Family advocacy involves family members acting on behalf of a son or daughter or sibling so that they can have the best possible life. However, as we all know, sometimes there are systemic barriers in the way. These barriers might be government structures, policy or practices, the systems and actions of disability support providers, or the failure of mainstream social structures and services to include our family members with disability.
For instance, schools once had the power to exclude children with disability without protections for those children.
That’s where systemic advocacy comes in. Systemic advocacy “lobbies for reform and change of social systems and structures that discriminate against, abuse and neglect people with disabilities” (Seymour and Peter).
Systemic advocacy is not individual, though it can be undertaken by just one person advocating on behalf of a group. The aim of systemic advocacy is to make positive change for a whole group of people. While this kind of advocacy takes time, strategy and resources, in the medium or long term it is more effective than negotiating that systemic barrier person by person, over and over again.
We work to promote inclusion, end abuse, neglect and exploitation, improve service delivery and more.
Systemic advocacy can lead to lasting change.
Family Advocacy's work
Family advocacy works systemically for change in many areas, these include:
Family Advocacy believes in and works for inclusive education. This means children with disability being included in regular classrooms with appropriate adjustments and support. Inclusive education seeks to address the learning needs of all children, youth and adults, with a specific focus on those who are vulnerable to marginalization and exclusion. The principle of inclusive education was adopted at the United Nations Salamanca World Conference (UNESCO 1994) where inclusive education was viewed as a human rights issue and as a means of bringing about personal development and building relationships among individuals, groups and nations.
This was stated clearly in Article 2:“Regular schools with an inclusive orientation are the most effective means of combating discrimination, creating welcoming communities, building an inclusive society and achieving education for all.”
Case study: Kids Belong Together campaign
In the mid-nineties when thousands of parents of children with disability were being refused enrolment in the regular class of the local neighbourhood school, Family Advocacy coordinated a campaign to change education policy and education infrastructure so that students with disability could expect a quality education together with their peers.
While initial advocacy efforts led to the physical presence of students with disability, teaching practice and school attitudes kept them marginalised. In response, advocacy organisations worked both outside government (through campaigns, letters, articles and discussion papers) and inside government (on working parties and advisory groups) to enable children and young people with disability to have the same opportunities as their peers without disability.
Now, kids with disability have a right to attend their local school. While there are still barriers to work on, this is a big improvement, and one that would not have happened without systemic advocacy.
Please contact us about a systemic issue you may have around education, we'd love to hear from you.
Our work on education
Below are some key documents we've produced on education over the years:
Templates and tips for contacting your MP about inclusive education
Family Advocacy has a vision of an inclusive society, and that means inclusive housing, too. An inclusive housing system is one which caters to the needs of all people, including people with disability, and provides for and encourages social mix. Diverse communities are good for everybody.
A housing system that is inclusive of people with disability means: separation of support and housing; deinstitutionalisation; adequate affordable housing; and accessible housing.
This is a view that many people around the world share. The United Nations Convention on the Rights of People with Disability supports “the equal right of all persons with disabilities to live in the community, with choices equal to others.”
Read Family Advocacy’s position statement on inclusive housing.
With these points in mind, Family Advocacy seeks more community housing; better and more public housing; home ownership assistance, including secondary dwellings or granny flats; increased Commonwealth Rent Assistance and private rental assistance at a state level; accessible housing.
Case Study: Supported Living Fund
In 2010 Family Advocacy advocated for and achieved one of the first individualised funding packages in NSW, the Supported Living Fund. This fund was set up with the idea that everyone deserves their own home. Parents wanted to support their adult child to move out of home, with appropriate funding and support, while they (the parents) were still active and capable of supporting a transition.
As ADHC states: “The Supported Living Fund (SLF) is a form of individualised accommodation support funding for adults with disability aged 18 to 64 years. The funding is portable, remains with the individual and is administered by a service provider of the person’s choice.”
Our work on housing
Below are some key documents we've produced on housing over the years:
Family Advocacy believes that people should be supported in individual ways that suit them, that work with rather than against their natural safeguards and supports. This means not being funnelled into the service system but having the capacity to make meaningful choices about how they spend their support package.
This is an approach that’s becoming more widespread with the NDIS. While the NDIS comes with its own challenges, the approach provides options to individualise support, rather than automatically congregating or segregating people with disability, and this change of system is a good example of what systemic advocacy can achieve.
The Supported Living Fund is an example of successful advocacy for personalised supports.
Access to independent advocacy
Family Advocacy helps families to advocate on behalf of their child for a good life with the things most of us would expect in Australia: mainstream education in a local school, a place in the community amongst friends and family, and the supports, informal and paid, necessary to make that happen. Around 50 per cent of Family Advocacy’s advocacy funding currently comes from Ageing, Disability and Home Care, with the other 50 per cent being provided by the Commonwealth.
However, this important work supporting families to advocate for their child or sibling is under threat due to the transfer of disability funding, including advocacy funds, to the Commonwealth by 2018. The Commonwealth government is yet to commit to funding advocacy after that date.
