Independent Assessments

Submission 259

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Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600 dis.sen@aph.gov.au

Dear Committee Members,

Re: Inquiry into independent assessments under the NDIS.

I represent people across Australia who have Prader-Willi Syndrome (PWS), their parents and supporters. I am responding to the Committee’s invitation to make a submission¹. People with PWS, their families and supports are angry and frightened by the situation with Independent Assessments; by both what has happened already and what is going to happen.

Prader-Willi Syndrome (PWS) is a rare, life-threatening condition. It is a complex, multistage genetic disorder affecting multiple systems in the body. It significantly impacts behaviour, learning, mental and physical health. As such, people with PWS have a great need for NDI support from a wide variety of disability service types including daily living community access and allied health. Participants with PWS typically have an intellectual disability and poor executive brain function which severely limits their ability to discern plan organize and self- mange.

The PWSA believes that because of the complexity and multidisciplinary nature of the PWS disability, it will not accept that the new Independent Assessment (IA) model delivers on appropriate supports (and human rights). There’s significant risk IA won’t correctly identify breadth or depth functional impairment caused by PWS nor capture adequate information upon making sound safe conclusion about needed supports therefore providing appropriate budget.

A copy of this submission attached supplements below provided information.

Therefore the PWS community rejects proposed IA model urges you protect intent NDIS vulnerable citizens whom designed assist stop rollout current form must introduced unless robust academic evidence demonstrates delivery promise. At present seems manipulation operation NDIS force fit IA model.

¹ JSC Inquiry details: https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/IndependentAssessments

Pader-Willi Syndrome Australia PO Box 377 Kew, Vic. 3100 | ABN 26 483 903 1800 w. www.pws.org.au | e info@pws.org.au| p. 1800 797 287

Independent Assessments

Submission 259

The PWSA has concluded that:

a) The reasons given by the NDIA for the structure of the IA model are not sound. Nor will the model address the problems the NDIA claims it will – see attachment for details. b) It has been the experience of people with PWS that States and Territories have rapidly wound down disability services that were offered before the NDIS. For example, there aren’t longer government-employed disability case workers to have responsibility for the holistic welfare of disabled people with complex needs. The NDIS does not give a budget for this service either. Therefore, it is of grave concern that if poorly conceived Independent Assessments in the NDIS further erode a person’s budget, more service gaps will be created, and the welfare of people with PWS will be at greater risk.

Also, it has been reported that a similar method of assessment in the UK² has led to cuts in the budgets of disabled people who have already demonstrated a need for a certain level of support. This has resulted in many successful appeals. But an appeal process should not be the solution to a poorly formed assessment process; it makes life even harder for vulnerable disabled people and is a waste of tax-payers money. An assessment process should be effective in its first application, and assessments must include equal input from professionals who know the individual over time and in their context. c) A huge public expense is being incurred by using contracted private companies to do the assessments. They have become ‘the middle man’, with nothing visible as value for the taxpayer or in delivering the objectives of the NDS. There isn’t transparency about how such businesses are accountable to Participants or taxpayers. It seems that people who used to work in NDIA now manage or own assessing companies – pointing towards conflict of interest when shaping/deciding on new IA model so perceived tainted favouring assessors & NDIA rather than objective delivery. d) One assessor specialty won’t examine needs across functional domains - PWSA doesn’t perceive them independent either: true independence achieved if:

“Complaints about disability benefit assessments up 6000% in three years” https://www.independent.co.uk/news/uk/home-news/disability-benefit-assessment-complain-uk-government-a8894341.html

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The Participant gets to choose their assessor from the open market. See the attachment for details. e) The tools are not fit for purpose, neither to identify the true level of impairment or identify a budget – see the attachment for details. f) It is agreed that some community members may want to use a government appointed assessor if it is difficult to get eligibility assessments from elsewhere. That does not mean a flawed IA model should be used, nor should the government IA supplier be mandatory. g) Planning and goals should be used to contribute to total budget identification, not just how to apportion a pre-determined budget – See attachment for details. h) People with intellectual disabilities and/or complex and challenging needs should not be required to do an Independent Assessment. They cannot adequately represent themselves, given the potential consequences of misunderstood questions, or answers given, that don’t encompass their functional reality. For example, people with PWS may seem articulate but they often confabulate. Only professionals who know them would recognise truth from fiction during an assessment process. i) It seems that the IA model removes a fair appeals process, by excluding the decision from reviewable decisions. This is unacceptable to PWSA and a human rights issue. See attachment for details. j) The IAs are unlikely to be able to deliver consistency across cohorts, eg multicultural k) Adults with PWS have a higher incidence of psychosocial disability than the average population. This is yet another complexity of the disability. Their level of insight and volition can ebb and flow and so their performance in a short, one off assessment won’t reflect their true level of impairment. For example, if they have been receiving good support, they may perform well on a test. But if the test result caused the supports to be decreased or removed, the level of impairment would escalate back to its actual level. Setting a vulnerable person up to fail, through an inadequate budget is not the intent of the NDIS. l) People with PWS have varied and fluctuating impairment, on a day to day basis, depending on their level of anxiety. So, again the IA model is not suitable for them.

