Joint Standing Committee on the NDIS

7 March 2023

Joint Standing Committee on the NDIS NDIS.joint@aph.gov.au

deeply concerned about the lack of adequate safeguards in place regarding the use of personal information collected under the National Disability Insurance Scheme (NDIS) Act 2013.

Dear Members of the Joint Standing Committee,

I write to you on behalf of AMPARO Advocacy (AMPARO), a non-profit community organisation providing individual and systemic advocacy with, and on behalf of vulnerable people from culturally and linguistically diverse (CALD) backgrounds with disability. AMPARO is governed by a voluntary management committee the majority of whom are people from CALD backgrounds with disability and we are funded by the Queensland Department of Seniors, Disability Services and Aboriginal and Torres Strait Islander Partnerships. AMPARO is well respected across the multicultural and disability sectors as the only organisation in Queensland that specifically works to protect the human rights and wellbeing of vulnerable Queenslanders from CALD backgrounds with disability and has done so since 2004.

AMPARO’s independent individual advocacy addresses serious issues of social and economic isolation, unfair treatment and discrimination and represents those who are least able to defend their own rights and interests so their fundamental needs are met and they can actively participate, engage and contribute to family and community life.

AMPARO has witnessed the enormous difference the NDIS can make in the lives of people with disability and their families, with increased opportunities to support inclusion and a good life.

However, many individuals that AMPARO works with are from refugee backgrounds experiencing multiple and complex layers of disadvantage, often isolated from their own communities with limited English proficiency and not accessing mainstream services or specialist disability services, including the NDIS, to the levels they should be.

AMPARO believes that access to independent and culturally responsive advocacy is critical to ensuring equitable access to services and support, to address social and economic isolation, unfair treatment, and discrimination and to support the full inclusion of people with disability across all levels of society.

Access to independent advocacy support is a crucial form of early intervention for people with disability, that:

Addresses serious issues of discrimination, violence, abuse and neglect of people with disability.

Represents the rights and interests of the most vulnerable in our community who do not have a voice, or close family or friends who can support their aspirations or speak on their behalf.
Builds the capacity of individuals with disability and their family members to understand their rights, make informed decisions and to speak up about what is important to them.
Supports timely access to essential information, mainstream services and disability supports so people’s fundamental needs and rights are met.
Prevents an escalation of the person’s issues and vulnerability.
Seeks to build and repair close relationships around the person, an important safeguard for all of us, but especially people with disability.
Identifies systemic failures and brings these to the attention of those in positions of power and influence to effect positive changes in practice, policy ad legislation.
Respectfully challenges poor approaches and responses from service systems.
Encourages services to meet their obligation under Federal and State Policy Frameworks and to work in ways that are culturally safe, competent and responsive.
Has long-term cost benefits for government and public resources.

AMPARO’s has a significant experience in advocating for individuals to effectively access and participate in the NDIS in Brisbane, Logan and Moreton Bay areas since in 2018. AMPARO has also been funded at the State and Federal levels to undertake targeted outreach to provide information about the NDIS and assist with access and participation in the scheme. These projects however have been short term with limited funding and unable to adequately address the unmet need of people from CALD backgrounds with disability and their families to have equitable access to the NDIS. AMPARO has also undertaken a three-year ILC Individual Capacity Building Project, and we understand well the structural barriers that limit access and participation in the scheme.

Whilst service systems should be designed to deliver good outcomes for individuals regardless of cultural or linguistic backgrounds, the NDIS is a complex specialist disability service system that is extremely difficult to access and navigate and it has not been designed to respond well to language and cultural differences of individuals.

As a result, people from CALD backgrounds with disability and their families confront significant obstacles which limit their effective engagement in the scheme and can leave them with their fundamental needs not met or subject to neglect or abuse.

Whilst the NDIS CALD Strategy from 2018 states that: ‘People with disability from CALD backgrounds the opportunity to benefit from the NDIS on an equal basis with the broader population.”, this is not currently the case (NDIS CALD Strategy, 2018).

This is not the case, and we continue to see lower than expected levels of CALD Participation in the NDIS:

In Queensland, a total of 5% of participants are from a CALD background, however ABS data suggests this figure should be closer to 15%.

- Nationally 9% of participants are from CALD background, however the NDIA suggests this

   should be closer to 18.9% (Quarterly Report, December 2022).

Unfortunately, the Queensland State Government and the NDIA have repeatedly declined requests to articulate their ‘goal’ for CALD participation levels in Queensland. In addition, the Queensland Government has been silent on reporting the percentage of people from CALD

Backgrounds That Have Successfully Accessed The NDIS

As a result of funded Targeted Outreach work.

