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

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.