In conclusion, PWSA urges the Committee to reject the Independent Assessment model. The roll out must stop and changes to the Legislation must not occur, including to the reasonable and necessary provisions. Academic research is needed to correctly identify current problems with the Scheme, and then to generate some proven solutions.

I would be happy to discuss our concerns with you, and provide more evidence, if applicable.

Yours sincerely, James O’Brien, Chair w. www.pws.org.au | e. info@pws.org.au | p. 1800 797 287

Consultation Manager

National Disability Insurance Agency Geelong, Victoria, 3220 https://myform.apps.ndia.gov.au/?src=https://forms.apps.ndia.gov.au/jpgbthlbzknpuvv/ndisconsultation&org=ndis&theme=ndis

deeply concerned with this issue and have raised it in several forums.

Dear Sir/Madam,

Re: Consultation on Access and Eligibility Policy with Independent Assessments

I represent people across Australia who have Prader-Willi Syndrome (PWS), their parents and supporters.

Prader-Willi Syndrome (PWS) is a rare, life-threatening condition. It is a complex, multistage genetic disorder affecting multiple systems in the body. It significantly impacts on behavior, learning, mental and physical health. As such, people with PWS have a great need for NDIS support, from a wide variety of service provider types, including disability, and allied health due to their disability. People with PWS typically have an intellectual disability, poor executive brain function and other impairments resulting in ‘extreme’ functional impairment. This severely limits their ability to discern, plan, organize and self-manage.

PWS is a spectrum disorder. That is, people may be more or less effected by its various characteristics. Nevertheless, even the most high functioning individuals need a very significant level of support to avoid an untimely death.

I am writing to let you know about serious concerns and reservations we have about the use of Independent Assessments (‘IAs’) for accessing the NDIS and for periodic reviews of entitlement, as described in the consultation Paper1. The issues are followed by our recommendations.

Issues

a) The NDIA’s proposed changes are based on unsound foundations.

The IA measurement tools are inappropriate for the complexity of PWS. The NDIA is proposing that every individual has to be assessed with the same limited, blunt instruments. I reiterate that PWS is a multi-faceted disability and the constraints of limited instruments, and a single profession assessor will not be able to detect the true scope of functional impairments impacting a person with PWS. The Tune Review states that “…particular individual circumstances where it is more appropriate for non-NDIA approved providers to undertake the assessments. In addition, functional capacity assessments would not always be required, for instance if a participant’s functional capacity is stable.” Tune also noted that the NDIS should ”... allow evidence provided to the NDIA about a prospective participant or participant to be used for multiple purposes under the NDIS Act, including access…"

Independent Assessments

Submission 259

The PWS community knows from lived experience.

b) The length of time taken for the Independent Assessment described is not enough to determine the breadth and depth of impairments for a person with PWS.

The PWS community knows, from lived experience, that a single practitioner type cannot address the wide scope of variable and compounding impairments that intensify the negative impacts in Prader-Willi Syndrome. Additionally, the questions in the IA will not allow for an exploration of the depth of the problems, the intensity of which ebbs and flows during the year. The Tune Review noted that “…some professionals indicating it can take up to 20 hours to prepare the required documentation” for people with psychosocial disability (which has a higher prevalence in PWS than the general population) not to mention all the other functional impairments, such as the failure of executive brain function.

c) Tune Review has been misused

The NDIA and the Minister seem to be promoting that the Tune Review suggested mandatorily using NDIA approved assessors. However, the Tune Review³ actually states that the “NDIA should not implement a closed or deliberatively limited panel of providers to undertake functional capacity assessments,” and … d) The assessors as proposed are not truly independent.

