Issues within the National Disability Insurance Agency regarding capabilities and culture in positions of power in participants lives.

Autism and understanding in the NDIS

Speaking Up for You Inc. (SUFY) is a disability advocacy organisation in Brisbane, funded by the National Disability Advocacy Program (NDAP) and the Queensland Disability Advocacy Program (QDAP). SUFY works with people with disabilities, and mental health to ensure their fundamental needs are met. This submission relates to the subsection (a) in the ‘Inquiry into the capability and culture of the NDIA’. As an advocacy organisation SUFY has experienced many concerning failures within the capabilities of the people working within the National Disability Insurance Agency (NDIA), and with reference to (a) stated below there will now be an explanation of these inadequacies.

(a) the capability and culture of the National Disability Insurance Agency (NDIA), with\n reference to operational processes and procedures, and nature of staff employment;

Then there will be a short discussion around participant ability to give feedback and make complaints that actually make a difference to their situation, in reference to capability (b) as stated below.

(b) the impacts of NDIA capability and culture on the experiences of people with disability\n and NDIS participants trying to access information, support and services from the\n Agency; and\

As part of our advocacy work with people in Brisbane and Moreton Bay, there is a trend emerging where people with Autism who have been granted access to the NDIS are treated very poorly by providers, as there is limited understanding of communication differences and the actual needs that people with Autism have. Autism not treated correctly by providers or understood in the NDIS, and this is extremely detrimental for the participants. Positive Behaviour Support Practitioner’s (PBSP) treat people with Autism, especially Level 3, as out of control participants with behaviours that require restrictive practices, and many providers use Unauthorised Restrictive Practices for organisational ease. Calculated risks must be taken to ensure the participants human rights are not breached, and they are not subjected to seclusion and containment.

There is a common thread regarding people with Autism needing to change their behaviour, when adjustments in support and strategies from good services and PBSP writers is all that is required. It is the support workers, and services that need to adapt their behaviours to provide person centred care. SUFY has seen people with Autism deemed without capacity due to differences in communication, and

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a lack of interest from all services to adapt their communication to meet the person’s needs. These people have unfortunately been unfairly placed on guardianship orders, even though they have capacity. Even NDIS complaints processes neglect to hear the participant with Autism’s side of the story until pressed by advocates to do so. To make matters worse people with Autism and Intellectual Disability due to fund shortages or services relinquishing them due to being unskilled and unable to support them efficiently. This is not an appropriate place for people with Autism and Intellectual Disability to reside in during a housing crisis. In addition, families are constantly afraid of hospital readmissions for their children due to services deficits and inability to provide the depth of care required.

Lastly, Specialist Disability Accommodation (SDA) providers are behaving without consideration that their tenants have profound high needs disabilities and expect them to behave like someone without a disability. Damages in SDA homes are treated as malicious damage according to the Residential Tenancies and Rooming Accommodation Act 2008, and participants are required to repair damage from disability related occurrences. SDA property managers are difficult regarding repairs and will not commit to assist their tenants to prevent damages by installing kick panelling, instead they use punitive actions and Form 11s and attempt to force the participant to leave or evict them unfairly. One SDA manager said to a parent, ‘You signed a “normal tenancy agreement” for your child with a disability’, essentially blaming the parent, and proceeded to state how disability within the Act was all a grey area. SDA managers will also not work with services to fix issues and expect guardians who do not live with their child, nor provide support to fix it themselves. The final blow the SDA tenants human rights is that builders and repairers ask participants to vacate for work to be carried out, even with yellow cards. Even though, people without disabilities do not have to vacate for repairs under the same Act.

Recommendations - The whole SDA industry is failing its participants and the grey area needs to disappear permanently. - SUFY suggests the NDIA write special conditions to be attached to every standard SDA tenancy agreement to protect the participants from this retaliatory behaviour and unfair requests or overhaul the system. As it stands this situation is perpetuating incidences of unsafe behaviour from the SDA industry towards people with disabilities. - NDIS or independent regulation of SDA managers and robust housing, as CSN planners and other NDIS services are not capable of affecting any change here due to their skills deficits and disability knowledge. - SDA managers try to exclude advocates as well, further perpetuating the abuse.

