AGED AND DISABILITY ADVOCACY AUSTRALIA

RESPONSE TO THE INQUIRY INTO THE

Aged and Disability Advocacy Australia (ADA Australia) is pleased to be afforded this opportunity to join in the conversation about the role of the NDIS Quality and Safeguards Commission (hereafter referred to as The Commission) in order that the perspectives of those people with disability and for whom we’ve advocated, are provided. Important also is that ADA Australia’s Disability Advocates who are in very different parts of Queensland have this opportunity to reflect on their challenges in supporting people as they attempt to navigate the current disability systems of which The Commission is an important part.

For many reasons and from multiple perspectives, this is a vitally important inquiry and ADA Australia offers this response in the spirit of seeking to create a disability sector in which every individual is afforded dignity and respect, is supported to exercise choice and control and above all is safe from violence, abuse, neglect and exploitation.

About ADA Australia

Aged & Disability Advocacy Australia (ADA Australia) is a not for profit, independent, community-based advocacy and education service with almost 30 years’ experience in informing, supporting and representing the interests of older people and people with disability in Queensland in relation to the funded supports they receive or are eligible to receive.

ADA Australia’s advocacy team are strategically positioned in each of major provincial cities across Queensland and with a large team based in Brisbane, where ADA Australia has its headquarters. ADA Australia’s state-wide presence means that its advocates across Queensland, are well placed to engage face to face with many who seek our support.

Its noteworthy for the purposes of this response that ADA Australia is funded through the National Disability Advocacy Program (NDAP) to provide disability advocacy services in two regions in Queensland – Rockhampton and the Gold Coast and this represents a relatively recent diversification of services following the rollout of the NDIS in Queensland over the last couple of years. ADA Australia also receives state funding to provide advocacy support to people with disability across Queensland.

ADA Australia is in receipt of funds from the Disability Royal Commission (DRC) to support people with disability wishing to make a submission to the DRC and who require support to do so. This funding extends for the duration of the DRC.

ADA Australia also operates a newly approved Community Legal Service - ADA Law (Formerly known as ADA Australia’s Human Rights Advocacy Service) that operates across South-East Queensland, supporting people of all ages with impaired capacity, including support as they engage with the Queensland Civil and Administrative Tribunal (QCAT) and Mental Health Review Tribunal (MHRT).

The case-based wisdom garnered by ADA Laws legal advocates, whose rights-based practices align with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), will inform the views expressed in this paper.

ADA Australia is a member organisation of the Older Persons Advocacy Network (OPAN). A significant portion of ADA Australia’s government funding is through the National Aged Care Advocacy Program (NACAP).

When ADA Australia’s disability advocates met to discuss what exactly it was they wished to share with this Inquiry, one of the first observations made centered around the complexity associated with understanding the systems within which people with disability are engaging. Typically, people with disability don’t contact an advocacy service and seek support until something has gone wrong or an outcome hasn’t been the one that was anticipated, so advocates are used to stepping in to offer support sometimes quite a long while after things went awry.

When advocates start to unpack the sets of circumstances which have led the person with disability to their current situation, advocates find that their clients are frequently overwhelmed by the complexity of the systems they’re part of and are often unable to articulate what actions have been initiated in response to concerns they have about some aspect of their care. In some circumstances, a recipient of disability support will have made a complaint about some difficulty that they’ve not been able to resolve but lack any understanding of the process they’ve initiated, where the process is up to, what happens next, what the timeframes for each step of the complaints process are and/or the avenues open to the recipient to pursue and hopefully resolve their complaint, or indeed seek a review of a decision.

What these clients highlight is that they’re not always aware of: - Which agency they need to direct their complaint to e.g. one of their providers of direct support, NDIA or the Commission - which agency they may be dealing with and therefore which pathway their complaint will travel - who it is that they can expect to contact them as part of the resolution process - who they need to contact with if they want to clarify where a complaint process they’ve initiated is up to - how to escalate a complaint if there’s been some change of circumstances and they’re feeling at greater risk - what the avenues of appeal are if they’re dissatisfied with the outcome - the fact that free disability advocacy is available to support them through any complaints process

What advocates have identified is that the complaints mechanisms that are available to every recipient are poorly described in ways that communicate easily to people with a range of impairments. Typically, disability providers and the entities like the Commission promote their complaints processes on their website with a reliance on the written word to convey complex information. This may be an appropriate means of communication for people with some forms of disability however what’s missing are other ways of communicating this same information without a reliance on the written word.