We can see that very few businesses will be doing the IAs, and the participants will not be able to choose an assessor. We feel that the assessor will be an agent of the NDIA, working in the interests of the NDIA, and not the disabled citizen. This bias is illustrated in a promotional video by APM⁴ (who are running the NDIS pilots and a forerunner for the rollout) called “Who is APM’ which says in part that they have “…a focus to exceed the expectations of Governments…”. If such assessors are engaged through an NDIA tender, it is unlikely that they can be really independent. Their income is directly from the NDIA and presumably they will want to win the tender again. This puts them in a conflict of interest position, and not ‘independent’ as far as we can ascertain. e) Commercial pressures on assessors means they cannot meet the‘independence’expectations of the PWSA community

Undoubtedly, there will be Key Performance Indicators in the Assessor’s contract. It has been indicated that this will include required average assessment times and number of

² ‘In search of an integrative measure of functioning’, Madden,R.H et al (2015) https://pubmed.ncbi.nlm.nih.gov/26016438/ ³ Tune Review available at https://www.dss.gov.au/sites/default/files/documents/01_2020/ndis-act-review-final- saccessibility-and-prepared-publishing1.pdf ⁴ Who is APM video, Jan 2021 https://www.youtube.com/watch?v=J8rEQHqAXgA

Independent Assessments

Submission 259

The assessments completed in a period. These KPIs are interpreted by the PWSA community as putting pressure on the assessment provider to do hasty assessments, and use assessors who are inexperienced in disability. Both features will result in poor quality assessments.

Poor quality and blatant errors have already been experienced in the Plans of people with PWS delivered by current LACs and NDIA planners who were subject to the same types of pressure features.

It has been reported in the disability media that part of the Government’s goal with the Independent Assessment is to drive down costs. This will be an added incentive for the assessor to avoid identifying the more complicated, less visible and less understood (expensive) functional impairments, such as occur in Prader-Willi Syndrome. For the PWS community, ‘independent’ means that a provider is free of pressures from the entity that is paying their wages. And that the applicant, or Participant, can choose their own providers to conduct assessments and deliver reports.

P WSA also notes that in his speech, Minister Robert said¹ “The insurance program will shift the conversation between NDIS planners, local area coordinators, participants and their families from what is in and out of a plan, to a conversation about how best to utilise a plan budget to achieve a participant’s goals.” This is concerning because it is no longer clear how the budget will be derived. It looks like another reason why assessors will be focused on potential costs rather than the actual needs of the participant or applicant.

f) PWSA does not trust the Government and NDIA’s messaging about Independent Assessments.

p 3 There is a lack of transparency, consultation and collaboration in the policy change. The results of the pilots have been obfuscated and experienced sector advocacy organisations, like VALID², have identified serious flaws in the development process for the model.

The NDIA claims the IAs will not result in lower budgets for existing participants compared with assessments already made based on professional reports. There is no evidence of the impacts on budgets of existing Participants, as the results of the pilot have not been released. And the sample size was too small to be meaningful for people with complex disabilities like PWS.

The results of the IA will not be shared with the Participant. This is completely inappropriate and patronizing to the Participant. Participants always have access to their service providers’ reports about them. The information given belongs to the Applicant/Participant. Provision of “a summary only”, is unacceptable to the PWS community.

in terms of the checks and balances have been removed from this policy. The right of appeal to the AAT, on a major ‘plank’ of the system will effectively been removed. Additionally, the policy to move decisions about ‘reasonable and necessary’ from the NDIA where the individual is recognised is another loss of choice and

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Independent Assessments Submission 259

The control for the participant. The intent of the NDIS will be thwarted if this flawed Independent Assessment policy and ‘reasonable and necessary’ changes are moved into Legislation.

It is unclear to the community as to the suitability of the individual assessors to conduct the assessments. There is no transparency about their disability experience or whether their specialty will be matched with the type of disability being assessed. Given the shortage of some allied health providers already, there is a risk that the IAs will be conducted by a disproportionately high number of new graduates.