Capability of NDIS complaints avenues for participants-

SUFY has experienced the ineffectiveness of all avenues participants have to make complaints regarding their NDIS services and providers. Firstly, the NDIS feedback email is ineffective and inefficient. Personal information and private complaints go into a pool where many NDIA/NDIS workers can read personal, confidential information. Advocates have made a complaint and the person they wrote the complaint about answered them stating they had seen the complaint; this is not appropriate. Advocates can deal with this, but a participant would find this quite alarming and trust in the complaints process would be diminished. At times an email to NDIS feedback will elicit many follow up emails from NDIS staff saying the information is incomplete because attached documents

Have dropped off emails during communication. This is frustrating for participants and for advocates, as a complete complaint can be lodged and then a barrage of questions asking you to repeat what was already provided is not good use of time. In addition, there is only the generic email to supply extra information to once your complaint has been answered, which still affords participants a concerning lack of privacy regarding confidential complaints.
The time in which complaints are addressed, not the generic first acknowledgement is too long, and one SUFY advocate made a complaint in January 2022 and has not heard anything other than this first response. NDIS CSN planners can access the feedback email, or are redirected emails, and SUFY has had calls about participants not being able to make a complaint about a CSN planner because they intercept the complaint and confront the participant. The NDIS Complaints Resolution Team do not allow sufficient time to hear a complaint and close complaints quickly, responding with notions of thanks for your time, we train our staff and dismiss and disempower participants. Ministers complaints are sent to NDIS staff and the outcomes are very poor from these. When an organisation addresses it’s own complaint the outcome is always bias due to the conflict of interest and protecting one’s own. NDIS complaints officers rarely contact the complainant until they have investigated the situation without input from the participant. Most importantly, NDIS staff and services have no accountability, no consequences and most do not find the NDIS Quality and Safeguards complaint process more than slightly irritating.

Recommendations- 1) An independent complaints body with actual powers to enact changed behaviours in providers and NDIS staff.

Mailing: PO Box 5649, West End QLD 4101 Phone: 07 3255 1244 Fax: 07 3255 1266 Email: sufy@sufy.org.au Website: www.sufy.org.au su ABN: 58 812 329 872

SPEAKING UP FOR YOU INC. protects and defends vulnerable people with disability through individual advocacy to address injustices and make a positive and sustainable difference to their lives.

Issues within the National Disability Insurance Agency regarding capabilities and culture in positions of power in participants’ lives.

Capability and Culture of Complex Support Needs Planners, Support Coordinators and Plan Nominees.

(a) the capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment;

As part of our advocacy work with people in Brisbane and Moreton Bay there is a trend emerging of intake enquiries where National Disability Insurance Scheme (NDIS) participants are calling SUFY because their Complex Support Needs (CSN) Planner, Support Coordinator (SC) or Plan Nominee are not listening to them and are not explaining their funds and their use properly. This lack of ability or lack of care from these powerholders in participants’ life is causing unnecessary pressure on advocacy organisations such as SUFY, as we have to step in and try to ascertain the issues and assist people to utilise their funds in the way they desire to make their life better. Access to NDIS services is a fundamental need not met, as we are finding people alone, unsupported, and unconnected to supports and services, with SCs and CSNs and this becoming our work takes advocates away from others in need. In addition, there are people being paid in positions with these people and barely doing Level 1 SC, even when they are actually Level 2 and 3 SCs. CSN planners will be discussed first, then SCs.

Capability and Culture of Complex Support Needs Planners -

SUFY has found that CSN planners are not doing the role the scheme was implemented for and many participants and families under CSN planners are unhappy but stuck. There is paternalism in CSN planner conduct and communication, no face to face assistance, no supported decision making and Public Guardian like behaviours. As an advocate all of the CSN planners I have dealt with are condescending to families and to advocates in emails, they make judgments about families and do not support them, and when a decision they have been part of does not turn out, they will blame the family

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SUFY IS AN INDEPENDENT INDIVIDUAL SOCIAL ADVOCACY ORGANISATION FOR PEOPLE WITH DISABILITY IN BRISBANE AND THE MORETON BAY REGION

and offer no empathy or assistance. For example, a family with an adult child on the NDIS transitioned from hospital to an SDA and it was later found to be not robust enough. The CSN planner now blames the mother for signing the lease and has been constantly patronising when this is discussed. Families new to the scheme rely on the people in power who are supposed to have knowledge of the NDIS, such as CSN planners to guide them through processes and safeguard them from poor outcomes.