For example, a mum may call Family Advocacy because she is facing difficulty at her son or daughter’s school when asking the classroom teacher to make reasonable adjustments to the curriculum for her child with disability, so that he or she can continue to be included in the mainstream class at the local school. Family Advocacy staff would work through her options; provide her with information about her child’s rights; support her to be assertive in asking for her child to be included, and to look for a mutually workable solution.
This is the sort of work, along with systemic advocacy, that requires funding to continue.
NDIS Update December 2017
Family Advocacy's work in the NDIS reviews and appeals space
Sian Williams has recently joined the team as the Systemic Advocate and Leadership Coordinator. Sian is busy providing information to family members and people with developmental disability on the NDIS reviews and appeals processes. Sian is also working to create systemic change within the NDIS.
Family Advocacy attended the NDIS Appeals Forum
At the NDIS Appeals Forum held in Sydney in September 2017, the National Disability Insurance Agency (NDIA) said that it is working to improve its internal review processes. It is working on providing better decision letters which inform participants of the outcomes of internal reviews. It is also working to improve the overall training and guidance of staff handling reviews. Family Advocacy will continue to apply pressure on the NDIA to implement these changes which may help to eliminate the difficulties that families are currently facing through these processes.
The Administrative Appeals Tribunal (AAT) said that applications for NDIS appeals increased from 185 in 2016-2017 to 267 midway through 2017. The AAT has stated on numerous occasions that it is overwhelmed with the fast increase of NDIS related matters coming to the Tribunal. The AAT, however, has also said that it is committed to ensuring fair access to the Tribunal for people with disability.
If you are nervous about challenging an NDIA decision at the AAT, you are able to speak with the Tribunal about your concerns and request reasonable adjustments that may improve the experience for you. Remember, it is not a legal court. It is a merits review Tribunal and it is a place where you can have your story heard.
We strongly encourage families who are considering challenging an NDIA decision at the AAT to proceed. The AAT is the forum that the Federal Government has chosen to conduct the final stage of review of administrative decisions made by the NDIA. Taking concerns to the AAT is the only way to know whether or not the NDIA’s decision is the most correct and preferable one. This ensures that the NDIS operates as fairly and justly as possible.
Want advice for your NDIS Review?
Family Advocacy has developed a comprehensive guide to assist families who are navigating the complex NDIS review process. You can find the guide here.
Need help with Service Agreements?
You will need to sign service agreements with NDIA approved service providers. It is important to be aware of your rights and responsibilities in relation to service agreements with providers. Family Advocacy has developed a guide to assist families when signing service agreements. You can find the guide here.
Changes to the National Disability Insurance Agency
The NDIA has declared that it is making changes to improve the experiences of participants and nominees utilising the NDIS.
It has conceded that its communication with people with disability and their families and allies is flawed and in need of improvement. It will be implementing a new NDIS ‘pathway’ which is designed to improve the communication between the NDIA and participants, nominees and organisations.
It is proposing to make face-to-face planning meetings the standard practice, rather than relying on phone interviews. It is making improvements to the Portal to make it more accessible and clear. It will work to incorporate a larger focus on connecting people with supports that are not related to the NDIS, such as health, education and transport.
Family Advocacy will press for the NDIA to implement these changes before the NDIS rolls out into full scheme in 2018.
The Productivity Commission's Report
The Productivity Commission has reviewed NDIS costs for 2017 and provided a report to guide the final stage of the scheme’s rollout. Family Advocacy made a submission to the Productivity Commission with input from families. It looks like the Commission has taken the stories of families on board when writing its report. We will continue to strongly urge the NDIA to incorporate the Commission’s recommendations.
The Commission referred to our concern that was raised by families in our survey that participants and nominees were not being properly informed of the options available for them to self-manage their NDIS plans. Whilst self-management is the best way to have choice and control over the use of NDIS funding, it is also more cost-effective for the Agency to build the capacity of families and people with disability to self-manage, rather than rely on management by the NDIA.
The Commission has recommended that a draft plan be made available for participants to allow for minor amendments or adjustments to the plan, rather than triggering a full plan review. Family Advocacy endorsed this process with reference to feedback provided by families utilising the NDIS. We will continue to urge the NDIA to follow this recommendation.
The Joint Standing Committee's Inquiry into the NDIS
Family Advocacy was asked to provide evidence to the Joint Standing Committee’s Inquiry into Transitional Arrangements for the NDIS. The Committee heard evidence from the families who responded to our survey on the NDIS.
We informed the Committee that in our survey completed by 100 families, 93% of respondents said that they wanted a draft copy of their NDIS plan. The process of implementing NDIS plans without allowing participants and nominees to check that the plan is adequate or even contains the correct information is unfair and against common insurance scheme practices.
Family Advocacy strongly urged the Committee to recommend that the NDIA provide NDIS plans and correspondence in plain English. We also asked for the NDIA to provide more extensive training for LAC’s to build their capacity to understand the complexities of different disabilities.
The Joint Standing Committee’s Report will be made available on the 28th of February, 2018.