advocacy is one of the most important
forms of advocacy, whereby people with disability are provided with information
about their rights and assisted to identify and report incidents of abuse and
Ms Sonia di Mezza, Deputy CEO of the ACT Disability, Aged and Carer Advocacy
Service told the committee that self-advocacy is 'just as important' as
We find, with the spectrum of clients we have, that some
people cannot communicate what they want and really need an advocate to help
them. At the other end of the spectrum, other people are extremely articulate
and we just stand next to them while they say what is wrong and what they want.
There is a whole range. It is very important that we recognise that we need
both self-advocacy and independent advocacy per se, and we need more funding
for that. There is definitely not enough, I understand. There seems to be very
much a push, in general, away from the word 'advocacy'. I am fearful that
perhaps the support that is needed in this area is becoming more and more
narrow. Both areas definitely need to be covered.
Role of self-advocacy
The committee heard that self-advocacy plays an important role in
teaching people with disability about their rights. Ms Christina Ryan from
Advocacy for Inclusion told the committee that in many cases, people with
disability do not feel they have the same rights as everyone else:
One of the most wrenching things for me—because we do the
training for people in self-advocacy and human rights—is when people ask us:
'Do I have the same rights as other people?' They know they are cut off from
the world and they know they are shut off. What they also know is that
everybody else has rights and they do not. Every time we talk about delaying
things, every time we do not respond, every time we do not have enough advocacy
funding and every time the national plan to reduce violence against women does
not actually do much for women with disabilities, we are reminding people with
disabilities that we do not have the same rights. We do not matter. It is as
simple as that.
Self-advocacy may also play an important role in assisting people with
disability to identify abuse and inappropriate behaviour. Ms Michelle Moss,
Project Manager from the Queenslanders with Disability Network told the
I think there is some really important work that needs to be
done about how we ensure that people with disabilities can understand that what
is happening to them is not okay, and the support and education that needs to
happen so that people do have a language and people do have a frame of
reference, because historically we know that that has not been recognised and
given to people. They do have the right to an education about sexual and
In particular, witnesses highlighted the need for education for women
and girls with disability about domestic or family violence. Ms Margie
Charlesworth, Convenor of Women with Disabilities in South Australia told the
It was somewhat startling to realise that there are many
women with disabilities who do not always recognise or understand that they
have been or continue to be victims of domestic violence and abuse. In the
early stages of hosting these workshops, women were hesitant to attend them
alone. They needed to bring someone with them who represented safety. I
remember one young woman who did not contribute much. It was only when I read
her feedback form that I realised how much these workshops meant to those who
participated in them. Her comment was simply: 'I never knew that what I was
experiencing was violence and that it was wrong.'
Availability of self-advocacy
Submitters and witnesses suggested that across jurisdictions, the
availability of self-advocacy services is limited. Ms Aine Healy from the NSW
Council for Disability told the committee:
The availability of self-advocacy for people is very limited.
Victoria has some good networks and Tasmania has as well for people with
intellectual disability. There are only one or two groups in New South Wales,
so it is funded in a very ad hoc way across Australia. Again, that affects
people's ability to speak up.
A survey conducted by DANA of disability advocates to provide to DSS on
the proposed quality and safeguarding framework, indicated that many people
with disability do not have access to self-advocacy training and programs:
Time and time again, what the advocates are telling us and
what they see is that people do not complain—for many reasons. In the first
place, they do not know their rights. They do not know they have a right to
complain, and one of the few groups who educate people with disability about
what their rights are is advocacy organisations...That really important arm of
advocacy, which is self-advocacy by and for people with disability themselves,
almost does not exist. It is done off the side of the desk mainly. Advocacy in
general is badly funded; self-advocacy has nothing really.
Government funded self-advocacy
A number of witnesses highlighted that the model of self-advocacy
funding in Victoria provides a possible best practice model for other
jurisdictions. In 2007, the Victorian Government funded the establishment of
the Self Advocacy Resource Unit (SARU) (see Box 7.3).
Women With Disability Victoria submitted that the SARU model:
...has demonstrated the power of supporting self- advocacy.
