Support for people living with genetic, undiagnosed and rare disease | External submission

GUARD Collaborative Australia Submission to the Joint Standing Committee on the NDIS Inquiry

March 2021

Re: Independent Assessments

To whom it may concern,

Thank for the opportunity to make this submission to the Joint Standing Committee on Disability. I am responding on behalf of the GUARD Collaborative Australia.

About GUARD Collaborative Australia GUARD Collaborative Australia is a coalition of peak body organisations; Genetic Support Network of Victoria, Genetic Alliance Australia (NSW), Syndromes Without A Name (SWAN) Australia and Genetic and Rare Disease Network (WA). We stand together to represent the voice of people living with genetic, undiagnosed and rare disease and those who support them. We strive for a fair, equitable and collaborative approach to disability, health and wellbeing for all our population members.

Our submission is in the context of the National Strategic Action Plan for Rare Disease, a focussed plan outlining the priorities and areas of action required to improve the lives of people living with rare disease.

We have addressed the Terms of Reference on the following pages along with our key issues and recommendations.

I would be happy to provide further information about our submission if required.

Kind regards

Monica Ferrie Chief Executive Officer, Genetic Support Network of Victoria On behalf of the GUARD Collaborative Australia

About Genetic, Undiagnosed and Rare Diseases

According to the Australian Government - Department of Health, it is estimated 8% of Australians are living with a rare disease, of which 80% have a genetic origin. It is estimated by geneticists that at least 80% of rare diseases have a disability component that impacts them.

There are over 6000 rare diseases, 75% of them affecting children. Many rare diseases are life- threatening or have a chronic illness associated with them. Unfortunately, 30% of affected children will not see their fifth birthday.1 Obtaining a diagnosis and/or treatment can be a long and difficult journey. About half of children with learning disabilities and approximately 60% of children with multiple congenital problems do not have a definitive diagnosis to explain the cause of their condition. 2

We live in the rapid genomics era where we are discovering new rare diseases every week. Some of these gene changes are complex and we are only just learning about the relationship between some genes and the environment. Discovery can bring hope and possibility, understanding and knowledge, fear and despair. Lack of diagnosis can bring frustration and isolation and limited access to medical, disability, social and, mainstream and community supports.

People living with a genetic, undiagnosed or rare disease are amongst the most vulnerable groups in society. Their diseases are highly complex, often chronic, and severely disabling conditions, which generate specific care needs. They are difficult to understand by clinicians and researchers, let alone by the layperson.

For our vulnerable rare disease population, who also present with disability, it is imperative that additional measures such as the NDIS can support them in either maintaining or improving their functional capacity in a fair, equitable and timely manner.

1 https://www.mcri.edu.au/content/rare-disease 2 https://www.undiagnosed.org.uk/support_information/what-does-swan-or-being-undiagnosed-mean/

Executive Summary GUARD Collaborative Australia is extremely concerned of the potential impact of independent assessments and the process being undertaken to introduce them. There has been no evidence presented to suggest that independent assessment will positively impact the lives of people living with disability and no evidence to suggest that they will lead to systemic improvements. It is highly concerning to be consulted about something when all indications are that decisions have been made already and will be further implemented regardless of the outcome of consultation.

We are disappointed that the NDIS plans to introduce independent assessments without the pilot program fully completed and with very little consultation with people with disability, the family and carers and the disability sector that supports them. Any changes to the NDIS need to involve codesign and consultation with the disability community. Together we can make practical improvements to the NDIS to make the scheme more equitable for everyone. There is much talking the talk but little evidence of walking the talk.

Implementation considerations that have yet to be sufficiently addressed include how or even if the NDIS will consider assessments and reports from specialists, therapists and service providers that identify a participant’s functional capacity as well as their goals and support needs. These support providers have established trust with families, carers and individuals and long standing relationships with their clients. They are also experts in their field, it is unthinkable that their reports will not carry considerable weight and be valued as significant insight into a participant’s functional capacity and support needs.

Genetic, undiagnosed and rare conditions often have episodic and/or fluctuating disabilities along with health concerns. Progressive and degenerative conditions are not uncommon among our community and daily function can decline very rapidly. Symptoms may be inconsistent, lacking or masked at the time of the independent assessment but that does not mean they do not exist and have substantial impact on functionality at times of the day, times of the month, under stress, a decline in physical health or when other other variables are at play. Genetic, undiagnosed and rare disease is not always predictable and on a difficult day, children and adults can require an intensive level of support by either a family member or someone who knows them well such as a highly skilled, trusted, and trained support worker or therapist just to achieve a minimum level of functionality.

The proposed model of independent assessment could mean that if an adult or child with a genetic, undiagnosed or rare condition was assessed on a “good” day, they might receive a very different score on their assessment than on a day where the condition impacted their disability more. We simply cannot have a one size fits all approach to the NDIS. This creates enormous inequity in a system that was supposed to remove it.

There is no doubt that the NDIS system can be improved. Money would be better spent in other areas of the NDIS such as on the participants supports (many of our community living with disability have inadequate plans), or on staff training as many ECEI Coordinators, LAC and Planners have little understanding of what is like to be a NDIS participant with a genetic, undiagnosed or rare condition that will require lifelong interventions. This is evidenced by questions consistently asked such as – When will your condition improve? or At what age will your child grow out of it?