For example, providing a flow chart or diagrammatic representation that sets out each step in what may be a complex, multi-layered process which allows people to orient themselves to where they’re up to, what might be their next step(s) and the timeframes they can expect for each step of what may be a multi-layered process. Or, it might utilize audio visual materials to complement the other resources which have less reliance on the written word and equal emphasis on conveying vital but complex concepts in a range of modes and styles that address the preferred means participants have of acquiring information. An important element of this is having access to the requisite supports that unless otherwise provided, preclude an individual’s right to understand.

There is an assumption that if a complaints process is posted on a website that the agency has fulfilled its obligation to broadly promote its mechanism for resolving issues, whereas this only holds true for people who are capable of accessing and assimilating information via this means. The experience of ADA Australia’s disability advocates is that this singular approach fails to acknowledge and appropriately respond to the need for multiple methods of conveying important information to individuals with diverse requirements in respect to their preferred learning modes. Promotion of choice and control and supporting autonomy for all is compromised when information about complaints mechanisms is limited to text-based information.

It’s the experience of ADA Australia’s disability advocates that very few clients whom they support are aware of and feel empowered enough to use the mechanisms available to them for resolving complaints and this general lack of understanding works against recipients self-advocating to address concerns irrespective of whether the problem pertains to their disability service provider, the NDIA or the Commission. People with

Improving Awareness of Complaints Mechanisms

Disability are generally very circumspect about speaking up and complaining, for fear of the consequences and this makes it more critical for the recipient population to more than merely aware of the avenues open to them to speak up and be heard.

Part of the empowerment process advocates engage in with their clients is ensuring that clients understand their rights, the mechanisms for raising concerns and the protections in place that help ensure there will be no retaliatory action. While advocates see this as an integral part of their role, it isn’t their role to inform, educate and empower the entire recipient population about the complaints mechanisms of those agencies who have an obligation and a responsibility to effectively promote these themselves.

One of the unfortunate aspects of this general low level of understanding of these complaints resolution mechanisms is that when recipients are upset about some aspect of their support, they are sometimes inclined to direct their concern to a range of stakeholders who are not the appropriate agent who can support them in seeking a resolution and this approach can be time consuming for all involved. Their inaction may be interpreted as a lack of concern that only serves to compound the recipient’s anxieties and sense of not being in control and underlines the importance of recipients knowing exactly who to contact when issues to do with care and support arise.

One of the strategies which will support a reduction in the level of violence, abuse, neglect and exploitation in the disability sector will be a more concerted focus on making information about the complaints mechanisms available to them more broadly known. Disability support recipients have a basic right to access this information and a right to access the support they may require facilitating their understanding of and support to utilize these avenues when required. The absence of same, reinforces the powerlessness disability support recipients feel to change those aspects of their care and support they feel aren’t right.

Advocates are familiar with scenarios in which the client may be able to tell them that a complaint has been made about a provider but who are unable to advise where the complaint has gone, who within the service delivery hierarchy is dealing with the matter, what the timeframe for the response is or what are the options or avenues of appeal if they remain dissatisfied with the decision(s) reached. From the complainant’s perspective the action they initiated through their making complaint doesn’t have any context and it thus makes it difficult to continue to exercise choice and control over a process which exists in an informational and contextual vacuum. Sometimes months have elapsed since the recipient made the initial complaint and they may have no idea that something should have happened well within this time or indeed who to speak to about the lag.

The powerlessness that people with disability report are reinforced when they attempt to engage in processes that are poorly described or which lack specificity in terms of timeframes, avenues of recourse, alternatives if the complaint can’t be resolved to their satisfaction. Their lived experience of attempting to navigate systems that are poorly promoted and poorly comprehended engenders a range of negative feelings and emotions – anger, helplessness, apathy futility and these are a world away from choice and control, dignity and respect.

Case Study

An ADA Australia Disability Advocate was assigned a new case - ‘Alison’ a woman in her early fifties, who lives independently with support provided through an NDIS package. Alison has lived with chronic mental illness for many years, one symptom of which is acute anxiety. By the time the advocate became involved, Alison’s primary concern had been on-going for several months and by which time Alison and her current support worker were unsure what was happening in relation to an earlier complaint.

Like so many issues that advocates, when requested to support individuals with disability face, Alison’s concern was characterized by recipient confusion around who was supposed to do what, who was involved and the sequence of steps that needed to be followed. All the while it seemed to Alison as though nothing was happening.

What does Alison’s story highlight about the disability system of which she is a part?

What is evident from Alison’s experience is that by the time the advocate became involved, Alison had absolutely no idea what was happening, who was doing what in what sequence and from her perspective during the months that elapsed, she had the sense that nothing was happening and this only served to compound her already heightened anxiety.