SARU support a range of groups which are run by, for example, people with
Acquired Brain Injury, people with intellectual disabilities, and people with
intellectual disabilities who have lost their children through child
protection. Members of these groups work together, setting goals, running
forums, sharing information, meeting with government representatives, and
Box 7.3: Victoria - Self Advocacy Resource Unit
The SARU was established in 2007 and is funded by the Victorian Department of Human
Services. The role of the SARU is to 'resource and support self advocacy groups run by and for
people with intellectual disabilities', including people with high communication support needs.
In its submission to the review of the National Disability Advocacy Framework, the SARU noted
that its key functions are to:
- strengthen and build the capacity of existing self-advocacy groups;
- support the establishment of new groups;
- promote Network Development;
- develop resources materials to support self-advocacy; and
- describe and improve advisor practice.
The submission suggested that the SARU model has 'proven highly successful in reinvigorating
self-advocacy across Victoria' and increasing the number of self-advocacy groups, including two
According to SARU, a 2012 evaluation of the model found it was 'a highly efficient and effective
means of supporting groups to develop and grow'. The SARU also enables self-advocacy groups
to be linked with local advocacy services.
Source: Self Advocacy Resource Unit, Submission to the Department of Social Services Review of
the National Disability Advocacy Framework, July 2015, https://engage.dss.gov.au/ndaf-2/publicsubmissions/
(accessed 28 October 2015).
Ms Mary Mallett told the committee that the SARU is one of the key
reasons self-advocacy is more prominent in Victoria than other jurisdictions:
It happens relatively well in Victoria because the Victorian
government fund a small self-advocacy resource unit. It is the only one in the
country and it makes a big difference in Victoria. It is one of the reasons
self-advocacy exists much stronger there than anywhere else and almost not in
the rest of the country.
Disability service provider funded
A number of disability service providers noted that they provide some
form of self-advocacy training for people with disability.
For example, Optia, a disability service provider in Tasmania, noted it works
with a government funded self-advocacy organisation, Speak Out Advocacy, to
deliver self-advocacy training:
Optia has partnered with Speak Out Advocacy to deliver a
self-advocacy program, Road to Success, designed to increase confidence and
self-determination of clients. The program includes a number of workshops run
by an advocate and a peer (self-advocate) and covers topics including
self-expression, self-confidence, self-determination, self-reliance,
self-development and self-esteem. This program, piloted in 2013-14, is being
expanded across the whole organisation this year (2015).
Similarly, the Endeavour Foundation, a disability service provider in
Queensland, submitted that it has established a 'Community and Advocacy Support
Unit' to support self-advocacy and leadership development. This includes a peer
education service to provide information about the NDIS for people with
intellectual disability, funded by the NDIS Practical Design Fund:
Self-empowerment and leadership development were integral
parts of the program for the peer educators and the improved confidence of the
individuals involved in the project was remarkable. The peer educator model
used for this project has now been taken up by Queenslanders with Disability, a
prominent network of people with a disability, who with initial support from
the Community and Advocacy Support Unit and Queensland State Government
funding, have continued to make these workshops available for Queenslanders
with an intellectual disability.
In Victoria, Professor Jeffrey Chan told the committee that Yooralla has
also implemented a self-advocacy program called the 'Life Skills Speaking Up'
The program, consistent with the latest literature, has four
modules. It is about self-protected behaviours and understanding your rights
and how to exercise your rights. It has a module on how to speak up if you feel
that you can identify abuse. Fourthly, there is a module on how to make a
The program was delivered to more than 200 individuals with
varying levels of cognitive impairment, including those who use the augmented
communication device that you have referred to. One of the things that we have
learned after delivering to more than 200 participants is that a group of them
decided that they wanted to meet and to continue to meet and they formed their
own self-advocacy group called the YES group—which is Your Enquiries Solved.
That group is chaired by two people with intellectual disability, and my team
supports them. They go out and meet on a regular basis. We intend to roll out
that program consistently across the organisation.
However, some submitters raised concerns about self-advocacy programs
run by disability service providers. Adelaide People First, an advocacy
organisation in South Australia expressed particular concerns that these
...institutionalised, tokenistic "self advocacy"
programmes or committees and/ or so call "independent advocates" where
the service provider controls people's access to information, peer support and
real independent, advocacy support.
