Gippsland Disability Advocacy
Submission for Joint Standing Committee into Independent Assessments and the NDIS
About Gippsland Disability Advocacy (GDA):
Gippsland Disability Advocacy Inc is a not-for-profit, community based Incorporated Association with a full gift tax recipient status. Funded by the Department of Social Services (DSS) and the Department of Families, Fairness and Housing (DFFH) to provide disability advocacy support across the six Local Government Areas of Gippsland.
GDA’s mission is to advocate, promote, and be responsive to the welfare, rights, and interests of people with disabilities, and to build a more inclusive community.
our vision is that through advocacy, people with disabilities are empowered to exercise their rights.
GDA expects:
The National Disability Insurance Agency (NDIA) to immediately stop the rollout of the Independent Assessment reforms – this MUST happen as a preventative measure to stop harm, damage to the system and risks to lives of Persons with Disabilities (PWD) and carers.
the professionals who know the person must be part of the final report from the IA process to protect against inaccuracies and thus the risks which result from inaccurate conclusions.
greater depth and authenticity of consultation with the people whose lives are affected by this policy, particularly people living with disabilities, carers, and advocacy organisations, particularly for regional areas.
clear explanations about how the IA will translate into funding amounts for Participants, and how regional living will impact funding.
Clear legislation, rules, and operational guidelines about gaining second opinions if the IA has produced an inaccurate account of the person’s functional capacity, such as openness to using the Participant’s existing professionals as established by the outcome of the Ray and NDIA AAT case.
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Better consultation with the people of Gippsland:
That the government and NDIA adheres to the UN Convention for the rights of ipeople living with disabilities as primary values underpinning the NDIS legislation. This includes the right to have input into policies that affect the lives of people with disabilities, the right for having a second opinion (health rights), the right of accurate arepresentation, and the right to access for a diverse range of life experiences that PWD will be excluded from if the IA fails in their task to capture functioning accurately.
Apropriate professionals to be matched to the person’s disabilities or constellation of conditions rather than low experience or expertise
Contingency funding in the event that a Participant’s funding is significantly cut or they are exited from the scheme to protect against risks such as homelessness, unmet health care needs, death, deterioration of functioning, or unmet carer respite needs etc.
All Participants, carers, advocacy and support staff to be provided with awareness- aising training and preparation for how the IA will proceed, in order to understand the IA process. No one should be doing IAs without first receiving information and s \support about this.
That if, during an IA, the Participant or Carer shows a poor capacity to participate in answering questions, the assessment will cease until such time as an advocate can included in the process.
Survey:
GDA conducted a survey of people living with disabilities and carers in Gippsland, about their opinions, experiences and perspectives relating to independent assessments. We are concerned at the impact that IAs will have on our client group.
Carers and Participants
We received 41 responses to our survey of which 25% were people living with a disability and 75% were carers. The statistic on who answers questions is a significant point. When our clients have communication and comprehension challenges, it is their carer or a support worker/professional who answers questions. often this is also an advocates role. Carers in the survey expressed concerns that the IAs would not listen to the carerrs experience and knowledge of the participant. Participants expressed concern that they could not do the assessment without s \upport. This linked to feelings of stress and vulnerability. For example: >
“…how can I know that they will listen to me, her mother, who is the person who knows her needs best?” and;
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“It is also unfair to make our child and us go through all of this again since it has already been assessed and is a tiring and stressful process” and;
“My functioning due to my disability are complex, both physical and mentally stressful. Find it very hard to communicate my needs to a stranger. As I am nonverbal and can only communicate by text messages to the outside world, I would feel ill at ease during the assessment on my own without support. I will be feeling very valuable to be put in a such an environment without support.”
The Disabilities section details findings regarding disabilities within the respondent group.
A total of sixteen respondents reported having more than one disability while seven had over two conditions. Over half (twenty-six) indicated Autism Spectrum Disorder (ASD), with nearly half reporting multiple disabilities (16).
