Submission 58 — Name Withheld — NDIS Quality and Safeguards Commission | External submission

Joint Standing Committee on the National Disability Insurance Scheme

PO Box 6100

Parliament House

Canberra ACT 2600

Via Email: ndis.sen@aph.gov.au

25 August 2020

Dear Committee Secretary

Re: Inquiry into the Operation of the NDIS Quality and Safeguards Commission

Thank you for the opportunity to contribute to the ‘Inquiry into the Operation of the NDIS Quality and Safeguards Commission’ (“the Commission”), being conducted by the Joint Standing Committee on the National Disability Insurance Scheme.

I write this Submission as an individual who has, in the last 8 months, lodged two formal complaints to the Commission, in relation to the violence, abuse, exploitation and neglect experienced by my dear friend of over 35 years. My friend, who is now 45 years old, is a woman with an intellectual disability who has resided in segregated accommodation settings for most of her life. For more than 35 years, I have been my friend’s informal “advocate”, as well as her best friend. She is incredibly important to me and my young daughter, and our lives would be much poorer without her.

This Submission is extremely difficult for me to write. I have so much to say, having borne witness to the appalling, profound, and un-addressed violence, abuse, exploitation and neglect, experienced by my friend for more than three decades – all whilst supposedly in the “care” of service systems that have meant to care for, protect, and support her. I write this Submission from the heart, and from my personal, direct experiences with the Commission in trying to seek justice and accountability for my friend. I trust that you will read what I have to say and treat my Submission with the same respect as Submissions that may be provided to you by ‘experts’.

In writing this Submission, I recognise and understand that I can only provide information that is relevant to the violence, abuse, exploitation and neglect of my friend, since the inception of the NDIS Quality and Safeguards Commission. However, it must be recognised and understood that there are people with disability like my friend, who have experienced a lifetime of severe and unrelenting violence and abuse, and that there remains legislation, policy frameworks, service systems and state sanctioned practices that enable violence, abuse, neglect, and exploitation against people with disability – particularly women with disability - to flourish.

I must also state from the outset, that current Australian legislation, policy frameworks, service systems, and protection mechanisms (including the Commission), often conceal (and render invisible), structural and institutional forms of gender-based violence related to law, the state and

culture that women and girls with disability (like my friend) not only experience, but are more at risk of – such as forced sterilisation, forced abortion, forced contraception, denial of legal capacity, forced treatment, unauthorised restrictive practices, seclusion, indefinite detention, and forced and coerced marriage.

Background

My friend, who (for the purposes of this Submission) I shall call Jane*, is a 45-year-old woman with an intellectual disability. She has also been deemed to have a mental health illness, although there has never been a definitive diagnosis on this. For the past 13 years, Jane* has been accommodated in a congregate care setting – a semi-supported facility that is referred to as a “lead tenancy model”. Prior to this, Jane* was accommodated in a series of group homes from a very young age. The semi-supported facility that Jane* has resided in for the past 13 years, consists of a series of small “units” that are joined together, with approximately 25 residents living at the site. Each resident has their own individual ‘unit’. A ‘Common Room’ is available for residents to use, however this ‘Common Room’ has ‘operating hours’ and is often locked and not accessible to the residents outside its limited ‘opening hours’. The facility, as a ‘lead tenancy model’, is considered to be ‘one step away from independent living’ for its residents. It is not staffed on a 24-hr basis, and there are large amounts of time during the day (and more on weekends) where there are no staff on site. The facility is operated by a very large service provider organisation.

Jane* is considered to have high and complex support needs, requiring 24-hour support. There is extensive documentation available from the service provider, medical practitioners, allied health professionals, and advocates, to this effect.

In January 2019, Jane* was automatically transferred to the NDIS. Jane* had no involvement in the development of her NDIS Plan, nor did her family, friend (myself), or any formal and/or informal advocate. Up until February 2020, Jane* was deemed to have “full legal capacity” and was under no form of guardianship or other substitute decision-making arrangements.

Over the last 20+ years, I have lodged many, many complaints to a wide range of authorities in relation to the violence, abuse, exploitation and neglect experienced by my friend, Jane*. I have lodged these formal complaints to service provider organisations, to the State Government Department responsible for disability, to the State Government Minister for Disability, to the State Government Minister for Women, and many more. My complaints never resulted in any tangible outcomes for my friend, despite the fact that my complaints were always found to be valid, and I was often promised that action would be taken to address my concerns.