Expecting someone with mental illness which contributes to significant psycho-social deficits to comprehend the complexity of her situation created in part by the numbers of stakeholders who’d been involved and the discrete and inter-connected functions of these agencies, is unrealistic. In the absence of any document which provided the client with an understanding of referral pathways, timeframes, appeals mechanisms, and importantly the steps the client could take to establish the current status of the complaint, left the client overwhelmed and her mental illness exacerbated by the sense of a total loss of control over the situation.

Had the client access to a diagrammatic representation of the systems and functions which it turns out were operating out of view, then the client’s capacity to manage the situation could have been enhanced. Self-advocacy requires a suite of tools appropriate to the target population, that provide accurate information in formats that support understanding and build capacity rather than undermine confidence and capacity.

With the aid of a flow chart or something similar, Alison’s current support worker could have played a role in reassuring her with reference to the chart, advising her that it is currently at this step or stage in the process and this has a timeframe of so many weeks.

In this way Alison would have retained an understanding of the process, the players and the timeframe and felt more in control of her situation.

Although it’s likely the client might still have required the support of a disability advocate at the alleged perpetrator’s court hearing, there’s a lot the client might have managed more effectively had they been provided the tools to support understanding. Whilst the Commission’s website has written information about how they manage complaints referred to them, this alone doesn’t adequately address the complexity of the clients situation where there are multiple providers, some of whom sub-contract to other possibly unregistered providers, involvement of Queensland Police Service, the Commission, a disability advocate, and new support workers who are attempting to support the client in the present while the client is experiencing extreme levels of anxiety. Alison’s situation isn’t unique.

Typically, in the absence of clear and concrete information about how to resolve a care related concern, recipients tend to either do nothing out of fear over the repercussions or relay their concern to a range of stakeholders who aren’t able to assist in the resolution. Advocates who tend to become involved as an option of last resort, find complex, confused and often messy inter-relationships between multiple players and differing agendas. Having access to tools that map out this complex landscape that include functions, pathways, timelines, contact points and mechanisms of appeal are necessary to empower people with disability to exercise their right to speak up when things aren’t right and retain a sense of control in respect to any complaints process they initiate.

The widespread reporting of violence, abuse neglect and exploitation to the DRC to date underscores the extent to which people with disability are currently disempowered by the lack of access to the practical tools they require to protect themselves and/or safely navigate their path through the inter-connected service systems, processes and players. Disability advocates remain available to support however even access to advocacy and its scope is poorly comprehended by the recipient population.

ADA Australia has just launched a Self-Advocacy Toolkit intended to support people with disability through the provision of accurate information about their rights as recipients and the simple actions they can take to exercise choice and control over the way their care is provided. The toolkit once placed into the hands of those who need it will go some way toward addressing this identified need.

The Need for Disability Systems Navigators

Disability advocates advise that in their experience with assisting clients to navigate disability systems, they found amongst the disability workforce a poor comprehension of these systems interface. As a result, support workers who are integral to supporting recipients to exercise their rights including the right to speak up, are often poorly placed to advise the recipient how they go about making a complaint and to whom. Again the point is made that if people who work in the sector are unsure about how the system functions, then what prospect of them providing accurate information to recipients about how to exercise their recipient rights.

There is an argued need for people with disability to have access to independent support to navigate their way through the systems with which they’re engaging. Whereas individual advocacy is intended as focused support, usually short-term and issue specific and fulfils a necessary function, there is also a dire need for people with disability to have access to independent navigation support from someone who’s not invested in these systems of direct support. The role of these independent navigators will vary depending on the recipient but is essentially to support recipients to understand and navigate the systems that currently many are poorly informed about. For some, support from a navigator may be one-off and for others it may be longer-term support always with the aim of empowering the recipient to self-advocate.

Sometimes people with disability are fortunate to have family members or friends or allies that offer this ongoing navigational support, however not everyone has this family support. Family members have a right to be family and not assume ongoing responsibility for a son/daughter or a siblings’ continued welfare and support.

There is also evidence of abuse and neglect at the hands of family and friends who may be acting out of self-interest, are not always the appropriate parties to be offering support.

Advocates continue to be aware of the increasing number of NDIS funded providers while claiming to be consumer focused are in fact focused not on the consumer but are inwardly focused on viability concerns and returning a profit.