Adelaide People First evolved from Self Advocacy for Intellectually
Disadvantaged People SA Inc. (SAID), a self-advocacy group established by a
disability service provider in South Australia in the 1980s. Adelaide People
First submitted that their past experience indicates that self-advocacy
programs run by disability service providers 'fails to address the power
imbalance between people with lived experience of intellectual disability and
institutionalised disability service providers controlling our lives':
Our lived experience at SAID Inc., was one of being labelled,
having low expectations and institutionalised thinking applied to us
individually and collectively. We had our access to information controlled by
the disability service providers and the Co-ordinator without disability within
SAID Inc. We were segregated and isolated from people or organisations the
disability service system and Co-ordinator without disability didn’t want us
having contact with and congregated or grouped together and treated all the
same. This exposed us to abuse, discrimination, intimidation, victimisation,
sexual harassment and exploitation.
Access to self-advocacy
Where self-advocacy programs are available, the committee heard
particular concerns from advocacy organisations that people with disability are
prevented from accessing their services, often by disability service providers.
Ms Christina Ryan, General Manager of Advocacy for Inclusion told the
People told us quite clearly that they are being prevented
from participating in the activities that they choose to participate in.
Somebody wants to participate; they want to come to a course that we are
running or the self-advocacy group on a regular basis, and it is just made
impossible for them to be there. Something always turns up, or they do not get
their mail. A good half of people do not get their own mail despite the fact
that providers will deny that until they are blue in the face—including
government providers, which is very disappointing.
Ms Mallett suggested that disability service providers deliberately
limit access to self-advocacy services:
Services who do not give the person the letter inviting them
to the self-advocacy group meeting because they do not want to know that it is
on. They make sure that the van is being used for something else that night so
that they cannot get people to the meeting. There are many ways a service can
Ms Ryan noted that by preventing people with disability accessing
self-advocacy training, service providers and guardians are perpetuating a form
There are some vicious perpetrators out there; let us
acknowledge that. We know that. We have heard some appalling stories. But there
are also people who are incredibly controlling and protective to the point of
smothering people with the very, very best of intentions. What they are doing
is perpetuating a form of abuse which would not be acceptable to any other
member of the community. It is a very difficult space in that regard. We simply
have to provide opportunities for people with disabilities to articulate
independently. We often find this with advocacy, when we are able to sit down
with a person. We are doing one-on-one training at the moment around
self-advocacy and preplanning with people in group houses. About half the
people we are currently working with are not allowed to just sit down with our
training staff. They have to have their guardian or their support worker or
their family member sit alongside them just to make sure.
Senator McLUCAS: Just to make sure of what?
Ms Ryan: Exactly! Good point. We know from working
with people individually over the years through individual advocacy that they
often say stuff to us that they would never say in another space if the person
was present. It is a bit like teenagers talking when their parents are there.
You are not going to say all these things. You need to be able to say
something. You want to test drive it. Often it is because the person does not
want to upset the people that care about them. They do not want to say, 'All of
this hard work you've gone to to get me into this house that I hate living in;
I would rather do something else. I do not want to be saying that. It's
upsetting.' So they do not say it. But the reality is that they are forced into
an environment they do not like.
The committee recognises that self-advocacy services play a vital role in
providing people with disability with support and training about how to
identify and report abuse. In particular, self-advocacy services provide
education about human rights and appropriate behaviour that are integral in
assisting people with disability to understand what abuse is and how it can be
The committee acknowledges that the Victorian model for funding
dedicated self-advocacy services provides a good example for other
The committee is deeply concerned by evidence that suggests that the
availability of self-advocacy services is limited across jurisdictions. The
committee is particularly concerned by evidence that suggests people with
disability are actively prevented from accessing self-advocacy services. The
committee considers that all people with disability in institutions and
residential settings should have access to independent self-advocacy training
'Informal advocacy' refers to individual advocacy for people with
disability undertaken on a voluntary basis, usually undertaken by a family
member or friend.
Submitters and witnesses highlighted the important role informal advocates have
in assisting people with disability to report incidents of abuse and neglect. JFA
Purple Orange submitted that:
Many people living with disability only have people in their
lives who are paid to be there; potentially it could be these people who are
perpetrating the violence or abuse. Without an informal network of support
around that person it is highly unlikely that their voice will be heard.