The fact that the Government and the NDIA have moved so far down the path of implementation, including opening the Tender for conducting IAs, seems like this current consultation is an afterthought. The PWSA impression is that the NDIA has no intention of making any material changes based on the feedback, as it is already too far committed to other stakeholders.

g) The NDIA policy is silent on many questions the PWSA has. Therefore PWSA does not support the policy as it stands. Answers are needed:

• Will the IAs be the only evidence used to establish eligibility for the NDIS? What if people have other assessments and evidence? How will they be included? Will other substantive evidence be given equal weighting in any final decision making regarding eligibility for NDIS?
• Will the IAs be the only thing to determine plan budgets? How will the individual circumstances of people with PWS be identified? That is, they are individuals and need support to live in their own contexts. Even though the disability is the same, people live in different circumstances.
• People with PWS often have multiple disabilities, for example mental illness as well. How will the IA’s be able to address that impact? That is, the mismanagement (underfunding) of one disability exacerbates the intensity of the others, to the detriment of the person with PWS. ‘The whole functional impairment is greater than the sum of the separate disabilities.’
• Why were people with PWS and their informal supports or Nominees not consulted before deciding that IAs would deliver a better outcome for them? This is a particular concern when there is international evidence that PWS, as one of the most complex and challenging disabilities, takes specialist skills and experience to assess and support.
• Where is the evidence that this type of IA results in better outcomes for people with PWS and disabled Australians in general? PWSA disagrees with these IA screening tools being used to decide funding as well.
• Why is there such a hurry to implement the IA model? Why have the recommendations of the Tune Review been used selectively, thereby disrupting benefit of the recommended solution delivered in its entirety?
• What is the Government’s promise that people with PWS will not be worse off? At present, due to lack of evidence about better outcomes from this model (

Independent Assessments

Submission 259

The ‘satisfaction’ about a process rather than the outcome surveys), it looks like a cost cutting exercise. It could inappropriately reduce access to the scheme for children with PWS, and reduce support for existing NDIS participants. PWSA notes that OPA⁷ in Victoria is concerned that the approach will have a result “where assessors are biased towards reducing the supports a participant can access”.

People with PWS cannot live independently. Therefore, many of them live in Specialist Disability Accommodation (SDA, like group homes) with Supported Independent Living (SIL) Services. How will the results of IA’s impact people who currently live in SDA’s with SIL? What would happen to those residents if the IAs suddenly concluded that the person did not have enough budget to continue living in their home? Where would they go when they are disability pensioners and there is no affordable housing available? What if they don’t get a SIL budget and adequate supports to manage their challenging Behaviours of Concern? PWSA expects that the NDIA will be proactive in its budget allocation and allow for PWS trained support staff are in place so that Reportable Incidents, and lesser incidents of a predictive and escalating nature, do not occur. People with PWS should not be forced out of their SDA because they are functioning more effective with their scaffolding of support. If that scaffolding were removed their functioning would decline. It is not appropriate that people with PWS face major accommodation upheavals during their life as the level of functioning goes up and down. Continuity of stable accommodation is what will help them to function better in other aspects of their life.

How will safety and welfare be built into the assessments? For example, a person with PWS may be able to travel on a well know public transport route, on days without transport disruptions, during the day. But when there are sudden changes to routine and predictable events, the person’s ability to safely and independently complete the task cannot be assumed to apply to all situations, across all settings . If there is a transport disruption anxiety levels will peak and there may be a behavioural outburst. The person would not be safe travelling at night because of being vulnerable to interference from antisocial members of the community and needs budget for alternative transport arrangements. Most individuals with PWS require support to access the community, however some can usually walk in the street unsupported. But they have poor body temperature regulation. So, walking out on days of temperature extremes can have serious health impacts. A person with PWS may be able to use a mobile phone for routine functions. But when it comes to calling a taxi on a dark, cold night in from an unfamiliar location, with heightened anxiety, they cannot bring enough functioning to bear to actually get to use a taxi. How will the IA detect and address such examples?

h) NDIA is putting duress on Participants and informal supports The approach in the policy is excessive for people with PWS who have already proved their eligibility and functional impairment levels.

A statement https://www.publicadvocate.vic.gov.au/media-centre/415-opa-position-statement-ndis-"independent assessments“

Independent Assessments Submission 259

PWSA Prader-Willi Syndrome Australia Support | Information | Advocacy

People with PWS suffer from high anxiety as part of their disability, which leads to challenging behaviours. Making them do more unnecessary bureaucratic processes that they can barely understand and puts their supports at risk, for no better outcome, is frightening for them.

i) The IA states it will ‘deliver simpler, faster and fairer approach for determining…’ but that approach is not helpful for people with PWS.

