Policy and Advocacy Monthly Update

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Policy and Advocacy Monthly Update

Sydney + Alstonville

They provide individual, self, family and systemic advocacy for people with disabilities as well as their families.

Every month we will we sharing with you highlights from our Policy and Advocacy team.

Megan and Kim from our team give us an update about the advocacy work they have been up to.

If you would like to contact our Policy and Advocacy team for advice and support please call us on 1800 819 775 or email info@scia.org.au.

Feature image — Sydney + Alstonville

August 2021

Individual, Family and Systemic Advocacy


Our Northern Rivers team have had some awesome wins over August!

  • In early May, SCIA were approached by a tenant with a disability residing in a social housing unit in Lismore. The tenant had transferred from a property in Evans Head in early January of this year, managed by the same social housing provider.

    The client had been requesting access to an amount of $625 he had accrued as an overpayment on his rent. The client had been requesting this payment prior to his transfer in January. In late April he had finally received a response from the social housing landlord indicating that the overpayment amount had been used to cover outgoing maintenance costs arising from the previous Evans Head property.

    SCIA attempted to resolve this matter with the social housing organisation who refused to concede they had erred from their statutory responsibilities. On behalf of our client, SCIA lodged an application through the New South Wales Civil and Administrative Tribunal (NCAT), securing an Order for the social housing landlord to pay our client the full amount of $625 within 14 days of the July 22 ruling. Our client was particularly appreciative of the assistance they had received in resolving this matter.

  • SCIA Northern Rivers advocacy recently assisted a mother and her son (8) to gain access to the NDIS.

    The family of two moved to our region during the pandemic after escaping a domestic violence environment. Feeling isolated and alone with no family or friends in the area, the mother reached out to our service. After hearing about us through the SASH program (Home Modifications, Enable NSW). The son has a physical disability and was declined twice before SCIA came on board to help his mum navigate the NDIS process. Working closely with local community health OT’s and Physios and his specialists, we were successful with his application.

    Next, we focused our attention on the mother who has a psychosocial disability that required a different approach. With the help of our SCIA advocate, the mother was guided one step at a time to encourage her not to feel too overwhelmed by the complex NDIS process.

    It took six months and countless setbacks to gather and prove a 20-year history of the psychosocial disability before she was successfully granted access. Her first plan includes significant COS funding, which will be instrumental in making sure they engage with local service providers.

    Recently speaking to the mother, she advised, “life has vastly improved since gaining access to the NDIS. SCIA advocacy is such an amazing service. I am grateful for my advocate being able to explain things in simpler terms and help me and my son gain access to the NDIS.”


    Our individual advocates continue to support clients achieve great outcomes in the face of hurdles presented by government agencies’ refusal to fund much needed supports, services or home and living solutions. Advocates have also persisted in supporting clients make complaints in response to discriminatory practices by providers and other authorities to ensure that their voice is heard and their rights respected.

    Some significant updates from Sydney’s individual advocates include:

  • With the uncertainty of NSW’s prolonged lockdown, many people have experienced significant uncertainty in their housing security. One SCIA client was ably assisted by an advocate to secure priority status in social housing as well gaining access to the Private Rental Subsidy. This is a great relief for this client, who was living in limbo uncertain of their housing security, as now, in the interim, they may live in affordable accommodation in the private rental market before finding suitable social housing.
  • Many advocates are assisting clients with appeals to the Administrative Appeals Tribunal in relation to the NDIS. These appeals relate to access and plans, especially regarding funding for specific supports including high cost assistive technology. With the National Disability Insurance Agency placing more and more administrative barriers in place, preventing participants from securing a plan that works for them, the team is committed to supporting clients have true choice and control over their NDIS supports.
  • Our systemic advocacy team has had yet another busy month with a specific focus on accessible housing and ensuring people with disability have access to supports and services and COVID-19 vaccines. The team is also very excited to welcome students from the University of Technology Sydney’s Professional Pathways Project to assist with our research projects on supports for people aged over 65 with disability, accessible housing and universal, timely access to assistive technology.