Although Sharp Practices are written about as unacceptable, there is nevertheless growing evidence to suggest that the practices are increasingly widespread, sometimes glaringly obvious and at other times disguised in the grey zone that is the vacuum created between the provider’s rhetoric and the reality of what they’re doing in practice. It takes an informed and an empowered recipient to challenge their provider over practices which the recipient perceives as questionable and its hardly surprising that providers who may not have the recipient’s best interests at heart are not going to invest energy into informing and empowering their client to speak up when they have a concern.

The experience of ADA Australia’s disability advocates and backed up by the testimonies of people with disability that recipients are in a vulnerable position given the power differentials that exist between themselves and the systems with which they’re engaging. For too long recipients have deemed it was unsafe to speak up and challenge poor care and it’s not until they have some reasonable level of assurance over the safety to speak up that recipients are prepared to open up about their experiences of being a recipient of disability support.

Fear of retaliation and retribution looms large in the consciousness of many recipients such that they remain mute about the poor practices they’re subjected to and it won’t be until there are clear pathways for making and resolving complaints and clearly identified allies who are external to the direct service system who available to inform, support and empower that the goal of a recipient population who are truly empowered to exercise choice and control might be achieved.

Advocates note how recipients who live in regional and remote areas sometimes have little option but to remain with a provider, even if that provider is behaving in ways that err in the direction of sharp practices. Where recipients can’t exercise choice because the market is thin in the area in which they live, they resign themselves to the provider’s behaviours. Advocates argue that sharp practices are endemic and as new providers set up in areas, some are quick to mimic the gouging activities that they observe happening around them.

Advocates have had the experiences of being asked to support recipients who believe they’ve been “ripped off’ by a provider and by the time the recipient finds out about the availability of free advocacy support, the provider has moved on. This is not to label all providers of direct support as perpetrators of sharp practices as this isn’t the case, however the case histories of people whom ADA Australia’s disability advocates have supported makes a case for increasingly widespread practices of direct providers being more focused on their own financial bottom line than ensuring the recipient derives maximum benefit from the support package.

One of the ways that unscrupulous practices can be “outed” is through people with disability having access to navigators who aren’t part of the direct service system, available to support them at key times in their journey in and through the disability system. The presence of independent parties whose role is to support the recipient and who know how the system should be working could act as a powerful deterrent to the gouging practices which are happening and are going unaddressed due to the poor oversight of the NDIS at the service delivery level.

It’s not envisaged that the role of the navigator is to monitor risks or moreover police the service system. Rather, it’s the indirect benefit that the presence of independent, impartial players who have the recipient’s best interests in mind could have.

While the goal is always to develop the capabilities of people with disability through the provision of accurate information, including about their rights and service options in order that they can, to the limits of their abilities, function as autonomous individuals, pragmatically this will be achievable to varying degrees depending on many factors including their level of disability. Notwithstanding the benefits to individuals of having and using the Self-Advocacy Toolkit, there will arguably always be a need for navigators to assist people who struggle to navigate the complex and interconnected disability systems. ADA Australia acknowledges the recent announcement of the expansion of the NDIA’s community connector program and envisage that this program might provide some coverage for the highlighted gaps described.

Navigating multiple interconnected systems

Feedback from disability advocates regarding why it is that service recipients struggle to understand and utilize the mechanisms available to them to raise concerns about their care and support has to do in part with the structure of the disability sector.

The NDIS applicants’ journey from having no formal supports in place, to becoming a recipient of the Scheme involves navigating successfully through several complex systems.

Initially the would-be recipient must make sense of the health system upon which they’re dependent to supply them with the supporting documentation to satisfy the eligibility requirements of the Scheme. Individuals whom advocates have assisted may have had their access declined on two or more occasions because they lacked the capability to ensure the information provided by clinicians satisfied the eligibility requirements of the Scheme.

People whose Access Request has been declined yet who nevertheless believe they meet the eligibility threshold the Scheme are even at this preliminary stage required to manage the complexities inherent in negotiating with clinicians in respect to the specificity of information contained in their reports that provide the all-important evidence to support eligibility.

Where an applicant’s GP, Medical Specialist or Allied Health Clinician has had no or limited experience in framing the information they’re providing an applicant in such a way that it satisfies the eligibility requirements of the Scheme, it often falls to the applicant whose previous access request has been declined, at least in part to self-manage this complex issue. Ensuring that those who are far more qualified, know how to frame medical evidence in ways that support the applicant’s request rather than become impediments to their being granted access is no small feat. It is argued that it’s unrealistic to expect the applicant to assume responsibility for extracting from their treating teams the evidence in a format that supports rather than hinders their prospects of success.