The breakdown includes:
- Acquired Brain Injury: 3
- Intellectual Disability: 5
- Autism Spectrum Disorder: 26
- Psychosocial Disability: 7
- Down Syndrome: 2
- Physical Disability: 5
- Hearing Impairment: 1
- Chronic Disabling Conditions: 5
- Developmental Delay: 3
- Cerebral Palsy: 3
- Epilepsy: 1
The data indicates that individuals facing multifaceted challenges related to numerous or uniquely presented disabilities—such as ASD spectrums or episodic depression—express concerns about the effectiveness and impact of Independent Assessments (IA) on NDIS planning/funding and participant lives. It is anticipated that generalized IA procedures involving yes/no responses, limited answer options, conducted by non-specialized practitioners – for example, a physiotherapist assessing someone autistic - may not adequately serve those living with disabilities nor their carers’. This raises questions regarding potential risks if funding proves insufficient due to inappropriate assessment methods.
A failure in this regard would result in the National Disability Insurance Scheme failing its objectives.
The following comments are provided as examples:
“…my son presents to other people as if there were no struggles for him; he masks at every turn at school and in the community. An independent assessor would not get a good reflection of his struggles”, and;
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“My daughters’ disability and needs associated with it were and continue to be assessed over many hours by a team of health professionals. There is no way you could get a clear picture of our situation from one short visit from one unknown health visitor”, and;
“A onetime assessment, even an assessment over a short timeframe does not allow the opportunity for assessors who don’t know you and how your conditions affect you, to accurately assess your ability to function every day. This is especially the case when you have varying severity of your condition and its symptoms. My condition is affected by heat, by various atmospheric pressures, by loud noises and busy environments, by the time of day, by my posture, by my fluid intake, etc. From what I have read about the independent assessments they appear to ask closed questions and require you to conduct a task. This gives no ability to explain your abilities/disabilities, and to cover a varying disability with varying symptoms with varying severity.”
A reform awareness
We asked if the respondents knew about the NDIS reforms relating to IAs. Although 72.5% answered YES, 27.5% responded NO. This is a concern to GDA. We believe that all Participants should know about the IA reforms. The government are making extensive changes to disability supports and this will impact the lives of our clients and Gippsland community members with disabilities. The government and NDIA need to conduct a thorough awareness-raising campaign about the changes to the NDIS which will affect Participants and Carers. A little over a quarter of our survey respondents were unaware of IA reforms, therefore they cannot act towards their own interests, needs and rights. This right is enshrined in human rights documents and the NDIS’s own underlying principles and objectives. Some of our clients need disability support to learn about and understand the NDIS reforms, and to take action to protect and enact their human rights. This means that considerable effort and planning is needed to help our clients participate fully in their civil life and human rights; thus this new policy requires far more consultation and time.
Understanding IA Policy
We asked respondents to consider “how would you rate your understanding of independent assessments and how they will affect you?” The breakdown of responses is:
- Extremely aware: 11%
- Very aware: 33%
- Somewhat aware: 22%
- Not so aware: 14%
- Not at all aware: 19%
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Independent Assessments Submission
We consider the Extremely and very aware categories to be a more successful indicator that there is adequate awareness within our client base; this only applies to 44% of our survey respondents. There were 33% of respondents with poor levels of understanding (Not so aware, not at all aware). This data is extremely concerning to GDA as an advocacy organisation which seeks to empower the lives of people living with disabilities in our region. This indicates a high level of vulnerability to such clients where the IA could be harmful, lead to poor results, fail to represent true lived experience, and have outcomes of inadequate funding and supports. This indicates that the NDIA need to act now to increase people’s awareness of new reform directions and the impacts these will have on our clients. The NDIS was designed as an innovative new approach to disability supports where people living with disabilities would receive supports relevant to their unique circumstances, aspirations, and individual disability-related functional capacity. The NDIS was intended to provide people with the supports that they need. This IA reform shifts the NDIS away from its original purpose, with the government now seeming to desire a one-size fits all, blanket approach to funding. This apparent attitudinal shift is something that all NDIS participants, carers, and disability stakeholders should know about in-depth. People already feel the impact of poor funding, they need to understand how IAs can impact them. Advocacy organisations also need to have funding and clear information and explanations about the IA process so we can support our clients effectively throughout the implementation of the new policy.