  • Launched in partnership with other disability organisations a survey on access to medical imaging and women’s health services across NSW;
  • Co-signed a letter calling on the Australian Government to ensure that all people with disability in Australia have access to a COVID-19 vaccine and up-to-date information about relevant public health orders to protect them from the Delta variant
  • Made a submission to the NSW Legislative Assembly’s Committee on Community Services on Options to improve access to existing alternate accommodation to address the social housing shortage.
  • Met with NSW Minister for Families, Community and Disability Services, the Honourable Alister Henskens, to discuss issues directly affecting SCIA members and people with disability across NSW.
  • July 2021

    Individual, Family and Systemic Advocacy


    Our Northern Rivers team have a quick update about a win that happened during the month

  • Three years ago a client was placed under financial management and guardianship. Due to some health concerns he was moved into an aged care facility.

    Our client is only 50 years old and he approached our Northern Rivers team to assist him in revoking the financial management and guardianship he was placed under.

    Our team assisted him in gaining access to the National Disability Insurance Scheme and connecting him to a Support Coordinator who helped him organise supporting assessments and reports.

    We submitted the revocation paperwork, alongside the assessments and we are pleased to say that as of this month the order of financial management and guardianship has been revoked.


    Our individual advocates have persisted in advocating side-by-side with their clients through these particularly challenging times and continue to make significant steps toward ensuring clients have the supports in place to dramatically improve their quality of life and ensure their rights.

    Some significant updates from Sydney’s individual advocates include:

  • An NDIS participant has had a massive increase in their plan, with funding almost doubling from $45,000 to $87,000, following a hard fought interval review. They have also secured funding and approval for a motorised wheelchair and Roho cushion, valued at $24,000. Our advocate fought alongside the participant to ensure that all medical evidence was in place to ensure that the Agency recognised the crucial importance of these supports in empowering them and contributing to better outcomes and independence in their day to day life.
    Additionally, Housing NSW has finally agreed to carry out home modifications on their property, after properly considering a report from an occupational therapist. This approval ensures that not only will this participant receive the right supports to meet their disability needs, but they can also feel more safe and secure knowing that their home is truly accessible.

  • Sydney’s advocates continue to assist many clients at the Administrative Appeals Tribunal, particularly with NDIS matters. These include decisions related to access to the scheme as well as ensuring that people have the right supports that they need in their plans. This can be a particularly challenging task, particularly when clients are up against lawyers acting on behalf of the Agency. The role of advocates in standing side-by-side throughout their journey at the AAT is invaluable.
    This month has brought big news on the NDIS front, with the halt on independent assessments in their current format. We have also been focussed on providing feedback from SCIA members and clients on the Disability Support Pension and promoting the need for mandatory minimum accessibility housing standards across all states and territories.
  • Some policy highlights for the month include:

  • Making a submission to the Senate Community Affairs Committees on the purpose, intent and adequacy of the Disability Support Pension. We raised concerns regarding the complexity and lack of support in the application process, disincentives to finding long-term employment and the difficulties DSP recipients have in meeting all their living expenses.
  • Promoting the Building Better Homes Campaign to ensure that NSW, SA and WA all support the Silver Level accessibility standard in their building laws and regulations.
  • Guest spot on SCIA’s Have the Nerve Podcast to discuss the gap in supports for people aged over 65 with a disability.
  • Reporting on developments in the NDIS following the Disability Reform Ministers’ Meeting on 9 July, 2021.
  • June 2021

    Individual, Family and Systemic Advocacy


    Our Northern Rivers advocates have had some wins with our clients.

    This month’s highlights include:

  • Our individual advocate in the Northern Rivers assisted a client who was born with Down Syndrome and now has Alzheimer-type Dementia.

    He is unable to communicate his needs, non-verbal and non-weight bearing. He and requires assistance with all of his daily activities.

    As his disability requires very specific needs, he requires specialised staff that are able to work with him in a slow kind and caring way otherwise he becomes very anxious and display aggressive behaviours.

    Our client resides in a nursing home and the staff are not trained to look after him and he was often just left on his own in his bed and neglected. This was obviously unacceptable as he was also at serious risk of choking and injuring himself.

    His sister appealed to the Administrative Appeals Tribunal (AAT) to have his NDIS plan reviewed by the NDIA with assistance from our advocate in the Northern Rivers.

    We’re so pleased to let you know that after our intervention we successfully fought for 12 hours per day one-on-one support worker assistance 52 weeks per year so that he could receive the care and support that he needs.

    This AAT Appeal was successful and he is now very happy and well cared for by wonderful support workers.