Families of children with disabilities and complex needs have already been disempowered by the education system, society and then a scheme is implemented to ameliorate these issues for families and try to create equity, and CSN planners with a lack of knowledge of disability are judging them yet again. CSN planners do not work as the scheme was designed to be rolled out. They seem to have very little knowledge of the societal barriers and the hardships that come with being a person with a disability, or a parent of a person with a disability. In fact, they become yet another barrier to these families, which is not acceptable in a disability scheme.

These behaviours from CSN planners do not uphold the reason the CSN planner scheme was implemented by the NDIA, as stated in this NDIS authored piece on the roll out. Improved NDIS planning for people with complex support needs | NDIS

The NDIS Planning Submission 59 to the Australian Parliament House from the Office of the Public Guardian (OPG) in Tasmania, as page 4, section e is very indicative of many participant’s experiences. The authors Senior Guardian, Liz Love and Kim Barker Public Guardian state of their experience:

    ‘Involvement of participants in planning meetings is often superficial and patronising. Effective
    participation needs to be managed well to maximise the participant’s input into the planning
   process – setting goals, articulating wishes and desires, and identifying needs. It can be very
     difficult for a person to speak up in front of providers and supporters who they rely upon
   because there is always an inherent power imbalance. People with disabilities (like everyone)
   can easily feel anxious in the face of imposing bureaucratic processes. Communication
     difficulties faced by many people with NDIS Planning Submission 59 5 disabilities exacerbate
     this situation. Proficient and compassionate planners, mindful of and skilled in overcoming
    these barriers are needed in order to manage the planning process if the engagement of the
    participant is genuinely sought’

I have mentioned this to the director of the CSN planner’s in a Brisbane office and sent a submission from the Tasmanian Office of the Public Guardian, and the director said, ‘The concepts in the OPG submission you mention below are not unfamiliar to me, and I thank you for sharing the document.’ This departmental response and awareness is disappointing as nothing is changing for the better. These CSN planners use the power given to them in their positions in a detrimental way to the participants they are supposed to be giving extra individualised complex support to.

Recommendations-

Capability and Culture of SCs and Plan Nominees in NDIS-

Whilst advocating for people with a disability in Brisbane and Moreton Bay, SUFY has found these trends within SC and Plan Nominee culture:

SCs leaving out participants and speaking with family/nominees over the person with a disability.
Services wanting to know funding amounts before agreeing to work with people and choosing not to accept participants for service if they will be “too much work, or too hard to deal with”. Unless an organisation has a specific cohort, it aims to assist, general SC organisations should be taking participants on to do the SC role, not picking and choosing who will be easiest and give the best billable hour totals for KPIs.
SCs and Plan Nominees are not utilising the supported decision making frameworks in place in Queensland and are making decisions for people with disabilities for organisational ease.
SCs and Plan Nominees are writing people’s goals and participants statements to make their job easier.

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SCs that work alongside the Office of the Public Guardian (OPG), especially those from large organisations that pre-date the NDIA’s roll out, do not work with the participant at all, instead they align all plan decisions with the Public Guardian’s wishes, even when they have the ability to visit a participant more than the OPGs capacity allows. SCs are in a position to assist with the OPGs shared decision making framework, but instead choose to align with the OPG, as this is easier.

The following email from SUFY to the NDIS addresses all issues experienced regarding the culture of SCs and Plan Nominee’s in the NDIS. This email was sent with concern for many people SUFY has advocated for this couple of years, and although SUFY realises this is a systemic issue, no follow up occurred for the people I wrote on behalf of except a generic email.

Wednesday, 19 January 2022 2:57 PM To: feedback feedback@ndis.gov.au Subject: Re: NDIS participant plan goals and participant statements.