For more than two decades, I have also provided a litany of formal statements and evidence to Police (including video evidence), following the many, many instances of rape and sexual assaults perpetrated against my friend, including by male support workers who were paid to care for her. Many of the ‘instances’ of sexual violence have been proven (including forensically), however, because my friend has an intellectual disability, detectives and police personnel have refused to pursue investigations, as they have deemed my friend to “not be a reliable witness”, due to her intellectual impairment. My friend has experienced a lifetime of horrific sexual violence yet has never received justice nor any support for the sexual violence she has experienced.

My first complaint to the Commission (January 2020)

In mid-January 2020, I lodged a formal complaint to the Commission about what I perceived to be ongoing and abject neglect and abuse of my friend. My complaint was made over the phone. I provided extensive details to the Complaints Handling Officer. I also formally advised the service provider organisation that I was lodging the complaint.

My complaint consisted of a number of concerns in relation to my friend, including, but not restricted to:

My friend not receiving adequate supports, including for personal hygiene, activities and community inclusion;
My friend being left unsupervised and unsupported for extensive periods of time;
My friend experiencing long term, significant, ongoing and unaddressed health issues, including multiple infected skin lesions, toenails growing through into her skin; broken and rotten teeth, lack of pain relief, and, over-medication that caused my friend profound drowsiness and side effects;
My friend not being able to access basic pain relief medication when required;
The service provider organisation having no idea where my friend was, at any time, including during the day and during the night;
The fact that my friend was catching taxis to my home during the day and night, despite having no money to pay for taxis;
The fact that taxi drivers were hostile and threatening to my friend and I because she was constantly catching taxis to my home without having any money to pay for the taxis;
The fact that my friend was being sexually assaulted on a regular basis in the ‘park’ and other places near her ‘residence’;
The fact that my friend had fungal skin infections all over her body, causing her extreme pain;
The fact that my friend was subject to environmental restrictive practices, given that she paid rent as a resident of a ‘lead tenancy model’ setting, which included a ‘Common Room’ for resident’s use, yet the Common Room was locked and inaccessible for large periods of time;
The service provider regularly withholding Jane’s* funds (daily spending money authorised by the Public Trustee), as an inducement for compliance with directions, such as directions to shower;
My friend’s support (including personal hygiene) being provided by male support workers, which was against her expressed wishes and caused her significant distress;
My friend being provided with NO access to any community engagement activities/services, resulting in her being constantly lonely, isolated and bored.

My complaint was investigated by a Complaints Officer of the Commission. I was disappointed at the length of time it took for the Commission to investigate my complaint. It was ongoing for several weeks. When lodging my complaint to the Commission, I advised the Complaints Officer that I regarded my friend’s situation as urgent, particularly given that she was wandering around the streets at night, often in her pyjamas, and also walking to her local shopping precinct during the night to catch taxis (with no money) in order to come to my house. On many other occasions, she would walk to my home during the night (a distance of 6kms), including through snow, rain and hail, most often in her pyjamas and thongs.

On 14th February 2020, I received both phone and written contact from the Commission, via the Complaints Officer investigating my complaint, to advise me that the investigation was being “closed” and that no further action would be taken by the Commission in relation to my complaint. I had a lengthy conversation with the Complaints Officer regarding this decision, as I was very upset by the decision. I took detailed written notes during our conversation. The Complaints Officer told me, amongst other things, that:

My friend was essentially “responsible for her own abuse and neglect,” because she was “inappropriately accommodated”;
Because my friend was deemed to have legal capacity, she was expressing “choice and control” and was therefore “responsible for her own abuse and neglect”;
The service provider had provided “a reasonable explanation and response to all of the complaint issues; they have indicated, both in their response and the information provided, that they shared your concerns about Jane* and have taken action where possible to address those concerns.”
The “situation” regarding my friend was because she obviously didn’t have an “appropriate” NDIS Plan.

I asked the Complaints Officer whether the Commission would be advising the NDIA of the finding that my friend didn’t have an “appropriate” NDIS Plan. The Complaints Officer advised me that this was “outside the remit” of the Commission. I told him that I found that response quite extraordinary – that is, if a finding of my complaint was that my friend had an inappropriate NDIS Plan, and that this was a factor contributing to the neglect and abuse of my friend, then why wouldn’t the Commission be advising the NDIA of that finding?

The Complaints Officer also asked me to let him know the “outcome” in relation to my friend, even though the Commission was closing the investigation into my complaint. I asked him whether the Commission would be “following up” the service provider to ensure that they were in fact, taking actions to address my ‘concerns’ given that the service provider had advised the Commission that they “shared” my concerns. The Complaints Officer advised me that this (any follow up) was “outside the remit of the Commission”. I found this not only deeply concerning, but incongruous.