  • A client with a disability has environmental sensitivity, meaning that physical contact with the outside world is limited. They had no informal supports and complex support strategies in place to maintain wellness.

    The place they resided in had high rent and even though client received a private rental subsidy. they were required by Housing NSW to keep a rental diary to demonstrate they had explored all avenues for housing.

    Client had difficulty complying with Housing’s requirements to keep housing search records, and when our client tried to explain that her disability was complex and finding housing was unsuccessful, client says that Housing NSW staff talked over her and overall she felt discriminated.

    A complaint was made to the Anti-Discrimination Board for Housing NSW to abide by their policies regarding disability and to recognise the housing needs specified by her general practitioner.

    A phone conference was held between the Anti-Discrimination Board, Housing NSW, our client and our advocate. After five months of negotiations a Terms of Agreement was finalised.

    Housing NSW has apologised for the threatening approach and has parked the requirement for our client to search for alternate housing.


    Our individual advocates have continued to fiercely support their clients through challenging times and have secured some notable wins throughout the month.

    Some updates from the month include:

  • Many NDIS participants are finding it increasingly challenging to get reviews of their plans when needed, but with the support of an advocate, one SCIA client has secured a review meeting which will hopefully see increases in funding for much needed assistive technology and home modifications.
  • Following a significant complaint to Housing NSW, a tenant has, after many months, finally had repairs carried out on their property to ensure that their living environment is safe and secure.
  • Many more NDIS participants and applicants are struggling to gain access to the NDIS or the right level of supports in their plans and individual advocates continue to strive to advocate side by side.
  • There have been lots of developments on the systemic advocacy front with public consultations covering employment, community inclusion and ongoing debate surrounding the NDIS.

    Some policy highlights for the month include:

  • Corresponding with the National Transport Commission and NSW Transport Minister to advocate for reforms to regulations on motorised mobility devices (including power wheelchairs and mobility scooters) to better suit users’ needs.
  • Raising our concerns regarding policy reforms to the NDIS and introducing SCIA’s work in a letter to NSW’s new Minister for Families, Communities and Disability Services.
  • Making a submission to the Department of Social Services (DSS) on its proposed National Disability Employment Strategy. In our submission we detailed how an integrated, person-centred approach to supporting a person’s employment journey will ensure they find roles that match their aspirations and build their skills.
  • Making a submission to the Disability Royal Commission on Promoting Inclusion. SCIA made a submission outlining its vision for an Australian society in which all people with disability are empowered and have their dignity respected.
  • Our Sydney team joined the team in Alstonville for a joint meeting discussing issues specific to regional and rural areas and how we can address these in our policy work.
  • If you would like to read further about our policy engagements head to our Policy work, Submissions and Alliances page.

    May 2021

    Individual, Family and Systemic Advocacy


    This month, our Alstonville/Tweed Heads team had a successful NSW Civil and Administrative Tribunal (NCAT) application for NSW Trustee Financial Management Order at the request of a client with disability.

    Previously, our client and the family had been under the NSW Trustee Private Managers Team who provided him with positive supported financial decision making to manage his Disability Support Pension (DSP). He had expressed that he was unable to independently manage his finances and had requested this additional support.

    At the time of the review it was decided amongst all parties (client and family) that they would remove the formal financial support and start informal financial supports via his family. This was due to the inability to afford the fee of the formal supports.

    Unbeknown to all parties, informal financial support that is led by family means that the decision makers don’t have legal rights on that individual’s bank account. Client had been restricted by the family and issued him a personal budget of $1.00 a day, occasionally increasing so he can go out for a meal once in a while.

    The family reasoned that the restrictiveness was due to the health of the client and they were only looking out for the client’s wellbeing.

    Our advocacy team in Tweed Heads attempted contact with the family with no response.

    The NCAT pointed out informal financial supported decision-making cannot have their names on an individual’s bank account and there is no legal right to force an individual to make a lifestyle change by restricting their budget as it’s a personal choice that requires an individual change.

    Informal supports were removed and our client is currently placed under NSW Trustee Financial Management Order meaning he now receives a personal spending budget of $150.00 per week which is a huge difference for someone’s self-esteem and personal freedom.

    It is an unusual situation for someone to have a better financial experience relying on the NSW Trustee Financial Management Order rather the informal supports. However, personal financial freedom was unattainable under the informal supports given.