ADA Australia’s Indigenous advocates have encountered many First Nations people with disability who, having been denied access once, elect to walk away from the process because they lack the confidence and know-how to persist in their efforts to gain entry to the Scheme. For those individuals, their being deemed ineligible plays into a much bigger narrative around exclusion and marginalization and the need for self-preservation dictates that one doesn’t keep “flogging the same dead horse”. For these individuals, they lacked access to informal supports from family who could assist them to fulfill the requirements and, in some cases, family were just as unsure of what they needed to do or do differently, to achieve a different result.

That so many whom advocates are requested to support, including First Nations people and non-Indigenous people with disability are frustrated by the outcome of their earlier attempt(s) to access the Scheme and who lack the requisite understanding and skills to orchestrate any subsequent request, speaks to a need for adequate support for all who are requesting access to the Scheme. Advocates experience is that the effectiveness of LACs in offering this type of support is highly variable. As advocates, we’re less likely to hear from those who received great support from an LAC to access the Scheme and instead tend to be asked to support those whose access attempts have been denied.

The expectation that the person with disability can simultaneously straddle complex systems - the medical realm with its assessments, diagnoses, accurate information about anticipated lifelong deficits and the need to request that clinicians modify the information they’ve previously provided, is a challenge that not all are equipped for. The expectation that a range of marginalized and vulnerable individuals, with their lived histories of exclusion rather than inclusion from formal systems of support have the wherewithal to maneuver a path through these complex realms is unrealistic.

Advocates find it’s not uncommon for the initial lack of approval to the Scheme to involve at least in part, the differing skills that clinicians have in how to frame the information, upon which hangs the applicant’s success or otherwise. Advocates argue that more education is necessary for those in the health system who are responsible for providing information about an applicant’s condition, as a means of ensuring that clinicians better understand how to frame information in ways that support the applicant’s request rather than de-rail it.

If all clinicians understood their roles in framing information in such a way as it supports an applicant’s claim, this would reduce the onus on unsuccessful applicants to address evidential deficits in those earlier reports. This was surely never the applicant’s responsibility to ensure the documentary evidence provided by their

Treating Team Fulfillment

treating team fulfilled the requirements of the Scheme, however in the cases of those whose initial request(s) have been denied, it by default becomes their responsibility.

Setting aside those whose functional status is such that they simply don’t qualify for the Scheme because, despite their disability, they aren’t sufficiently functionally impaired to meet the entry requirements, advocates are working with people with significant levels of impairment and who fairly obviously require support to maximise their life potential but have had their access denied two, three or more times. In many cases individuals carry such anger and frustration at a system that promised much but has delivered nothing that it can be a challenge to instill the sense that being deemed ineligible isn’t a reason to give up hope and to inspire the individual make a subsequent application this time with stronger evidence.

If negotiating the eligibility requirements is challenging enough for those for whom English is a first language, thentor all those for whom it isn’t, their challenges are magnified. For anyone who is acknowledged as being marginalized and requiring targeted supports to gain equity of access, the ARF can seem like an immovable roadblock.

Where First Nations People with disability are concerned, the intentional or unintentional exclusionary practices may have started much earlier in life. Their social and economic disadvantage carries on through life. Although candidates for the Scheme, this lifelong history of marginalization and treatment as “other”, compounds their situation and lessens the likelihood of them fulfilling the eligibility for the Scheme. It’s not because there is no lifelong functional impairment, rather because their impairment coupled with their lived histories of marginalization overwhelm and extinguish hope that life might be lived differently - with dignity and respect, choice and control. In many cases their lived experiences haven’t equipped them, nor their family carers or allies, with the necessary skills needed to navigate systems and bureaucracies, including a sense of personal agency, tenacity and hope. The resilience required to not take no for an answer and to persist with efforts to gain approval to the Scheme is difficult to instill in those who have the lived experience of “the system” only ever regarding them with indifference.

Clearly this is a generalized statement and there are instances where First Nations People have experienced greater equity of access to health, education and employment systems however they are the exception rather than the norm. The experience of ADA Australia’s disability advocates is that Aboriginal and Torres Strait Islander people with disability having been treated with indifference by human service systems, often live adaptive lives despite their lifelong impairments and rather than looking to systems external to the existing family and wider social support networks, they draw support from within their family and kin networks. Not everyone is so fortunate however and its these individuals who have slipped through the cracks with no capacity to hold service systems to account.

Discrimination based on their Aboriginality is cumulative and for many, by the time they’ve reached adulthood and have had the NDIS promoted to them as a means by which their lifelong support needs can be addressed, their lived experience of governments and government funded programs whether it be the education, child safety, policing, criminal justice and other systems have instilled skepticism and a healthy disregard for the hyperbole that surrounds both the NDIS and other government funded supports.