Formal recognition of informal
The committee heard strong support for increased recognition of the role
of informal advocates in the decision-making process for people with
disability. Ms Sue Ash AO, CEO of UnitingCare West noted that while formal
advocates work within legally designated frameworks such as the guardianship
system, there is no similar framework recognising and regulating informal
...the issue for many people is that the formal systems have
safeguards and quality frameworks. What I think we need to advocate for and try
to establish is that, alongside of that, we have a community education process
where families and others learn about not just their rights but what it means
to keep a safe environment, particularly for some of those groups of people who
I think are emerging groups.
Evidence from family members and other informal advocates suggested that
the lack of formal recognition of their role means they are powerless to
challenge or influence decisions made by disability service providers. Ms
Cheryl McDonnell detailed a range of ways in which her expertise in caring for
her daughter was disregarded by the service organisation, and she was not able
to provide care instructions:
as advocate lauded for being such a good advocate for her daughter, then
treated as if she is a trouble maker, stupid, or crazy. Written care plan
provided by family was ignored by staff. One staff member refused to read it as
it was not written by a nurse. The care plan was written by Terri’s mother
following [years] of consultations with educators, health and rehabilitation
experts. Verbal instructions as given by Terri’s mother were ignored. 
Ms Julie Pianto, who alleged that her son experienced abuse in a
supported residential facility managed by the EW Tipping Foundation in
Victoria, told the committee that parents who advocate for their children are
'demonised' by disability organisations:
...one other insidious form of abuse inflicted by these
organisations is that parents advocating for their loved ones are demonised,
lied about and generally labelled as being difficult, argumentative or worse.
Informal advocacy in guardianship
A key concern raised by multiple submitters, is how the lack of a
legally recognised or defined role affects the capacity of informal advocates
to participate meaningfully in the guardianship process. As discussed in
Chapter 4, the committee heard concerns that legal guardians do not always act
in the best interests of the person with disability when making decisions on
their behalf. In some concerning cases, disability service providers may apply or
threaten to apply for guardianship for clients due to disagreements with family
members about care or treatment.
Evidence to the committee suggested that in Queensland, informal
advocates, particularly family members, are often excluded from participating
in the process to determine guardianship for people with disability. QAI
Bureaucratic processes...exclude informal advocates and family
members from guardianship status (by which they can formally participate and
have a voice in proceedings affecting a person with disability). In particular,
in guardianship proceedings before the Queensland Civil and Administrative
Tribunal, service providers are often successful in arguing for the formal
removal of a person’s familial or supportive network from the guardianship
The committee heard many examples of cases where informal advocates were
excluded from the guardianship process. For example, Ms Sharon Richards, acting
CEO of Advocare, a human rights and advocacy organisation in Western Australia,
told the committee of one example where guardianship for a woman with cognitive
impairment was transferred from her children to the service provider due to
disagreements over medication:
...[she] liked to remove her clothes from her wardrobe, fold
them and leave them on her bed. The facility responded to this by having locks
put on the wardrobe. She became agitated, and her behaviour became more
difficult to manage. The facility wanted to sedate her to reduce the agitation,
but her family wanted them to investigate alternative methods. They were
reluctant. When an accommodation or agreement could not be made, the
institution went to the state administrative tribunal, and the family were
removed as guardians and a public guardian appointed. The woman now resides in
a mental health facility. According to her family, her capacity to deal with
anything is very reduced and she is being heavily medicated. At no time did the
facility actually try any alternative methods to deal with this lady's
Ms Richards further noted that in this case, the evidence provided to
support the guardianship application on medical grounds was not provided by a
medical practitioner, and yet the application was still supported:
We were all completely astonished that that guardianship was
removed from the family because the family were incredibly supportive and
really behind their mother and looking after her. For it to be turned over and
the woman to be medicated—we were shocked. We believe that one of the things
that actually happened—although we were not at the hearing, we had
teleconferenced in—was that a person who was represented as an expert gave
evidence that the lady had had a psychotic episode. In actual fact, it turned
out the person who had said this was a cert III care worker off the floor. It
was not a doctor, so the evidence or the information that was given really was