Whilst the Tune Review of the NDIS Act in 2019 recommended the NDIA develop a comprehensive National Outreach Strategy to address the additional challenges for potential CALD Participants, State and Federal targeted measures have been piecemeal and inadequate. This included the National Community Connector Program which was funded for less than 12 months.

AMPARO would like to highlight important concerns regarding the National Community Connector Program which include the following:

A lack of transparency and accountability in how funding was rolled out across Australia.
The program’s rollout of the NCCP was significantly delayed.
In developing this Program, the Federal Government failed to consider the impact of key systemic barriers that would impact on the delivery of this program and successful NDIS access for potential participants.
The decision not to extend the program beyond 30 June 2021, was disappointing and failed to consider the many obstacles and barriers that the program could not address in the short term, nor fully understand the complexity of this work.

At the end of the NCCP, of the 102 people that AMPARO had identified during this program, 60 individuals still required significant support to access the NDIS and other specialist disability supports.

Barriers to the NDIS are many and largely the result of a system that has in its design failed to recognise the needs of people from CALD backgrounds with disability.

AMPARO’s experience is that people from CALD backgrounds with disability and their families require intensive culturally appropriate information, and support, delivered with the assistance of bicultural workers and certified interpreters, to ensure they can:

Access interpreting services to ensure accurate understanding and effective communication.
Understand their rights and to know what a ‘good life’ for people with disability looks like.
Understand the opportunities available under the NDIS and the necessary steps to access the NDIS.
Gather eligibility “evidence”, including the impact of impairment on their functional capacity.
Access timely, affordable allied health and other medical assessments.
Contact the NDIA to make an access request.
Complete preplanning and articulate their needs for support.
Respond to requests from the NDIA for additional information.
Effectively participate in NDIS planning meetings.
Implement their plans fully, with assistance from a Support Coordinator.

Without targeted culturally appropriate engagement and specialised assistance through each

step of the process, too many individuals from a CALD background with disability and their families have either:

Not submitted an access request to the NDIS.
Engaged with services including the NDIA and its Partners in the Community, who fail to provide interpreting services.
Had NDIS access requests rejected, often due to lack of adequate evidence of disability and the impact on their functional capacity. This is despite having a substantial disability.
Not known how to respond to requests for further evidence from the NDIS.
Received poor plans that do not meet their needs.
Not been able to implement their plans, due to inadequate or no funding for support coordination.
Not supported to connect with appropriate services and receiving poor quality service provision, including services that are overcharging or engaging in unethical practices.

Additional challenges for CALD Participants include:

Inadequate support to connect to culturally competent, safe NDIS providers that can deliver quality services. They are often linked to poor NDIS providers, including support coordination services.
A major shortage of skilled, experienced and culturally competent staff across all areas.
Participants being asked to sign service agreements, even when interpreters have not been provided and they do not understand what they are signing.
Services overcharging through poor financial management or intentional fraud or ceasing involvement when the money runs out.

The assumption by the NDIS and the Quality Safeguards Commission, that people have access to internet and computers, with levels of English and computer literacy to utilise online systems to navigate the NDIS, find information and services and make complaints is flawed and a major barrier that must be addressed. In 2019, The NDIS report On CALD Participants noted that the complaint rate of CALD participants was consistently lower than non-CALD participants over the last ten quarters.

Whilst the Federal and State, Disability Services Acts take strong positions in stating that no one service should have total control over a person’s life, this same position is not reflected in NDIA Legislation, nor in current NDIS practices.

Unfortunately, many NDIS Providers have total control over the person’s supports, delivering core supports, capacity building services, including Support Coordination, Plan Management and Supported Disability Accommodation etc. As a result of the system that allows these conflicts of interests to exist, AMPARO believes that people with disability are made more vulnerable to abuse and neglect and to not having their fundamental rights and needs met.

The following story highlights the critical need for people with disability to have more than one provider delivering their supports and why having a support coordinator independent from other NDIS services, can be a safeguard for vulnerable people with disability.

Story 1 Conflicts of interest make people unsafe.

A woman with disability from a CALD background, who I’ll call Sara, was assaulted by an ex-NDIS worker. Sara who speaks English well, was able to contact the police and report the incident. When she contacted the manager of her core supports, she told him what had happened, and that she had informed her Support Coordinator about the assault. Sara reports that the manager seemed unhappy with this and replied, ‘you didn’t need to do that”. Sara said she felt the service ‘wanted to keep the incident quiet’. She said she did not feel supported by the service manager, quite the contrary. The service involved is not a registered NDIS provider.

However, the Support Coordinator is from a separate NDIS provider, a highly experienced, skilled and ethical worker. She took on an advocacy role and tried to contact the Commission, as Sara had no informal supports in her life. The coordinator reports that initially it was difficult to speak directly to anyone about Sara’s situation. On phoning the Commission she was put on hold for several minutes, before an automated response stated: “We no longer have a voicemail, you can contact us on the 1800 (the number you just called), send an email to us or go to our website.” and the call was disconnected.