Dear NDIS Feedback Team,

I am currently seeing a trend with the people I advocate for where NDIS participants are having their plan goals and participant statements written on behalf of them, when they are not present, and without input into what is written. This is not acceptable and may seem minimal, but it is not for the person this is being done to.

If the NDIS’s goals are to empower people, to give them a voice and a say (choice and control) in their plan, their goals and what they would like to achieve through their words, then it does not seem to be achieving this very well at this stage of participation. In fact, it is failing these participants and setting the precedent very early that people are going to continue to act like experts on their life. This is extremely disempowering for people, who are already marginalised, vulnerable and dismissed in society due to attitudinal barriers and harmful societal beliefs that those with the power (Support Coordinators and some family members) know what the participant needs better.

This power imbalance was supposed to be ameliorated with the introduction of the NDIS and its Act and principles.

‘The National Disability Insurance Scheme Act 2013’; Section 4 General principles guiding actions under this Act states:

People with disability should be supported to exercise choice, including in relation to taking reasonable risks, in the pursuit of their goals and the planning and delivery of their supports. (8) People with disability have the same right as other members of Australian society to be able to determine their own best interests, including the right to exercise choice and control, and to engage equal partners in decisions that will affect their lives, to the full extent of their capacity.

I am being asked very regularly how participants can adjust these plan goals and participant statements to reflect their actual goals and who they see themselves as. When a NDIS participant has a Support Coordinator that is cutting their participant out at this stage, there is very little a person can do rectify this. I believe that when a person has a Support Coordinator, they cannot access an LAC for this.

In addition, for the participant to feel heard, empowered and to have choice and control over what is written about them changing the goals and statement may not be an easy task. This process may be being done by time poor Support Coordinators to save time, but I am not hearing participants

gratefulness or appreciation about being cut out of this very important part of designing their plan and supports and choosing how they are represented in their participant statement for others to read.

Instead, I am seeing another way the powerholders are behaving paternalistically towards participants and taking away their autonomy and self-determination. I understand this is more than likely entrenched behaviour, but Support Coordinators need to reflect on what they do daily and how their actions perpetuate the marginalisation that the NDIS is trying to prevent.

In short, I would like to know how participants can rectify this without triggering a review, or if the Support Coordinator is not receptive can the participant obtain help from an LAC. This really is a breach of the NDIS Act and principles, and it is very disappointing.

I would like to be able to give the people I advocate for a way to regain this power and to feel acknowledged and heard. If there is a way, please advise.

It is a betrayal of the NDIS participants, because their ability to plan how to use their funds, and how they would like to be perceived has been taken away from them.

Warmest regards,

Individual Advocate

Only answer since 19 January 2022, and SUFY has found ways to assist without NDIS assistance.

Good afternoon,

Thank you for contacting the National Disability Insurance Agency (NDIA). The NDIA appreciates the time you have taken to provide your complaint. Your complaint has been recorded and forwarded to the complaints team/ relevant team who will be in contact with you to discuss your complaint. We aim to resolve your complaint within 21 calendar days; however, it may take us longer where the complaint has multiple or complex issues. Your feedback reference ID/ receipt number for executive complaints is: For more information about the NDIA please visit our website. If our offices are closed and you require crisis support, you should contact your local GP, hospital, or mental health crisis team. Alternatively, you can contact Lifeline on 13 11 14.

Kind Regards

National Contact Centre Complaints Delivered by the Notional Disability Insurance Agency

National Disability Insurance Agency

Recommendations- 1) Ceasing the SC role, as it is clearly not working for many participants who feel unheard and implementing another role that is not financially orientated and profit making for organisations.

1. Better monitoring of SCs and Plan Nominees by rolling out an independent safeguarding position to provide checks and balances regarding supported decision making and perceived benefits of the role to the participant.
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**SPEAKING UP FOR YOU INC.

Mailing:** PO Box 5649, West End QLD 4101 Phone: 07 3255 1244 Fax: 07 3255 1266 Email: sufy@sufy.org.au Website: www.sufy.org.au su ABN: 58 812 329 872

Speaking Up For You Inc. protects and defends vulnerable people with disability through individual advocacy to address injustices and make a positive and sustainable difference to their lives.