“It is especially worrying when you do not get what you need and then appeal that decision, and the outcome of that appeal may be less than what you were offered. It should be you can appeal, and you will not be worse off. The new independent assessments cannot be appealed which is atrocious. The NDIS was meant to enable people to get supports to meet their needs, and we were told no one would be worse off than the plan they were currently on. This is not the case.”
A Pilot
When asked if anyone in Gippsland had participated in the IA pilot, we had 10% of respondents say yes and 90% say no. We invited respondents to explain to us why they chose to participate or not, in the pilot. Of the four people who answered YES to being part of a pilot, only one had completed an IA through the pilot. Two respondents were waiting to participate with one of those unable to get an advocate for support, and one answer was a confusion with their previous IA AAT case and not about the IA pilot. GDA therefore struggled to gain data about the participation rate for the IA pilot within the Gippsland region. We would be concerned if Gippsland had poor representation in the IA pilot.
The five respondents intentionally chose to not participate in the IA pilot; they all mentioned anticipated negative impacts to the IA which influenced their decision.
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is already complicated and full of pressure, with the IA perceived as more pressure and that autism is an individualised disability where the report would be inaccurate. In respondents’ own words:
“I object to unknown assessors entering my home and assessing my children when we have spent years working with highly skilled allied health professionals who provide the NDis with detailed reports on my children’s disability and capacity” and;
“I’m concerned our funding would be completely cut” and;
“My son’s functioning can seem high, but he needs a lot of support still, he also has poor insight into the way his disability affects his life and often thinks he can do more than he actually can. I am worried he will get an inaccurate report and therefore lower funding. He gets depression and suicidal sometimes, my worst fear is he will stop getting supports and suicide.”
Two respondents approached the IA pilot as a method for increasing their awareness about the policy so that they can prepare for the rollout and advocate for family members more effectively. This illustrates that carers understand that they have a very significant role to play in supporting their family members to obtain accurate reports and correct funding amounts/supports. In respondents’ words:
“To gain further awareness to advocate for my son who is PWD”, and;
“I wanted to see what it was about to make sure I was ready for the rollout. It is a very bad program; the assessor has no knowledge apart from on specialist therapy and is expected to answer questions outside their field of training.”
Two respondents appeared to believe that people would be invited to participate in the IA pilot, while two others answered that they were not aware of a pilot or had not looked into the pilot yet. These responses relate to themes above where GDA claim that there needs tobe effective awareness-raising and education about the IA pilot and the IA policy in Gippsland, and that to date, the NDIA has not done so effectively, or the NDIA’s efforts are not reflected in our data. These responses show that carers are open to awareness-raising, learning advocacy skills, and education approaches about the NDis. GDA expect this is worthy of a targeted program to support people with disabilities and their carers’ in relation to IA reforms and how to obtain the correct funding levels.
GDA highlight that our experience of the existing NDIS system, is that the Ndis is a complex and oftentimes confusing system. People frequently do not receive the appropriate supports with very serious consequences such as losing housing, extreme social isolation/exclusion, death, deterioration in capacity, and carer ill- health/burnout. A great deal of effort from allied health professionals, advocates, and lawyers is necessary in order to gain clients outcomes matched to their true documented need and aligned to current NDIS legislation. Much of GDAs efforts are applied to empowerment, education and coaching in order to support Participants
Independent Assessments Submission 274
A pilot experience IA
The survey asked respondents’ experiences regarding the IA pilot; one detailed response forms an example case study as follows:
the Participant has a hearing impairment alongside other functional challenges affecting behaviour and emotion regulation.
Firstly there were issues scheduling assessment - company organised appointment suiting family circumstances (transporting children school) however assessor failed make contact agreed time. Company didn’t provide carer information check what was happening. Carer received email reschedule assessment. Parent experienced frustration reported feeling that company did not understand life of busy families with demands appointments etc.. The participant sees several therapists specialists during any given week therefore it challenging find time for IA.
in second IA appointment, sent confirmation email reminder but appointed time wrong. Assessment conducted via Zoom Perth-based assessor included three parts first part comprising typical annual review questions.
this stated following “red flags” because concerned about schooling/home environments worried why questioned NDIS doesn’t fund disability needs education system. Stated safety home equipment suitability could be misused NDIA without involvement carers parents participants: “He then went on to ask about the home is suitable X? Is safe? Does have appropriate?”. Hearing deaf removed homes these raise so many questions asking would inform authorities take child if unsuitable?”