During the Commission’s investigation of my complaint, the service provider organisation lodged an application to the Public Guardian for guardianship of my friend. The rationale given by the service provider for the guardianship order was because “Jane’s* support requirements cannot be met at this site”, and that “Jane* faces risk daily in her current accommodation and support level”.

A hearing for the Guardianship application was set down for 14th February 2020. I attended the hearing with my friend. Others present at the hearing included the Public Guardian, service provider staff, and Jane’s* father. Although my friend can read, write and has good comprehension, at no point during the hearing did the Guardianship Tribunal members address, nor speak to my friend.

The Guardianship order was granted, effective from 14th February 2020, until February 2022. The Public Guardian’s role was, amongst other things, to find my friend my suitable accommodation and support, and to act to address my friend’s serious health issues.

I found it alarming that, as a result of me lodging a formal complaint to the Commission about the neglect and abuse of my friend, the service provider lodged an application for guardianship of my

friend, deciding that this was the answer to what was, in effect, a long-standing failure of the service provider to provide adequate services and supports to my friend.

I am of the view that it would be deeply concerning, for example, if by lodging complaints to the Commission, people with disability ended up under substitute-decision making regimes as the “solution” to them having experienced violence, abuse, neglect, and/or exploitation. Substitute decision making regimes (such as Guardianship) should be a ‘last resort’ and not the first strategy employed. In the case of my friend, it was not her fault that she was “inappropriately accommodated” in the “wrong model of accommodation” (for 13 years) whereby her support requirements “could not be met” in that model of accommodation.

Although a Public Guardian was appointed for my friend on 14th February, there was no progress in relation to my friend. The Public Guardian who was at the Hearing on 14th February, and who had advised us that she would be Jane’s* guardian moving forward, resigned from her position shortly after the Hearing. Another Public Guardian was appointed, however by May 2020, there had been no progress on anything in relation to my friend, other than advice from the Public Guardian that she would be seeking to appoint a new Support Coordinator for my friend. The Public Guardian had not spoken to, nor visited my friend. A new Support Coordinator was proposed, however, the new Support Coordinator advised that, due to COVID19 she was “not allowed” to visit my friend at her unit. It was therefore left to me to go and pick my friend up, bring her to my home, organise a Zoom videoconference with the new Support Coordinator, so that my friend could decide if she was happy to proceed with the new Support Coordinator. The second Public Guardian was ‘re-allocated’ to a different role in about May 2020, having never visited nor spoken to my friend. A third Public Guardian was subsequently appointed as my friend’s Public guardian in late May 2020.

Between the date of 14th February 2020 (when the Guardian was appointed) and 29th June 2020, I witnessed a significant deterioration in my friend’s situation and condition. I could not understand why nothing had progressed since my first formal complaint lodged with the Commission in mid January 2020.

On 29th June, I subsequently lodged a second formal complaint with the Commission in relation to the ongoing, unaddressed abuse and neglect of my friend. My complaint was lodged over the phone but followed up by email, citing my concerns.

The process of lodging this complaint over the phone was incredibly confusing and difficult. I was initially put through to a call centre. I gave the Reference Number for my first complaint. I advised the operator as to which State and town I was calling from. I provided all my details and those of my friend. I was told that there was no-one available for me to be transferred through to, but that they would take my number and have someone call me back. I asked when I could expect a call back and was told it would be within the “next hour or so”. I waited several hours, and having received no “call-back”, I rang the Commission complaints number again. The person taking my call apologised for the fact that no-one had returned my call. I provided all the same information as I had done when I rang several hours earlier. I was placed on hold. Eventually I was transferred through to a Complaints Officer. I spent twenty minutes outlining the substance of my complaint, only to be then told by the Complaints Officer, that I had been transferred through to the “incorrect State/Territory”. The Complaints Officer said she would pass all my details on (again) to the Complaints Officer in the correct jurisdiction, and someone would call me back. I did finally get a call back from the correct Complaints Officer, some 7 hours after I had first contacted the Commission to lodge my complaint.

I am an experienced informal advocate. I was, and remain, very distressed by the complexity and confusion of trying to lodge a formal complaint. I remember wondering (and still do) how on earth some people with disability would be able to navigate such a convoluted process. In addition, there are many people with disability who simply would not be “safe” to wait for a “call-back” from a Complaints Officer. Some people with disability may only have a small window of opportunity to contact the Commission in order to lodge a complaint. I am of the view that, if someone rings the Commission complaints number in order to lodge a complaint, they should be able to do so immediately. If a complaint has to be “transferred” to a complaints officer in a particular State/Territory, there should be a process of ‘warm referral’ or ‘warm transfer’ so that the person lodging the complaint does not have to tell their story over again.