Where resilience is called for in not accepting the first, second or third rejection of the ARF as a definitive statement of ineligibility for the Scheme, for Indigenous people who have encountered programmatic barricades their whole lives, their fatalism, borne of both their individual and collective experience is that the Scheme is not for them and they likely walk away.

The need for systems navigators applies to all people with disability however where First Nations People, people with a first language other than English and the other vulnerable and/or at-risk groups are concerned, thistheir need for support to navigate complex systems becomes even more critical.

When disability advocates were asked about the role of LAC’s and the extent to which they performed this function as a systems navigator, the response was mixed. Generally it was the view that some LAC’s see their role as navigators to ensure people with disability make it into the NDIS system but for all those who function this way, there are many LAC’s who don’t see their role as helping people to navigate the system and advocating when and as required.

Disability advocates have supported Aboriginal and Torres Strait Islander people with disability and their family carers who live in remote parts of Queensland who’d been poorly supported by their LAC’s who were

Clear lines of accountability for the way complaints are managed

NDIS complaints processes

One of the things disability advocates find out from people with disability is just how little they know about the complaints mechanisms within the disability sector. Amongst the cohort of people whom ADA Australia’s disability advocates have supported, few people were found who understood and moreover felt empowered to pursue the avenues of redress available to them, if required. The other standout is how poorly understood are the respective roles of both the NDIA and the Commission and how this works against people feeling empowered to use the mechanisms available to them.

The same it must be said also applies to the low levels of awareness people with disability have about access to free advocacy support, when they’re struggling to deal with a situation and have need for independent support. When one considers the necessary elements that support individual choice and control, it begins with information about their options, including the mechanisms available to them that support them to live free from violence, abuse, neglect and exploitation and to exercise choice and control.

As a general statement advocates find that people with disability lack an understanding of the mechanisms that exist and much more needs to occur to ensure that they have access to this information in multiple formats that support their preferred ways of taking on information to afford them the strongest opportunity to operate from a place of dignity and respect and choice and control.

The other observation that disability advocates make is the extent to which people who work in the disability sector lack an accurate understanding of how the complaints mechanisms function, and how this contributes to mis-information being provided to people with disability by those who have an obligation to know better or at the very least not pass on information which is inaccurate.

Disability advocates who’ve supported people with disability who’ve made a complaint and who seek out accurate information have been struck by just how little information is available about the NDIA’s complaints processes, so even for people for whom the written word is an acceptable means of accessing information, there’s little available. For people who learn via other modes of information exchange, there’s even less available.

Advocates encounter people who are confused about the respective roles of the NDIA and the Commission and are unclear about who they would need to direct a complaint to if they were dissatisfied with some aspect of the care and support. Essentially from the time that an individual first applies to become accepted to the Scheme, they are required to quickly learn to navigate multiple separate but interconnected systems, starting

Confidence in the NDIS Quality and Safeguards Commission

Notwithstanding the limited time the Commission has been in existence, there yet exists low levels of understanding amongst the participant community of the Commission’s functions and its relevance to them as participants. Given the important role that the Commission may potentially play in a recipient’s life, the obvious comment to make is that the Commission must find more effective ways of explaining its functions and becoming relevant to disability participants. This poor understanding on the part of the recipient population is not confined just to the Commission’s role but is instead symptomatic of a broader lack of understanding of the different complaints mechanisms that participants have available to them and when and how to utilize them.

Disability advocates have to date supported a limited number of participants who’ve referred their concern to the Commission and been underwhelmed by the outcome of this process. This experience in many ways echoes the experiences of older people who’ve referred their complaint to the Aged Care Quality and Safety Commission hoping for a positive outcome, only to have that Commission decide that the provider had done nothing untoward and thus there was no directive forthcoming about a change in provider conduct.

When people who are dissatisfied with their provider’s failure to respond to what they believe to be a legitimate concern and they escalate it to the Commission, complainants pin their hopes on receiving a favorable outcome. When this isn’t forthcoming, for example because the Commission has determined that the provider has done nothing untoward and the complaint is closed, this can leave the complainant in a very conflicted place. The Commission’s finding can be a difficult thing to reconcile because a sense of injustice endures, and people can become stuck in this disappointment and find it difficult to move on.

ADA Australia has seen firsthand how vulnerable aged care recipients reached out for support to the

comparable aged care commission as a last resort, after all other attempts to address care related concerns had failed to improve the standard of care and how their concerns were effectively dismissed by that commission’s finding the provider had no case to answer. When a safety body gets it wrong, for whatever reason, the impacts for the individual concerned can be huge, and for other recipients who hear about it “on the grapevine” the negative fallout continues.