    This situation really highlights the vulnerability of people with disabilities when it comes to financial management and the importance of positive financial substitution. Our client’s health and wellbeing is of the utmost importance, but this should be a lifestyle decision made by the client themselves and not a third party against their will.

    It also highlights how important it is to speak out on behalf of someone who may not be able to. Our client lives in Supported Disability Accommodation (SDA) and a staff member noticed the issue and flagged it with SCIA.

    Our client is now able to go out and integrate with his community, go out to a gig every now and then and live a happier life.


    Our individual advocates in Sydney have had some incredible wins this month, supporting people with the National Disability Scheme (NDIS) to get the supports that they need.

    Highlights of the month include:

  • SCIA assisted a NDIS participant for about a year at the Administrative Appeals Tribunal (AAT) to secure approval of $24,000 in funding for a double bed and mattress and 6 hours for an OT report. They were also approved for a trial for vehicle modifications, which comes on top of approval for $704,000 in supports funding and for a motorised wheelchair.
  • SCIA advocated on behalf of a client with an overspend on their 2019 plan and the National Disability Insurance Agency (NDIA) has now confirmed that the service provider will be paid.
  • A client with a spinal cord injury who was denied physiotherapy funding by the NDIA, was assisted by SCIA to lodge an application with the AAT. Before the first case conference, it was settled and the client was granted funding for 140 hours of physiotherapy.
    There have been lots of developments on the systemic advocacy front with debate on the NDIS and accessibility.
    Policy work this month has included:

  • Making a submission to Premises Standards Second Review.
  • Contributing feedback to the Assistance Animals Survey.
  • Writing a letter to NSW Minister for Better Regulation and Innovation, Kevin Anderson, to encourage him to accept minimum accessibility standards in the National Construction Code.
  • Following a suggestion from an SCIA member, writing a letter to Victorian Ministers to ensure that any purpose-built COVID quarantine facilities meet accessibility standards to future-proof them as housing for people with disability.
  • If you would like to read further about our policy engagements head to our Policy work, Submissions and Alliances page.

    April 2021

    Individual and Systemic Advocacy


    We’ve had some great wins this month for advocacy.

    A client with a spinal cord injury came to us wanting assistance with an icare dispute which resulted in her support worker’s hours being reduced by half the amount.

    We assisted by engaging with all parties via email and over the phone meetings to inform our client of her of her rights and the icare dispute process.

    Our intervention resulted in icare agreeing to reinstate the appropriate support worker hours for her current 12 month plan.


    Our individual advocates in Sydney have been working hard to ensure that people are being fairly represented.

    Highlights for this month include:

  • A client of ours had been fighting for over two years for a psychiatric assistance animal. SCIA worked with the client to gather reports, write letters and liase with the National Disability Insurance Agency (NDIA) and the Administrative Appeals Tribunal (AAT).

    We located assistance animal providers with capacity for new clients, most had a waitlist of minimum two years, however one particular provider with capacity helped us design a proposal for the NDIA.

    A wonderful and compassionate lawyer helped support us and the client at the AAT conference, and finally as of March this year the NDIS approved funds for a psychological assistance animal.

  • SCIA applied for an internal review for a client who was rejected for Disability Support Pension (DSP) in November 2020. This client had a stroke and suffered a brain bleed which has affected her.

    At the AAT, the DSP was refused on the grounds that the condition had not been “fully treated”. In the interim, we applied for Job Seeker with an exemption due to her medical condition.

    After various home visitations, supporting medical documentation and telephone interviews with Centrelink, as well as a Centrelink appointed doctor, our client was successful in receiving the DSP in March 2021, backdated to January 2021.

  • A client of ours with C2 spinal cord injury (SCI) has a young daughter and works part time, and needs 24 hours care with support workers. However, the provider had dismissed her calls to engage with another provider as the issues were arising such as:

    • Staff were sleeping during a night shift where it is required that support workers must be alert for any emergency
    • Support workers speaking over client and making decisions on her behalf
    • Items missing
    • Support workers dispatched who cannot drive to assist client. This specification has been stated in client’s care plan
    • Reports of staff covering surveillance cameras

    Fortnightly meetings were taking place with the provider to speak about these and addition issues that were arising, and to plan strategies to ensure duty of care and due diligence.