However, the Support Coordinator was able to email the Commission and advise them of the serious situation and then supported Sara, to speak with the Commission independently and to lodge a complaint about the service’s poor response to her assault. The Complaint is ongoing and awaiting the outcome of a police investigation.

The Support Coordinator reports that without her assistance and that of a domestic violence worker, who were able to provide additional important information around the context of the situation, she doest not believe that Sara would have been able to engage with the Commission or to articulate important aspects of her situation. The Support Coordinator reports that navigating the Quality Safeguards system is not easy, and the process can be lengthy, and that Sara needed to discuss and clarify many aspects of the process with her and receive support to allay her fears. Sara is still not clear whether the worker who assaulted her is working in some capacity with the same provider and worries for the safety of other people with disability.

The Support Coordinator reports that once engaged the staff at the Commission have been extremely helpful and keeping in touch with Sara regularly. She believes that most individuals with disability from CALD backgrounds would need someone else in their lives to support them to navigate the Quality Safeguards system, to access interpreters if needed and to have their complaint heard.

AMPARO is aware of many Support Coordinators who because of conflicts of interest are not holding services to account, and not supporting individuals to change providers, even when supports in the Participant’s Plan are not being implemented or poor practices are occurring.

This next story highlights unethical practice and financial mismanagement and how independent advocacy is often needed to protect the rights and interests of people with disability.

Story 2 Financial mismanagement and unethical practices.

These words were painted on the wall of an open plan office, of a registered NDIS provider in Queensland.

    “If we truly care for people, money will come as a by-product.”

Last year AMPARO was involved with a young man from a refugee background with severe and complex physical and intellectual disability, who lives at home with his family and receives NDIS Supports. The parents of the young man have limited English proficiency, however the older brother Ahmed, attends Universality and speak English well. He has taken on a key role in assisting his mother and his younger brother to ensure he receives quality inclusive supports that meet his needs.

Ahmed is used to keeping a record of supports provided to his brother and checking invoices received for his support. Ahmed was concerned that his brother was being overcharged and asked the NDIS Provider to clarify details of supports and mileage being charged. Ahmed advised the provider he would not pay the invoices until he received further details about the costs being charged. Instead of responding to the multiple requests for clarification of costs, the provider continued to send demands for payment of the original disputed invoices.

Eventually the Service provider’s response was to email Ahmed: “If we do not receive payment within 7 days, we reserve the right to pursue further legal action.“When AMPARO’s advocate became involved, she emailed the Service Provider requesting a meeting, with Ahmed, to discuss the family’s concerns. However, the provider again refused to meet with the Ahmed and the advocate. Instead, they repeated their intension to pursue legal action if the full amount was not paid. At this point with the support of the advocate, Ahmed made a complaint to the Quality Safeguards Commission, who spoke with the provider and was told that there were known irregularities in their accounting software. The Commission directed the service provider to meet with the Advocate and Ahmed and to provide the information that had been requested.

The advocate worked with the Ahmed and the service provider and identified that his brother had been overcharged by several thousand dollars or 24.6% of the invoiced amount. The service provider was required to amend the invoices, which were then paid.

Given the actions of the service, it appears making money is a higher priority than Acting with integrity, honest and transparency, as required by the Code of Conduct.

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AMPARO Advocacy would like to thank the Joint Standing Committee on the NDIS for providing this opportunity to report on concerns regarding the National Disability Insurance Scheme. AMPARO has provided several submissions to the Committee since 2015 and it is extremely concerning that many structural barriers continue to limit the effective access and participation for people from CALD backgrounds with disability.

Attached to this letter is a submission provided to the Disability Royal Commission in December 2022, titled: Key Issues Impacting People from a Culturally and Linguistically Diverse Background with Disability, in Queensland. This submission presents a detailed analysis of many of the issues that people confront in relation to the NDIS and other issues that impact on their rights and wellbeing.

Over the past year, AMPARO has highlighted systemic barriers and issues of inequity, that people from CALD backgrounds experience in relation to the NDIS, through our formal participation in:

Forums organised by the Independent Advisory Council’s Equity and Inclusion Reference Group,
Meetings with the NDIA, to assist with the development of a new CALD Strategy, as a member of the CALD External Advisory Group.

AMPARO anticipates that the NDIA will complete the development of a New CALD Strategy with a detailed Action Plan, before the end of 2023. However, the Joint Standing Committee on the NDIS has an important role in ensuring that a new CALD Strategy will be well resourced, implemented in a timely manner and able to address the many issues of disparity raised by people with disability themselves and those agencies and organisations who have contributed to the development of a new CALD Strategy.

Your sincerely

Maureen Fordyce Manager