It requires considerable courage for a vulnerable recipient to escalate a complaint to a body like the NDIS Quality & Safety Commission, given the additional risks associated with an unfavorable finding. The recipient knows that if the outcome of the Commission’s involvement is no direction to the care provider to address the recipients concern, that they’re even more at risk now from some form of retribution from the provider whose actions have been vindicated by the Commission. While the rhetoric of Quality and Safety Commissions is about the additional safeguards, they afford recipients, that is not the lived experience of many who’ve sought support. Advocates have supported recipients for whom their action to seek support from the commission made their circumstances less safe than if they’d done nothing.

The not inconsiderable challenge for the NDIS Quality and Safeguards Commission is ensuring that in a country the size of Australia, it has the capability to thoroughly investigate the concerns referred to it in ways that get all sides of the story and get to the facts about what happened or is happening. Without complaints officers “on the ground” the investigation often tends to be a phone call to the provider concerned and based on this conversation; the Commission decides. Using a centralized model of operation, how can the Commission ensure they’re getting it right. Evidence heard during the Royal Commission into Aged Care Quality and Safety is that the aged care complaints commission got it wrong far too often and deaths occurred as a result.

The sense of injustice that complainants report from going down this path with no change in their circumstances as the outcome and the lingering harm caused by not being believed, sends a powerful message about who is really in control and the real extent of the choices participants are empowered to make. This experience powerfully reinforces to the complainant that there is very little protection available for them as recipients where their provider’s practices are concerned.

One could argue that complainant’s won’t ever be satisfied unless they get their own way as regards their complaints to the Commission, however its more than just “getting one’s own way” and it’s also about an open and transparent process having been undertaken to uncover the facts of the matter. In the absence of this transparency, it can appear to a complainant as though the Commission willingly accepted whatever the provider told them and the Commission’s eagerness to declare the case closed, they’ve from the complainant’s perspective, failed to afford the protections that were implied.

Where poor provider practices appear to be condoned by the Commission’s complaints investigations processes, it gives the provider license to continue to do that which concerned the recipient. The provider’s practices are validated by the Commission’s finding and it leaves the complainant feeling they have few options. There is so much at stake for the complainant when they escalate a concern to the Commission. Making provision for decisions to be reviewed if a complainant isn’t satisfied, is asking the complainant to once again tap into what are often very finite reserves of courage, self-belief and trust that truth and fairness will prevail, contrary to appearances thus far. It expects a lot of someone to pursue a review of a decision in this manner and it can be at a huge cost to them if the outcome remains the same.

An issue of significant concern is the protections available to recipients whose care is delivered by an unregistered provider. Increasingly disability supports are delivered through a mix of registered and unregistered providers and as in the case of Alison in the earlier case study, the recipient understood the worker to be an employee of the registered provider but was in fact a sub-contracted worker from a different agency. Ensuring these relationships are transparent in line with the client’s basic right to know who is providing their care and who’s coming into their home to provide care, is fundamental. So too is ensuring that the lines of accountability between different stakeholders are clear and transparent, in the interests of a recipient being fully informed about provider arrangements and therefore best placed to exercise choice and control.

Where there are multiple agencies providing support and there are plans to put sub-contractual arrangements in place this should be discussed with the recipient or their representative using a supported decision-making

Support Arrangements and Safeguards

To ensure clarity regarding multiple arrangements potentially available to a recipient, these should be mapped so as to make clear who employs the support person and establish lines of accountability with contact details provided for addressing care-related concerns not resolvable directly by the recipient.

It has been flagged as concerning that an increasing amount of support comes from unregistered providers while remaining outside the scope of investigation by the Commission; this leaves individuals vulnerable without adequate oversight or protection mechanisms in place. ADA Australia urges consideration within this inquiry about how such developments impact participant safety given lack thereof regulation over those delivering services beyond commission’s reach.

As disability advocacy representatives we strongly advocate ensuring accessibility information detailing free availability along side other essential resources including local contacts related specifically towards obtaining independent assistance through dedicated advocacy programs accessible locally wherever possible until all recipients fully understand their rights - particularly deciding upon preferred modes receiving help plus accessing chosen advisors freely whenever needed thereby preventing further exploitation under guise caring activities continuing unchecked due insufficient awareness among users themselves.

Empowerment processes must remain ongoing aiming always at equipping people become self-advocates capable influencing decisions made around them effectively aligning actions taken during interventions conducted alongside complaint resolution procedures undertaken separately elsewhere too.