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The IA asked questions about the NDIS participant functioning in the community, but the carer/parent reported to the advocate that the questions were very directed owards only the deafness and there was no opportunity to share information with the IA about the other ways her child is impacted by his disabilities. This makes the IA idea appear to be a shallow, simplistic approach to capturing a participant’s unctional capacity.
“Our child is deaf, so being in the community he is often misunderstood as his speech is not age appropriate. This was not mentioned at all in the questions asked. Not once did he ask if the child communicate and be understood in the community? Instead, it was questions like does he climb up and down kerbs on his own? Does he go up and down stairs on his own?”
The carer listened to and answered mental health questions. These appear to haveeen quite confronting for the carer: “The last section was about mental health, with some very heavy and serious questions at the end, such as has x threatened to kill you or himself? Has x attempted to cut or hurt himself on purpose?
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And intellectual development.” We expect that early intervention for children will prevent many longer-term problems and increase quality of life and outcomes in the longer term. Any policies and reforms that the government institute should align to these principles and lead to a representation of Participants’ functional capacity that is accurate, which leads to correct support funding, and thus empowers Participants to meet the above guiding principle.
IA appears to only have a capacity to assess one disability and fails to capture life stories where there are multiple issues going on; the NDIS is about a person holistically, and AAT cases have been published that confirm the NDIA has a responsibility to support the person holistically. The above case study shows the weaknesses with a linear approach to answering questions in a manner that excludes other topics, themes, issues, and support/needs areas. Comprehensive information is necessary to form an accurate report, particularly when that report will directly influence support funding amounts. It is highly likely that the most complex, multidimensional contexts and needy people will receive NDIS plans that totally fail to fully support the participant. Their NDIS plans will only address the disability line of function that the assessment tick boxes, closed questions, and flow charts allow. However, the NDis had responsibility to totally fund a support as established through Appeal cases such as McGarrigle, and to adopt a holistic approach. The above case study illustrate that this child is already not experiencing the expected support approach. IA methodology should not disadvantage the most vulnerable in our community.
our clients already report significant concerns with how the NDIA communicate and respond to them. Oftentimes this is such a difficult endeavour that we need to escalate serious cases or involve our local Members of Parliament. We hear reports of NDIS representatives phoning up and saying, “let’s just have a chat about the Ndis” and then the client receives an NDIS plan where there was no full disclosure about the ramifications of that
Independent Assessments
Submission 274
The high-profile Ray and NDIA was a Gippsland case. In that case, the IA travelled from Queensland to a regional home in Victoria. Our client and her carer reported that the IA kept saying that she was so tired from travelling, and that assessments do not usually take this long. These are comments and behaviours that we do not expect from quality professionals. It was difficult for the advocate involved to make complaints and check the quality, expertise and training of the IA involved, or to pursue any avenue for making complaints and having the relevant professional be held to account for her low-quality work. That assessor wrote a report that failed to include the information, comments, experiences, and needs provided to her by Ms Ray, her carer’, and a support worker. That assessor`failed to identify autism challenges that Ms Ray exhibited and appeared to downplay struggles of which Ms Ray directly communicated. That assessor’s report was also vastly different to all other reports from professionals who worked regularly with Ms Ray and who had a deeper understanding of her functional capacity and support needs across multiple years. That case resulted in Ms Ray missing out on important disability supports for years directly because of the inaccuracy of the IA assessment. We are concerned that that scenario will become a regular occurrence.