P WSA does not agree that a “simpler” approach will lead to better outcomes for people with PWS. PWS is a complex and challenging disability. A simple approach will not be able to properly identify functional impairments and subsequent reasonable and necessary supports. A ‘fast’ approach is not sought by people with PWS and their supporters, as it risks a substandard result. Nor does the PWS community agree that legislating for IAs is a fairer approach. It would only be fairer if it was optional; whoever wanted to take advantage of the Government provided IA could, and others could supply their assessment via a provider of their own choice if they preferred. Since the claim by the NDIA is that the tools are in wide use, many other providers could apply them. Also using one assessment alone is not fair. Whilst the Government provider could be one assessment, it must not be the sole assessment tool. For PWS, there will be many assessments based on the wide variety of functional impairments caused by this disability.

j) The IA approach fails to recognise that the NDIS Act requires that all participants are enabled to exercise choice and control in the pursuit of their goals.

The IA does not take into account the person’s goals or allow them a choice of who will do their assessment. Nor does it allow for multiple assessments that the person with PWS requires in order to present a comprehensive picture about the complexities of dysfunction in this disability.

The NDIS has put out a Charter. It says the NDIA will empower people with disability by recognising the individual’s experience and acknowledging that participants are experts in their own lives. Where people have a complex disability resulting in extreme functional impairment, they have a variety of their own specialists who have supported them in that life. Indeed, often the same tools have already been used for PWS Participants. Those pre-existing supports and assessment results must not be ignored in the development of Participant budgets.

The Government must not change the Act to legislate what is ‘reasonable and necessary’ because this will undermine the ability to offer varied, individualized and integrated supports. There is plenty of evidence that even the current process of NDIS planning and budgeting is inadequate for assisting people with PWS. The consequences of this have resulted in people with PWS inappropriately being placed in mental health wards, prison, nursing homes or isolated domestic arrangements by default .

One of the major flaws with the current planning process is the lack of transparency . Those that have been effected have not been allowed to see a draft of their Plan. There have often been errors. The IA, that will not be shared as a draft or even when complete is just a

w.

Independent Assessments

Submission 259

The repeat of the same issue. The same problem has been identified with the Personal Independence Payment process in the UK. An anonymous, production-line assessor often makes mistakes in the assessment and do not give adequate consideration to the applicants reports from their own providers. And the process makes it very difficult for participants to have their voice heard. The difficulty will be even greater for people with cognitive impairments across multiple domains, and domains that are interactive, like those with PWS who will not realise their support is inadequate or understand how to seek amends.

k) The IA process as proposed will not work for people with PWS due to its complex and multi- faceted nature

PWS is a genetic condition; the baseline of functioning will not change substantially in adulthood from what has already been identified previously .

PWS is known internationally to be a very complex disability requiring specialist support because appearances are deceiving. Their initial presentation is of a person who has less impairment than is in fact the case. A multidisciplinary assessment team is needed to take into account all dimensions of their disability, in breadth and depth.

People with PWS have failures in executive brain function, for example with planning and organising. At the same time they exhibit confabulation and lack insight. It is well documented by experts in the field including the International PWS Organisation⁸ that they are not reliable reporters of their own condition.

They also strive to be their best and like to please particularly people they perceive to be in a position of authority. This tendency to try to please the person in authority (ie the NDIA assessor ) will mean they will answer according to what they think the assessor wants to hear. The response may bear no semblance to the true level of their functioning in a given range of activities or routines. They will not be aware of their limitation but if so, they will not want to embarrass themselves by speaking about their problems, not realizing the implications for their assessment outcome.

Because of the disability all people with PWS live with a level of support. Therefore, the Independent Assessment will not be able to uncover what the individual’s capacity would be if there were no supports in place. It will appear to the assessor as if the person is functioning at a higher level than is the reality.