Witnesses suggested that there should be alternative options for families
and disability service providers to deal with decision-making and disputes,
rather than applying for formal guardianship. Professor Richard Bruggemann, the
Disability Senior Practitioner in South Australia (appearing in a private
capacity), told the committee:
I was always of the view that you do not go to the
guardianship board if you can avoid it. When you have got a fight with mum and
the organisation, fix the fight but do not go to the guardianship board. You
will create enmity. I can remember one guy engineered to go away with his
girlfriend on a trip and mum found out about it. He was going on trip to Cairns
but he did not tell his mum that this young lady was going to Cairns. They did
quite a good job of organising this. Then one of the staff members innocently
said, 'I hope they have a nice time when they're away,' and mother exploded:
'This tart who wants his money!' and blah, blah, blah. One [of] my workers
said, 'He's got a right to go. We should go to the guardianship board.' And his
mum said, 'If he goes, he can live somewhere else.' We did not have anywhere
else for him to live, and it was a good relationship. So you do not go to the
guardianship board. You fix that up. You say to the mother, 'What are you
scared about? How do we deal with that? How do we support you? What are the
things he could do that you feel comfortable about? Okay, let's do that and
see, when that works, what the next step is.' We often race to guardianship,
when I think that there are other options. That is about the best advice I can
give you. All I know is that it is difficult.
In cases where guardianship is transferred away from family members, the
committee heard that informal advocates have limited recourse to continue to
advocate for the best interests of the person with disability. Where they
attempt to do so, service providers may use the lack of formal legal authority to
limit the informal advocate's access to the person with disability. Representatives
from Speaking Up For You, an advocacy service in Queensland, told the
Families reported that when they made a complaint to the
service provider they were discredited and in some cases were denied access to
the family member. In some cases the service provider made application to QCAT
[Queensland Civil and Administrative Tribunal] and their family member was
replaced by a public guardian. SUFY [Speaking Up For You] wrote to the
director-general of Disability Services about the complaints and we did not
receive a reply from him. We met with the public guardian about the complaints
raised by the family. The public guardian was aware of the service; however, he
said that he could not investigate the concerns we raised unless there was a
person residing at the respite facility at the time of our complaint, and there
Witnesses and submitters supported formal recognition of informal
advocates in the guardianship process. QAI suggested:
QAI acknowledges the significant value of informal supports
for a person with a disability and calls for informal supporters to be accorded
greater respect and status, as well as formal recognition within bureaucratic
However, evidence to the committee also emphasised that the views of
informal advocates should only be recognised where they are acting in the
interests of the person with disability. For example, Professor Richard
Bruggemann told the committee of one example where a person with disability was
denied medical treatment by his family:
Are parents the ideal guardians? In many instances. Usually.
But there was a guy who lived at Strathmont Centre. He had testicular cancer;
aged 42; highly treatable; nine out of 10 people survive. We took him to the
doctor. The doctor suggested a course of treatment. We went to the family and
said, 'Here is what the doctor would like to do'. And the family said, 'No, he
has had a good run. Let him die'. And we went to the guardianship board, and
miscued—because what we should have gone there for was not to have the
treatment approved but to change the guardian. We went to the district court to
appeal it, and they appointed the public advocate as the guardian. He then
approved the course of treatment. We wrecked our relationship with the family.
They would not speak to us. There was almost a fight on the lift. And then the
guy died. He was one of the one in 10.
Similarly, the Tasmanian Government noted examples where guardianship
was transferred from families to ensure the wishes of the person with
disability may be met:
A 93 year old man with dementia was deprived of contact with
his female companion of many years when an aged care facility acted on
instructions from the man's family who did not approve of the friendship (but
contrary to the resident's wishes). When a guardian was appointed and contact
was resumed, the pair had been separated for 12 months.
Guardianship: transitioning to
The committee heard concerns about the role of families in the
decision-making process for people with disability under guardianship orders
once they turn 18 years old. Ms Mary-Lou Carter of Our Voice Australia
described the situation that many parents faced:
When our children turn 18, we as their parents have
absolutely no authority whatsoever-no legal standing. I was told that in no
uncertain terms in black and white by Robert McClelland when he was the
Attorney-General back in 2008. I wrote to him specifically with that question.