The second complaint I lodged to the Commission on 29 June regarding ongoing, unaddressed abuse and neglect of my friend, constituted the same elements of my first complaint (January

but included additional, serious elements. My second complaint included, but was not restricted to the following elements regarding the situation of my friend:

All of the carpet and furnishings in my friend’s unit were completely soaked with urine and other bodily fluids, including blood. This had been the situation for months. I repeatedly requested that staff organised urgently to have the carpets and furnishings steam cleaned. I was told by staff that they “didn’t think my friend had enough money” to have her carpets steam cleaned.
My friend’s unit was infested with rats. There were rats in her cupboards, in her boxes of Weetbix, in her stove, behind her fridge, in her laundry, loungeroom and bedroom, and also living in the pockets of two of her coats.
Inside her unit there were two very large over-flowing bins of rotting garbage in her lounge room. They had not been emptied for weeks, and there were maggots and flies in and around the over-flowing garbage bins.
My friend had infected, bleeding fungal skin lesions all over her body, including on her head and ears.
My friend had serious red raw and bleeding excoriation under her breasts, in her pubic region, and between her buttocks. She experienced severe pain and burning when she needed to urinate, due to the layers of infected and red raw skin in her pubic region, and between her buttocks.
My friend had excruciating pain from her rotten and broken teeth and was unable to access any timely pain relief. When I was eventually able to locate a support worker, my friend was given two Panadol tablets for her toothache and migraine headache. No matter what type and/or severity of pain my friend has experienced, she has only ever been treated with Panadol, and only when I have requested it on her behalf. Anyone who has experienced severe toothache, or migraine headaches (as my friend regularly experiences) would understand that Panadol is hardly strong enough in these types of situations. Yet because my friend has an intellectual disability, the ONLY pain relief medication she has ever been able to access is Panadol.
My friend did not have timely access to supports and medication as the ‘Common Room’ was often closed and support workers did not interact directly with my friend, but instead, stayed in the Common Room, playing on their phones and watching television.
During the COVID19 pandemic, support workers who were meant to be providing 6 hours of direct support to my friend each day, simply did not turn up to provide support, and/or if

they did, they instead remained in the ‘Common Room’ watching TV, playing on their phones and/or smoking outside.

My friend had lack of access to an adequate diet, particularly through the COVID19 pandemic. She was often hungry and was reliant of support staff to bring meals to her unit. One evening she was given “fried rice”. The “fried rice” was in fact, a small amount of boiled white rice with a few pineapple pieces stirred through it.

It is important to note here, that between the date of my first complaint to the Commission (January

and the date of my second complaint (29 June 2020), my friend was meant to be receiving SIX hours of direct support each day. This raises a number of unanswered questions:

How is it possible that an NDIS participant, meant to be receiving 6 hours of direct support every day, could be living in squalor, in a rat-infested unit, with maggots and flies, with urine and blood-soaked carpets and furnishings; with NOTHING done by the support workers to address these issues?
My friend did not receive six hours of direct support each day. During the COVID19 pandemic, she received minimal support. How is it possible that my friend has had to pay (through her NDIS package) for six hours of support every day, that she rarely, if ever received?
When my friend was transitioned to the NDIS in January 2019, an ‘agency’ was appointed to provide support co-ordination. Between January 2019 and May 2020 (when a new Support Coordinator was appointed by the public guardian, with my assistance), my friend had NEVER met, nor spoken to the ‘Support Coordinator’ from the agency that was appointed in January 2019. Not only had my friend never even met nor spoken to the ‘agency appointed’ support coordinator, she received NO support coordination between January 2019 – May 2020. Yet she was charged for support coordination during this period (from her NDIS package).
How is it not considered ‘fraud’ or ‘theft’ when my friend has been paying for ‘agency’ support coordination (that she never received) and six hours of direct daily supports – that she has rarely received?

The same Complaints Officer from the Commission who had investigated my first complaint (January 2020) was charged with also investigating my second complaint. As at the time of writing this Submission, the complaint is still under investigation by the Commission, although there have been some immediate and positive changes for my friend (due to the interventions of the new Support Coordinator, myself, and the public guardian). My friend has recently been moved to more suitable accommodation and is receiving 24-hour support. I have been advised that this is only an interim measure for three months. I have no idea what will happen for my friend after this 3-month period. The accommodation to which she has been moved, is operated by the same service provider organisation.