    The provider was reluctant, but after a face-to-face meeting with our client, general manager of the agency and other management we are now successful in having two agencies engaging, with intention of including a third agency, to ensure that one is not dominant.

  • Two sessions on Disability Awareness Training (DAT) for two home care and disability support service who actively recruits allied health professionals.
  • The Systemic Advocacy team has had another busy month with ongoing challenges surrounding the proposed changes to the NDIS; introduction of the Disability Support for Older Australians Program (DSOA) and possible reforms to the National Construction Code to enforce mandatory minimum accessibility standards. This included:

  • Making a major submission to the Joint Standing Committee on the NDIS’s Inquiry into Independent Assessments
  • Writing a letter to the Minister for Health, Minister Hunt, outlining serious concerns with DSOA and the need to maintain the independence, choice and control of older Australians with disability.
  • Writing a letter to the Chair of the Australian Building Codes Board, Minister Duniam, on the significance of mandatory accessibility standards in anticipation of April’s meeting of Building Ministers.
  • Throughout the month we have also attended workshops and provided feedback on a common building outcomes framework for people with disability; restrictive practices and segregated settings; and a review of the Disability (Access to Premises – Building) Standards 2010.
  • March 2021

    Individual and Systemic Advocacy


    It’s been a busy month for the Advocacy team up here in Alstonville, the year is now in full swing and we’re seeing lots of new advocacy issues coming in!

  • One of the more common issues we’ve been getting these last few months is access to the National Disability Insurance Scheme (NDIS). Often people will come to our team because they just don’t know what to supply the National Disability Insurance Agency (NDIA) with to gain access into the NDIS.

    Our admin wizard, Donna, up here in Alstonville has helped piece together an NDIS Eligibility Toolkit, with some handy hints for you and your health care professionals, aimed at ensuring you tick all the required boxes for access.

  • A client came to our Alstonville team recently because they had been declined access in their initial NDIS application.

    We spoke with them, provided some information around what was required, helped them compile the information needed and submit it to the NDIS reviews team. This was submitted within the 100 days the NDIS give you to review a decision.

    However, over the course of a couple of weeks, the submission ran over the 100 days without us hearing back from the NDIS. Our advocate called up, explained the situation, but was told that due to it now being outside of 100 days, the review can’t be actioned in our central office.

    The review was forwarded to the NDIS Northern team, and our advocate escalated the issue to our contact in the NDIS complaints department. The next day, an NDIS representative called up our client to say they had been successful in being admitted to the scheme! What a great outcome!

  • If you or someone you know needs help with accessing the NDIS or reviewing a decision they have made, feel free to get in contact and we would love to help out! If you would like to get a copy of the NDIS Eligibility Toolkit fill out our Policy & Advocacy Request Form.


    The systemic advocacy team has had a very busy month, focussing our efforts on responding to proposed changes to the NDIS, housing and preparing our 2021 Advocacy Strategy.

    Highlights from the month include:

  • Making a submission to the NDIA on proposed reforms to the NDIS (including the introduction of independent assessments)
  • Co-hosting a virtual roundtable with the Physical Disability Council of NSW and Muscular Dystrophy NSW to discuss the proposed NDIS reforms
  • Attending multiple consultations with the NDIA to gather more information on the proposed NDIS reforms
  • Publishing our finding from our 2020 Advocacy Engagement Project. Read it here.
  • Joined the Building Better Homes Campaign and co-signing a letter to the Prime Minister and state and territory leaders to ensure mandatory minimum accessibility standards are included in the National Building Code. Read our letter here.
  • February 2021

    Individual and Systemic Advocacy


    Our team in Alstonville supports the entire Northern Rivers area. Here is a snapshot of our team’s advocacy support and issues that they have faced over the past month.