'Do I have any legal authority?' He told me no. It makes families so anxious,
particularly as their children approach that magical majority.
Submitters and witnesses expressed concern that to retain the legal
capacity to seek information and direct care for children with disability, families
have to apply through a tribunal or court for guardianship of their children
once they turn 18 years old. Witnesses from Our Voice Australia told the
There has to be an easier way than going to the guardianship
tribunal and having complete strangers judge us on whether we are capable and
looking to the best interest of our children. It is just appalling to be in
The NSW Public Guardian told the committee that some jurisdictions have
considered options for streamlining the guardianship process when a child with
disability turns 18, but the issue remains unresolved:
Attorneys-general across Australia have been in receipt of
representations from various groups suggesting that, when a person reaches the
age of 16 or 18, where their family have been their key source of support
historically, there would be some sort of automatic or streamlined conversion
of the parental responsibility into guardianship. I know for example that the
Victorian parliament considered that issue. But to my knowledge none of the
parliaments in any of the jurisdictions has actually agreed.
Aboriginal and Torres Strait
Islander people with disability
As discussed in Chapter 4, The North Australian Aboriginal Justice
Agency (NAAJA) highlighted that in the Northern Territory, Aboriginal and
Torres Strait Islander peoples are significantly overrepresented in the number
of people on adult guardianship orders, with 50 per cent of people subject to
guardianship orders identifying as Aboriginal.
NAAJA noted that the number of people under guardianship in the NT is eight
times more than the next highest jurisdiction (NSW).
NAAJA expressed concern that:
Intellectually disabled Aboriginal people in remote
communities are particularly vulnerable to abuse and neglect because of a lack
of services and support. There is a critical lack of disability services for
Aboriginal people in remote communities and a lack of support and education for
families and community members to assist them to care for disabled family
NAAJA provided the committee with case study examples that highlight
that Aboriginal people under guardianship orders are not adequately protected
and require specialist advocacy support (see Box 7.4).
Box 7.4: Case study – adult guardianship for Aboriginal and Torres Strait Islander people
Ms M has an intellectual disability, multiple medical conditions and comes from a remote
community. Following a recent medical procedure, she is required to take medication once a day
for the rest of her life. She cannot return to her home community because she does not have the
capacity to monitor her own medication intake and the clinic there does not have the resources to
provide this service. She has no family and nowhere to live outside her community and has to stay
in hospitals as there is no suitable supported accommodation.
NAAJA noted that Ms M did not have capacity to give consent to the procedure and was not
provided a support person or interpreter. The Office of the Public Guardian (OPG) has been
appointed her guardian to make decisions about where she lives and her day to day medical care.
However, NAAJA noted that OPG 'does not have the resources to act as an advocate' and was
unable to assist Ms M during a recent medical procedure:
…on her own in the hospital, without an advocate or caseworker, she was
neglected and vulnerable. At one point when she left the hospital to be with her
partner it was assumed she was out drinking (she does not drink) and this lead
to a misunderstanding that she was refusing treatment and 'non compliant'. At
another point she was almost discharged back to a smaller hospital without
having the operation required. Ms M has had this operation but is still in
hospital waiting for a placement in supported accommodation.
Ms N was the subject of a report by the NT Health and Community Services Complains
Commissioner in February 2014. NAAJA noted that the Public Guardian and two family members
had been appointed as Ms N's guardian and there had been 'clear and consistent warnings about the
neglect, physical and sexual abuse and ongoing suffering of Ms N that various government
agencies had not acted upon'.
The Commissioner found that the Public Guardian, the Department of Health and other health
service providers (such as the local clinic) were aware that Ms N was vulnerable and unable to
care for herself. It was also evident that her family was not coping with her high care needs and
was not getting the support they needed. The Commissioner found that all services involved in Ms
N's care and daily life 'failed to protect her, to ensure her safety, and to promote her wellbeing, her
dignity and her place in the community'.
Source: NAAJA, Submission 138, p. 10–12.