A redacted: s47F - personal privacy an example of the consequences of the planning and organizing impairment is the following:

The person has reasonable speaking skills. If asked whether they can hang out the washing the answer would be ‘yes’. That’s because usually their arms and legs do work. However, can they do the task of ‘the laundry’, more than likely not. Despite having been taught and knowing the theory it will not reliably be put into action. The Participant cannot effectively

⁸ How to avoid misleading information being received - IPWSO https://ipwso.org/information-for-families/adult-life/meeting-with-professionals/ w. www.pws.org.au | e. info@pws.org.au | p. 1800 797 287

Independent Assessments

Submission 259

The PWSA Proader-Will Syndrome Australia Support | Information | Advocacy

self-manage activities of daily living. Doing a load of washing cannot be reliably planned, organized, initiated or completed. (For example, the sufferer might know that in ahoushold, laundry needs to be done. But that does not mean it will be done ina functionally affective way. Dirty clothes are known to pile up indefinitelyand then re-worn; Ifa load makes it as far as the washer, detergent mayor maynot be available. Wet clothesmay be left in a dryer to go mouldy. And iftheload getsas farthe line,it couldbeleftoutside for days todeteriorate. It may not make it back into the cupboard either, despitebest intentions.)

Emotional lability is a key characteristic. Behaviours of concern severely impact the person’soverall functional level, which might be strongerin other areas. So, from dayto day the behavioursmight bemild orextreme(police intervention). A one off assessmentis noting goingidentify the peaks and troughs of impairment orthesophisticated skills neededtosupport avolatile character.

People with PWS commonly have vivid fantasy life,which, combinedwith thecharacteristic confabulation means theywill embellish their capabilities. This generates arisk duringanassessmentby astrangerthat functioningis over-estimated andtheyw ill not getthe budget (andtherefore services) theyneed tos urvive.

Some people with PWScan representaconsiderablerisko finjury tot hemselves,theirsupport teamandt heg eneral communityduetomanifestationof behavioursofconcern. The breadthandofthedepth o f supportrequiredforthese individuals m ightnotin assessableusingt h e IA method.

Recommendations

It can beseenfrom t heabove, thatPWSAhasmany concernsabout changes toIndependentAssessments, andhow‘reasonableandnecessary’wouldbedetermined. PWSat hereforecannot suppor tthep ol icy in itscurrentform . Therefore , wehavenot been abletoaddressthe questions inthe Consultation Paper, becauseitwas implicitinthosethatthewouldfindthenewprocessacceptable. That wasaflawed assumption. InsteadPWSPuts forwardfollowingrecommendations:

o The NDIA mustrecognize th atcomplexchallengingdisabilities, likeP WS willnotbefairlytreated by then ewpolicy; T hen DIAmusttakeintoaccountthatexceptional cohortassessbasedonsupplementaryinformation aboutpeoplewith PWS .

o T he assessmentsfor NDISaccessandreviews forpeoplew ith complex challengingneedsm ust take into accountanyassessment sandreports theperson chooses submit. Eachmustbegiven equalweighting with anygovernment-commissioned I A. Such reportswillcome fromavariety ofprofessionaldisciplines.

o ApplicantsNDISParticipantscan choose whetherornotto useGovernmentI Ap rovider conduct assessment s Alternatively disabled personc anchoose haveto have

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The same tool administered by a practitioner who is known to them, which must then be used for NDIS budget creation and planning.

• The goals of the person with PWS must be taken into account at the budget setting stage, not just later in planning.
• The NDIA must give an assurance that no existing or prospective Participants with PWS will be worse off under any new model.
• There must be no change to the current model until there are answers to the questions above, and disability advocacy organisations can reassure disabled people that there is, in fact, evidence that a new model will deliver better outcomes for all.
• There should be no change to the Act regarding ‘reasonable and necessary’. This should remain with guidelines managed by the NDIA.
• The retention of Lists that identify certain disabilities as having automatic access is more fair, faster and efficient for those disabilities than the IA process, and should be retained as a baseline. This includes PWS, where there is a baseline commonality of dysfunction in the syndrome. PWS should be reinstated onto List A as any person living with PWS can only be expected to survive for a short period of time without support due to the likely rapid onset of morbid obesity and subsequent early death.
• Due to the confabulations of a person with PWS and other domains of cognitive impairment, valid information cannot be supplied by the individual alone. It is important that an IA is never done without the presence of the nominated support person.
• The genetics of this syndrome include a number of health related conditions. These need continued support from the NDIS because if not for their syndrome the health aspects would not exist or be managed differently.
• The results of any IA by a Government provider must be supplied in full, as a draft to the applicant, prior to conclusion and commencement of the planning stage.

PWSA looks forward to a new assessment model being proposed before there are any changes to the Act, or the current processes of access and review. We would be pleased to join a future consultation on this topic.

Yours sincerely,

James O’Brien, Chair