I have had regular engagement with the Complaints Officer during the investigation. I have raised my concerns as to why the Commission has not taken stronger action against the service provider organisation. The Complaints Officer advised me that the Commission would prefer to take a “carrot approach” with the service provider organisation, rather than a “stick approach”. I asked why the Commission had not taken stronger action, given my friend was supposed to have a Behaviour Support Plan developed in January 2019, when she transitioned to the NDIS. The Complaints Officer agreed that my friend should have had a Behaviour Support Plan developed, given that she was subject to restrictive practices (medication and some environmental). As at the

beginning of August 2020, a Behaviour Support Plan had still not been developed for my friend. In late August, I was contacted by a ‘psychologist’ who advised she had recently been appointed to “urgently” develop the Behaviour Support Plan for my friend.

Throughout my dealings with the Commission, in the context of lodging two formal complaints, I am of the view that the Commission does not put the person with disability first, but rather puts the service provider first. For example, when closing the investigation into my first complaint, the Commission advised me that:

The service provider had provided “a reasonable explanation and response to all of the complaint issues; they have indicated, both in their response and the information provided, that they shared your concerns about Jane* and have taken action where possible to address those concerns.”

However, no information was provided to me by the Commission as to ‘what’ actions had been taken by the service provider to address my concerns. It is clear from what occurred to my friend between the time of my first complaint (January 2020) and the time of my second complaint (29 June 2020), that in fact, NO actions had been taken by the service provider, and my friend’s health and well-being (and her ‘situation’) deteriorated significantly.

If my friend did not have me in her life, to lodge complaints to the Commission, to advocate on her behalf, to agitate constantly for my concerns to be addressed, I firmly believe that my friend would easily have ended up as another ‘Ann-Marie Smith’. I do not mean to be disrespectful in any way to the late Ms Smith in using her name in this Submission. What I am trying to point out, is that there are many, many women with disability in similar situations to Ms Smith, including my friend.

From my experience of dealing with the NDIS Quality and Safeguards Commission, in the context of lodging two formal complaints, I would like to offer the following recommendations for consideration by the Joint Standing Committee’s Inquiry into the Operation of the NDIS Quality and Safeguards Commission. The following recommendations are not in any order of priority.

The Commission should take a much more proactive role in ensuring quality and safeguarding for NDIS participants. This needs to include for eg: well qualified and experienced Commission officers undertaking random, unannounced ‘spot checks’ of NDIS participants, particularly those in group homes, and other institutional and congregate care settings and environments.
Where possible and appropriate, all complaints to the Commission, particularly those related to violence, abuse, exploitation and neglect, should automatically trigger the need for a ‘spot check’, whereby the participant is directly seen by, and ‘interviewed’ by qualified and experienced Commission officers, without service providers present.
The Commission should engage directly with the NDIS participant (and their advocate/friend of choice) in undertaking spot checks, and not just deal directly with the service provider.
The Commission should urgently simplify its complaints process so that people with disability can lodge complaints in a simple and streamlined way.

The Commission should prioritise the rights of the NDIS participant over the service provider.
The Commission should provide more accessible information directly to the NDIS participant, particularly those in group homes, and other institutional and congregate care settings and environments. The Commission must understand and acknowledge that many people with disability in these types of settings and environments, do not have access to the Internet, and are often denied access to information due to the ‘gatekeeping’ behaviour of service providers, some of which can be the perpetrator of violence, abuse, exploitation and neglect of people with disability.
The Commission should focus on undertaking an educative role that builds the human rights and capacity of people with disability, not just an educative role that informs service providers of their obligations.
The Commission should utilise its compliance/infringement powers more regularly and make them more public. This would help people with disability to have confidence that the Commission prioritises them, rather than service providers.
Findings from complaints made to the Commission, that involve the NDIS (such as ‘inappropriate NDIS Plans’) should be communicated as a matter of course to the NDIA and followed up by the Commission.
The Commission should, as a matter of course, follow up on the outcomes of complaints as a basic quality assurance procedure.
Anybody lodging a complaint to the Commission over the phone, should have their complaint recorded immediately, rather than having to wait for a ‘call back’ from the Commission to take their complaint.
If a complaint is made to the Commission over the phone, and has to be “transferred” to a complaints officer in a particular State/Territory, there should be a process of ‘warm referral’ or ‘warm transfer’ so that the person lodging the complaint does not have to tell their story over again.
The Australian Government needs to adequately resource the Commission so that it can properly undertake, and expand on, its role and function.
The NDIA should ensure that all NDIS participants have provision for Support Coordination to be built into their NDIS plan. Support Coordination should include ensuring that the participant has access to a range of informal supports and to more than one service provider.
The Commission should work with the NDIA and people with disability and their representative organisations, to develop an NDIA risk assessment process for identifying and responding to violence and abuse against people with disability, and on the development of pathways to safety for NDIS participants escaping violence.