  • Access to the NDIS – Often, accessing the NDIS requires a fairly detailed report from treating specialists (such as Occupational Therapists and psychiatrists). We’re working with clients to access the NDIS. These reports can be costly and often the person with the disability requires some support to attend. With the state and federal government throwing most of their eggs in the NDIS basket, there is a lack of available (or block funded) support agencies that can help people who are trying to gain access.
  • Accessible Housing – As housing availability remains extremely low in our area, we’re helping clients find suitable accommodation to meet their needs. A client we’re helping has exhausted their crisis accommodation with housing and will be homeless at the time you read this. She has been on priority for some time, but due to a lack of housing options in the region (both private and social), there are extremely limited options.
  • Housing and the NDIS – As people are trying to use reports from NDIS specialists to show a need for accessible housing, these are often “deficit-based” reports that are attempting to argue for increased funding. However, when these deficit based reports get presented to housing, they often see these reports and will decline applications as the person either doesn’t have the funding for the supports they require (based on the specialist report) and therefore (housing believe) won’t be able to maintain a tenancy or requires Specialised Disability Accommodation, with extensive “purpose-built” facilities.
  • Disability Support Pension and NDIS Applications – Applications have started to increase. Clients have expected that application reports for the Disability Support Pension (DSP) can be transferred to NDIS applications, however, this hasn’t been the case. The NDIS wants to see functional capacity whereas Centrelink wants to know if the disability is fully diagnosed, fully treated and fully stabilised. We are assisting clients to access these supports.

    Our team has been working hard over January to help people on an individual and systemic level. Here are some of the things we’ve accomplished and some we are working on at the present time.

    Individual Advocacy

  • Two people successfully gained access to the National Disability Insurance Scheme (NDIS)
  • Two people with a disability had maintenance repairs completed on their houses following complaints to Housing New South Wales
  • One person will be able to access assistive technology via their NDIS plan following an agreement with the National Disability Insurance Agency (NDIA) at the Administrative Appeals Tribunal (AAT)
  • A client who is diagnosed with Prader-Willi syndrome has been home-schooled for the last four years due to bullying. Our service have been able to secure them a position at TAFE. This meant meeting with a Disability Consultant and working through which TAFE courses best suit their needs as well as organising assistance at TAFE.
  • A client currently resides in Housing NSW and has been on the waiting list for a three bedroom dwelling with wheelchair access. Client is an amputee with degeneration in their right arm and their Occupational Therapist has not been able to prescribe a wheelchair due to the current unit having steps and lack of turning space. They will moving to a three bedroom, accessible dwelling.
  • A client had pre and postnatal depression as well as other underlying episodic mental health. After seven weeks of giving birth to her daughter, client had suicidal ideations and attempted suicide and now has a permanent sci. I wrote her a letter of support for custody, which they reported to have helped them immensely with their case
  • A client has heightened anxiety, dyslexic PTSD which meant that they could not finalise her application for the DSP for several months. Client is also homeless and our team assisted them with the application, made representations to Centrelink on her behalf, and she had been successful with receiving the DSP. Indirectly, client had accrued debts with Centrelink (Corona Virus Supplement and rental assistance) which our team had assisted with and the debts were waived.
  • A client had fallen out of their wheelchair and broke their femur as a result of his driveway being broken in his Housing NSW home. Our team had referred them to a lawyer after not receiving a response from Land & Housing Corporation (L&HC) for several months. Client was awarded $100,000 in damages. A complaint was lodged with the Australian Human Rights Commission (AHRC) on disability discrimination and L&HC contractors have built a new driveway and are also going to build a new bathroom and kitchen.
  • We’re currently working on

  • Issues before the Australian Human Rights Commission
  • NDIS related issues before the Administrative Appeals Tribunal
  • A housing issue that is now before the NSW Civil and Adminstrative Tribunal
  • Issues relating to the NSW Public Guardian
  • Issues relating to Housing, Disability Support Pension, Disability Discrimination, Access and planning decisions by the NDIA, SDA, icare and property disputes
  • Systemic Advocacy

  • Report and presentation on the Advocacy Engagement Project – Our Sydney Advocacy team presented to the board the project and the Advocacy team’s future priorities. Read our Advocacy Engagement Project Final Report and Advocacy Engagement Project Summary
  • Preparing a final report to send out to our SCIA members and the public
  • Preparation and research for a major submission on upcoming changes to the NDIS and the introduction of independent assessments. We attended the ‘Have Your Say NSW’ with the NDIA and other disability sector representatives as well as NDIS participants and family members. Subsequent to this, we conducted a workshop with SCIA to gather feedback on reforms and in February we will make a submission to the NDIA on the proposed changes.
  • If you would like to get in touch with our Policy and Advocacy team in Sydney and Northern Rivers, NSW please email us at info@scia.org.au or call us on 1800 819 775.