Coping with an IA – a negative story
When asked about how participants anticipate they would cope with an IA the result was extremely negative and thus concerning for GDA. The responses for “Negative” and “Extremely negative” made up 84.5% of the responses. Only 3% stated positive. Some themes from the text provided includes risk/damage to the person, dependence on the professional’s skills and qualifications, causing triggering and anxiety, the stranger aspect being a barrier to communication, it is demeaning to keep discussing issues about the person in front of them or to keep repeating issues over many years, that funding will be cut, and that the assessor will not understand the person’s full story. One person stated that perhaps the IA would reveal more information about their child. In their words:
“Would cause great anxiety for my daughter, would make her feel that she is somehow ‘less’ of a person because she ‘fails’ to function in a typical way. She would not want to interact with a stranger“ an d;
“Not only negative, but it would be damaging to my son who experiences severe behavioural episodes and ongoing trauma responses with medical or other appointments that he is a. Unfamiliar with and b. Who discuss him personally and ask him personal questions? This behaviour can often be aggressive and violent and
take many months of therapy to return to previous levels of trust with health professionals“ and;
“He will have to hear me telling the assessor all the things he cannot do and why he needs support.”
“When you have a lifelong condition, and have had it for over 20 years, your assessments should be similar to the accessible parking permit application process. You reapply every 5 years, and it is automatic that you receive it.”
- errors that negatively impact our clients.
In one instance, an NDIA representative justified her stance/argument by saying our client could simply “catch a tram” rather than use other transport options – however Gippsland has no trams as public transport options. The NDIA’s representative was ignorant to lived experience in Gippsland and was blocking necessary supports for our client. Our clients are consistently having their NDIS funds cut due to underspending, and yet the reason for their lack of utilisation of plans, is NOT the lack of support need (as argued by NDIA delegates outside our region), but due to chronic shortages of multiple types of disability support services from general support workers and psychosocial support programs to occupational therapists and speech therapists. This disadvantages our clients who then need to do review and appeals due to poor decision-making by non-locals without knowledge of Gippsland’s issues. This is a totally avoidable problem.
GDA is concerned that similar problems will result from the IA process.
It can be anticipated that the IA reform will result in Participants having their NDIS funding reduced or in some cases being exited from the Scheme altogether. It will be GDA’s role to support with the reviews and appeals which will inevitably follow. GDA would require substantial increases to our Appeals funding in order to meet the anticipated increase in demands due to this reform.
Additionally, this reform can reasonably be expected to create new gaps in support service provision. Gippsland already experiences well-documented thin markets for NDIS participants. What services and funding streams will be available to meet the support needs of those exited from the NDIS? Failure to plan for and create supports for all degrees of disability will create additional gaps and dimensions of disadvantage. Being a regional to remote area Gippsland already experiences a dimension of disadvantage at the best of times. How will this issue be dealt with by disability policy makers?
Gipplanders experience their own constellation of support needs that are unique to regional, rural and remote lifestyles and how geography impacts uniquely on individual, family, community levels of society. The strength of the existing NDIS structure, is that if implemented according to the objects and principles underlying the Act, people’s supports are tailored and individualised to their own circumstances and contexts. The IA reforms work against those strengths of the NDIS. In doing so, IA reforms disproportionately disadvantage Gippslanders. The tram example above illustrates this. How can the government and NDIA ensure that Participants will not be disadvantaged and left in serious, sometimes life-threatening situations due to them not having correct supports and funding to address complexities with having a disability in Gippsland?
Gippsland is recognised as a region with thin markets, high demand for service provision and yet shortages in skilled, specialised support workers, allied health professionals and poor depth in diversity of support options. This already impacts the
way participants can utilise their NDI funds towards their goals, aspirations,
independence and realising their potential and human rights.
If IAs are introduced there are at least two areas of concern for thin market regions. Firstly, is the issue of where the independent assessor workforce will come from – if they are locals then this places even greater strain on an already compromised market system and can reasonably be expected to cause Participants to struggle accessing supports, leaving people without professionals and at risk of deterioration of functioning and vulnerabilities. None of which are desirable outcomes. Secondly in the event that the IA policy acts to exit/revoke Participants from NDIS access, this is going to create a cohort of people living with significant disabilities and functional impairments who then have no support. The existing support systems do not accommodate these people, there are already service gaps for people with functional impairments but not meeting NDIS access, exiting people from the NDIS will produce a new support and funding problem. The gap will leave vulnerable people with increased risks and poorer outcomes. This will be the case wherever people are excited from NDIS, but the effect will be more strongly felt in a regional place such as Gippsland where there already are inadequate services. If the government pursue this policy the government also needs to create new funding sources/pathways for these gap victims of the reforms.
Gippsland Disability Advocacy
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