Ms Pip Martin, Managing Solicitor from NAAJA, told the committee of the
importance of advocacy services for people under guardianship orders:
...the lack of coordinated service provision for people who
have intellectual disability means that we see people who are falling through
the cracks. People who are even under the management of the Public Guardian are
not individually case managed, so certain problems arise. We would recommend
individual disability advocates to case manage people who are under the Public
NAAJA expressed concern that in the Northern Territory:
...even when the Public Guardian is appointed there is no
guarantee that a person is protected from financial or physical abuse. There is
a clear need for an independent disability advocate for each person under
guardianship and without such an advocate, there is a risk of that person
suffering neglect and abuse.
The committee affirms the view that the focus for all policy and
practice must be centred on the person with a disability. The committee also recognises
the vital role played by informal advocates, including families, in
safeguarding people with disability against violence abuse and neglect.
Evidence to the committee highlighted concerns that informal advocates
are not recognised under most existing legal frameworks, particularly in
relation to guardianship decisions. Further evidence to the committee suggests
the views of informal advocates are often overridden by those of disability
The committee recognises the need for greater legal recognition of the
important role informal advocates can perform in the decision-making process
for people with disability. The committee considers that there should be
mechanisms in place to allow informal advocates to assist people with
disability, particularly those with intellectual disability and cognitive impairment,
to raise allegations of violence, abuse and neglect.
As discussed in Chapter 4, the committee is deeply concerned by evidence
that suggests that disability service providers may use guardianship orders to
circumvent the advice of informal advocates. The committee does not think it
appropriate that service delivery organisations can also hold the threat of guardianship
orders over their clients.
The committee emphasises its support for the establishment of a
supported decision-making model for people with disability that recognises the
role of informal advocates. The committee considers this model is integral to
safeguarding people with disability against violence, abuse and neglect.
The committee also recognises that informal advocates are not recognised
in the decision-making process for adults with disability. The committee
supports streamlining this process to enable family members to have a
recognised role in decision-making, without having to apply for formal
guardianship, consistent with a supported decision-making model.
The committee is particularly concerned by evidence that Aboriginal and
Torres Strait Islander peoples are over-represented in the adult guardian
system, which leads to them not getting individualised support. The committee
considers that special consideration must be given to how to provide individual
case management support for
Aboriginal and Torres Strait Islander people with disability.
Advocacy under the NDIS
The committee heard strong support for increased funding for all models
of advocacy during and after the transition to the NDIS. Advocacy for Inclusion
People with disabilities need long-term support to build
self-advocacy skills, and they also need independent individual advocacy
support in the highly likely instance that regardless of their self-advocacy
skills, other people continue to exert power over the person's life.
Specific advocacy support for engaging with the NDIS on individual
support packages is discussed in detail in Chapter 9.
In February 2015, the Australian Government, together with states and
territories, launched a consultation process for the Information, Linkages and
Capacity Building (ILC) policy for the NDIS (formerly known as 'tier 2'). The
...a key component of the NDIS insurance model and will
contribute to the sustainability of the NDIS by building the capacity of the
community, people with disability, their families and carers which in turn will
reduce the need for funding of supports for people with disability through
Individual Funded Packages.
In April 2015, the Council of Australian Governments’ Disability Reform
Council considered the findings of the consultation process and agreed that in
relation to advocacy, the NDIS would fund:
safeguard supports; and
capacity-building for participants, including support to approach
and interact with disability supports and access mainstream services.
The Disability Reform Council agreed that systemic advocacy and legal
review and representation would be funded outside the NDIS. DSS noted that this
is consistent with the 2011 PC Inquiry Report into Disability Care and
Support, which recommended that advocacy be funded and provided outside the
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.
The resultant ILC Framework published in August 2015, acknowledges that
the NDIS 'has an important role to play in providing decision-making supports
and building individual capacity for people to advocate for themselves
DSS submitted that the Commonwealth government together with states and territories
is 'working through the elements of advocacy that will be funded by the NDIS
and how it will align with services delivered under NDAP [Advocacy Program]'.
Transition to NDIS
A number of submitters and witnesses highlighted that funding for advocacy
services was not included in the draft NDIS Quality and Safeguarding Framework
These submitters and witnesses strongly recommended that advocacy be considered
central to the safeguarding framework for the NDIS. Ms Colleen Pearce, the
Victorian Public Advocate, told the committee that funding for advocacy should
be central to the NDIS safeguarding framework:
My recommendation is for the Commonwealth government to
commit to funding an advocacy program as a crucial NDIS safeguard. Such
programs and funding should remain separate from any of the funding provided to
the NDIS participants.