Issues within the National Disability Insurance Agency regarding capabilities and culture in positions of power in participants’ lives.

Regression within the NDIA to trends of mini institutions in the early 2000s and organisations that pre-date the NDIA not changing with the times.

(a) The capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment;

As part of our advocacy work with people in Brisbane and Moreton Bay, there is a trend emerging where people with a disability are having their funding reviewed and their support ratio changed without their knowledge and without consultation from 1:1 to 1:3. This seems to be a push towards the pre-NDIS mini institutions that the NDIA/NDIS stated they were going to eradicate with the roll out of the scheme. Unfortunately, many of the organisations that pre-dated the NDIS roll out are still able to provide services in this new era of disability support. This is very problematic, as these organisations have not moved with the times, nor have they adjusted their focus from money, profit, and group homes to supported decision making and human rights. In addition, the NDIS Quality and Safety Commission has no powers to address these organisations and prevent their harm. Even though Australia has been a signatory on the Convention on the Rights of Persons with Disabilities (CRPD) since 30 March 2007, people with disabilities in Australia are still being subjected to outdated policies and treatment in opposition to what the ratification of the CRPD was supposed to change for this cohort.

Article 19 - Living independently and being included in the community ‘States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:’

(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

(b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

(c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

The NDIA culture seems to be following the group home trend of the early 2000s once again, and SUFY has supported at least four participants through the NDIS Administrative Appeals Tribunal process very recently. These participants are being forced to live with others after three years of finally accomplishing independent living, their human right under the CRPD.

SUFY has found the following during advocacy: - A trend within the NDIA seems to be emerging around saving money, instead of standing firm to the values, ideals of the early NDIS rollout and defaulting to predated disability services philosophies. - The NDIS focus seems to be only towards participant behaviours that harm others when deciding whether people should live together. - SUFY advocates on the frontline see the impact of these funding changes on participants, the fear, distress, and the turmoil that these funding decisions cause unnecessarily. Participants safety and progress with their wellbeing becomes compromised and can often make participants regress. - SUFY is concerned because behaviour such as withdrawal due to anxiety, PTSD, complex trauma is considered acceptable in group living arrangements to the NDIA. If a participant withdraws and never comes out of their room then this is deemed fine for group living. SUFY would attest that this is extremely harmful for a participant to be forced into isolation, to endure an exacerbation in mental health issues so that the NDIA can save money on support funds. This is still harmful behaviour, but only to the participant themselves, not others, which is why this trend seems to be occurring. - People with Autism are expected to live in group homes. Even if the perfect flatmates are found, this is never long term, people move on, new flatmates will move in and three tenants will have many visitors. This environment is not acceptable for people with Autism, as the environment is overstimulating. - Many participants get accepted for 1:1 support and then find out after Participant Information Access requests that this is only temporary and they are expected to live with others after a designated timeframe expires. - Common rhetoric from people in decision making positions is, ‘If they can live with a carer, they can live with someone else’. This is far from reality, the carer is a safe person, there to support them. A flat mate is not in any way the same situation, as a live in carer, and should not be used as a guideline for determining suitability for shared living.

SUFY recommendations and questions:

Who is the Home and Living Team?
There seems to be a veil of secrecy around who they are, where are they, who is making the decisions, and SUFY questions why they do not meet with advocates or other focus groups.
Participants get no explanations for the decisions made regarding their lives, or any ability to ask questions regarding their decisions.
What are the Home and Living Teams backgrounds and qualifications?
It seems there is a vast lack of understanding regarding the consequences of their decisions and the impact they have on a person with a disability.
Are they from a finance background? Do they have any disability knowledge?
The AAT is the only answer to these hardships caused by the NDIA, and this process is not easy to navigate for most people. In addition, the funding for NDIS Appeals advocates is inadequate to cope with all of the enquiries SUFY gets regarding people struggling to understand and survive the appeals processes.
The Home and Living team need to be accountable for their decisions about people with disabilities lives and be open and onboard to receive feedback from advocates, and NDIS participants and service providers.
They should be open to meeting in forums to discuss emerging trends and their consequences.
SUFY posits that Article 19 of the CRPD needs to be honoured and upheld by the NDIA more in their processes.