How can current safeguard systems operating throughout disabled communities collectively demonstrate effectiveness guaranteeing individual security? There exists little point conducting repeated investigations unless underlying flaws identified previously get resolved comprehensively now especially considering DRC currently underway presents opportunity tackle issues enabling violence, abuse neglect & exploitation occurring frequently otherwise.

ADA Australia highlights risks faced when growing portions service provision sector operate unrestrained exposing participants unnecessarily high danger levels absent measures implemented covering operations carried out unregistered entities involved providing aid.

Potential for enhanced cooperation between Commission and NDAP Advocacy Services:

Given presence National Disability Advocacy Program (NDAP) funded advocates located across Queensland ADA Australia suggests greater potential collaboration opportunities existing between commission itself together with these services aimed investigating resolving participant grievances more efficiently. Common frustrations expressed amongst disability advocates relate primarily lack authority wielded despite being situated close enough engage directly both complainants care givers making objective assessments regarding situations encountered regularly; instead they depend entirely upon willingness shown providers cooperate address raised matters adequately without any leverage whatsoever exerted against recalcitrant organizations resistant change.

Wherein organisations committed delivering person-centered approaches may find sufficient influence achieved via advocate involvement leading desired outcomes sought by recipients thereby maintaining advocacy as vital independent support mechanism available even prospective beneficiaries alike however scenarios arise wherein certain establishments display reluctance reviewing internal procedures staff performance becoming defensive dismissive disengaged altogether limiting tools accessible to those trying effect meaningful alterations within system thus creating frustration among supporters who see good intentions fail impact entrenched self-serving behaviors persistently observed elsewhere too often.

Once exhausted limited avenues open before them, one remaining course action left generally involves escalating complaints towards commission hoping investigation might lead imposition stronger pressure onto problematic institutions concerned ultimately achieving resolution satisfactory all parties affected.

Summary

Disability participants need an NDIS Quality and Safeguards Commission that is sufficiently resourced to fulfil its vital function as one of the key system safeguards. Not yet resolved, is how the Commission discharges its obligations to every vulnerable person with disability across the vast service provision landscape from capital and provincial cities to rural and remote communities. It’s not possible to maintain the safeguards in the absence of adequate resources and which may involve a more de-centralized model of operation to position Commission personnel nearer to the sites that they’re responsible for ensuring are safety of recipients.

Ensuring complaints mechanisms, including the role and function of the Commission are more widely promoted in multiple formats to better inform and educate the participant population about how these safety mechanisms are accessible to them. Part of the information and education includes supporting participants understanding of all the mechanisms available to them and how these mechanisms relate to one another.

When do you complain to your direct provider versus complaining to the NDIA or the Commission?
When support has been provided by an unregistered provider, what are the complaints resolution mechanisms which come into play in this situation?
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What happens to a complaint, where does it go, who deals with it and how long will it take?
What are the obligations of the entity managing the complaint to keep the participant informed?
What are the participants options if they remain dissatisfied with a decision?
How does one initiate an appeal and who deals with it?

Submission to Inquiry into the Function and Effectiveness of the Commission

with disability to exercise their basic human rights and their rights as recipients of disability funded supports, we welcome this Inquiry into the function and effectiveness of the Commission by an independent body.

As a rights-based service who has extensive experience across both the aged care and disability sectors in Queensland, we see the fallout when systems safeguards promote themselves as one thing but operate and deliver something quite different, from the perspective of those who sought their support. We see first-hand the fallout when entities that were established to help safeguard consumer rights and for whatever reason fail to fulfil their mandate, regrettably become unwitting agents of abuse themselves to the extent that they’ve gone overlooked or condoned poor care and support practices that entail abuses of rights and power and/or neglect.

When vulnerable recipients reach out for support and systems fail to listen, hear, and then act to support them in ways that promote and uphold their individual and recipient rights, the sense of betrayal by “the system” undermines any future preparedness to engage with it. This loss of confidence in service systems must be prevented through due diligence and delivering on the commitment to safeguard them from violence, able, neglect and exploitation.

Those of us who form part of the safeguards systems have an obligation to deliver exactly that which we promote ourselves as delivering, in order to build trust and promote the values the disability service systems espouse. Until our practices embody and uphold consumer choice and control, dignity and respect, we should not expect to see these values embodied in the day to day practices of those agencies funded to deliver direct care and support. We must embody the courage required to put the participant at the centre of every engagement, listen to them, hear them and represent them with the courage of our convictions. Only then can we ever hope they might place their trust in the systems safeguards.