Ms Aine Healy noted that the NSW Council for Disability's recent
consultations for DSS on the proposed quality and safeguarding framework found
...people said that having the opportunity to come together and
talk about what is available and what is not and about practising your skills,
being able to speak up, learning from other people et cetera would be really,
really useful—having resources to do that stuff. But it is not available in an
ongoing fashion. People said they would like to be able to build a relationship
with a trusted organisation in one regional area. People told us: 'I like that
I can drop in and out of that advocacy service. I haven't needed to use them
for a few years, but when something comes up I know I can go in there, and I
know I can do that.' Definitely some sort of block funding would be useful so
that people can provide a basis for systemic work and for individual work as needed,
because you are not always going to be able to pick when you might need
The committee notes many of the submissions to the NDIS Quality and Safeguarding
Framework highlighted the absence of independent advocacy services. For
example, Women with Disability Australia and People With Disability Australia's
submission to the framework noted:
The proposed framework does not focus on the critical role of
DPOs [Disabled Peoples Organisations], independent advocacy or disability
support organisations (DSOs) in ensuring quality and safeguarding for people
with disability. Yet, NDIS participants as well as those who are not NDIS
eligible will need increasing support to navigate and adapt to the new service
environment; government will still need consultation mechanisms to develop and
implement effective policy; and independent voices will be needed to ensure
that the market for disability supports grows in a way which promotes human
Women with Disability Australia and People with Disability Australia
DPOs, independent advocacy and DSOs should continue to be
block funded and receive increased recognition that they remain fundamental to
quality and safeguarding for people with disability.
Evidence to the committee supported the findings of the Victorian
Ombudsman's report that 'the role of advocacy will need to be strengthened
further with the introduction of the NDIS'. The Victorian Ombudsman noted:
It is not viable for advocacy to take a secondary position in
the safeguards framework. I consider advocacy to be key in a framework for
Victorian people with disability who have no prospect of becoming empowered
consumers and have no family or friends to voice their best interests.
Some submitters recommended the introduction of an advocacy program
independent of the NDIS, to ensure that advocacy services are adequately
funded. For example, VALID in Victoria recommended an independent program to
fund systemic and individual advocacy:
VALID believes there is a need for a strong and robust
independent advocacy program that provides various forms of advocacy including
responsive as well as proactive strategies for identifying and addressing
systemic abuse and neglect. Funding is also needed for individual and systemic
forms of advocacy. This program needs to be funded to match demand from both a
population growth perspective and a program demand perspective as the NDIS
expands supports to a larger number of people with disabilities. Severe
underfunding of independent advocacy can lead to cases of abuse and neglect
going unaddressed as advocacy organisations build waiting lists for support. I
think even in the transfer of some of the state advocacy funding to the NDIA
there is a risk of losing some of the advocacy funding that is already in the
Submitters also highlighted the need to ensure self-advocacy services
are adequately funded under the NDIS.
The committee recognises the significance of formal advocacy,
self-advocacy and informal advocacy services in assisting people with
disability to identify and report violence, abuse and neglect.
Evidence to the committee suggests that there is a strong support for
increased funding for formal advocacy services and self-advocacy training, and
greater recognition of the important role played by informal advocates particularly
under the NDIS.
The committee recognises the need for continued funding for all forms of
advocacy during and after the transition to the NDIS. The committee supports
the recommendation of the Victorian Ombudsman that funding for advocacy
services should be increased, based on a fulsome assessment of the need across
jurisdictions. The committee considers that this recommendation should be
central to the Australian Government's current review of the Advocacy Program.
The committee considers that advocacy must be central to the quality and
safeguarding framework for the NDIS. The committee considers that an independent
advocacy program that funds all forms of advocacy services, such as the Advocacy
Program, should continue under the NDIS.
While acknowledging the Australian Government is reviewing all aspects
of advocacy funding, including the Advocacy Framework and the Advocacy Program,
the committee is concerned by the current lack of detail on which advocacy
services will be funded under the NDIS. In particular, it is not clear how
systemic advocacy, which falls outside the NDIS framework, will be funded.
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