The intention of the NDIS was to put the participant first and make the conversation about them. Why is this intent being abandoned?

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Summary of Key Issues and Recommendations

KEY ISSUES	RECOMMENDATIONS
Mandatory use of independent assessments	• Independent assessments, if introduced, should not be mandatory and should only be used in a voluntary capacity by participants to access the NDIS if they are requested and only when there is not enough supporting evidence to enter the scheme..

If legislation passes that independent assessments will become mandatory to access the NDIS, it is imperative the data derived from them should not be used alone when making access decisions to enter the scheme.
If legislation passes that independent assessments will become mandatory to complete at plan reviews, the NDIA must take into consideration assessments and reports by health professionals already working with participants and allow additional funding in participants plans to pay for them.
There must be a clear pathway of appeal that is easily accessed and supports participants through the process. Appeal costs must be funded by the NDIS separate to the participant’s plan. | | Legislation | • The Federal government delay drafting legislation to introduce NDIS mandatory independent assessment until the evidence and recommendations from the second pilot study have been evaluated and consultation and codesign has occurred with participants, family and carers and the disability sector that supports them. | | Consultation with the Disability Community | • Genuine consultation and codesign has to happen between the NDIA, government, participants, family and carers and the disability sector that supports them before making any new radical changes to the NDIS.
No pilot program to be introduced to the NDIS without first having consultation and codesign between the NDIA, government, participants, family and carers and the disability sector that supports them. | | NDIA Making Presumptions | • The NDIA must provide clarity and accuracy in its information. It should not presume that independent assessments will become part of the NDIS when the legislation to amend the NDIA Act 2013 is yet to be passed by parliament. The NDIA needs to stop providing misleading information to participants. | | Independent Assessors | • The NDIA does not subcontract the task of conducting independent assessments outside of the NDIA.
The NDIA ensures independent assessors have minimum of three years training both in conducting functionality assessments and within their healthcare profession.
There must not be quotas around the number of independent assessments to be completed as a measure of performance for assessors. |

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GUARD Collaborative Australia — Joint Standing Committee - Independent Assessments - submission.

KEY ISSUES	RECOMMENDATIONS
Diminishing Expert Workforces	• The NDIA recognises the diminishing expert workforces leading to limited number of allied health professionals, psychologists, counsellors and social workers, particularly in regional, rural and remote areas as a key barrier to introduction of independent assessments and national equity.
Independent Assessments Tools	• Any introduction of assessment tools and times for independent assessments must take into account family differences and flexibility.
Independent Assessments	• Independent assessments cannot be rushed, every participant deserves the right to complete their independent assessments at their own pace and over multiple days (if required). The participant should be able to decide how many times they wish to attempt the independent assessment.

The NDIA ensure participants have access to the technology they need to complete their independent assessments.
The NDIA does not use independent assessments that involve parents being separated from their children or guardians being separated from reduced capacity adults.
The NDIA should use assessments in Easy English that participants with intellectual disability and cognitive impairment can easily understand.
The NDIA needs to ensure independent assessments do not include terminology that participants may not have been exposed to before.
Participants must be offered the choice between receiving a summary or a full copy of the report from their assessment. | | Plan Budgets | • Budgets must be established on the basis of more than an independent assessment. They must consider support needs and participant goals identified by the participant as well as reports from specialists and therapists (when provided). | | Planning Meetings | • All communication, including independent assessments, with participants must be conducted using the participants usual method of communication (such as Key Word Sign).
Planning meetings must focus on the participants goals and aspirations and utilise assessments and reports provided by specialist, allied health reports and service providers who have a good understanding of a participants needs prior to a planner creating a draft plan. |

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GUARD Collaborative Australia — Joint Standing Committee - Independent Assessments - submission.

KEY ISSUES	RECOMMENDATIONS
Transparency and Communication	• The NDIA needs to define what constitutes a “significant change” in a person’s capacity or circumstances.

The NDIA needs to define what constitutes “significant risk and behaviours”. Definitions need to be added to the NDIS website and documents.
The NDIA needs to state what happens if a participant is non-compliant or unable to complete an independent assessment. This needs to be available on the NDIS website and in NDIS documents.
The NDIA has to be transparent about what the grievance process is for NDIS applicants or participants who are dissatisfied with an independent assessment, their assessor, or the assessor’s organisation. This needs to be available on the NDIS website and in NDIS documents. Co-design of this process is recommended.
When taking into consideration what constitutes a behaviour of concern, the NDIS has to recognise that either a participant, their family, specialist or therapists is best placed to identify these. If behaviours of concern have the potential to arise or do arise, the independent assessment will need to be aborted immediately with no penalty for the participant.
The NDIA keeps consistent and accurate information on the NDIA website.
The NDIA to be transparent about the full cost of independent assessments when they are used for participants to enter the scheme. | | Participants Needs | • The NDIA has to ensure that the independent quality framework is completed in consultation with participants, family and carers and the disability sector that supports them so it reflects participants needs.
That the NDIA does not have a one size fits all approach to independent assessments when determining a participant’s functional capacity, particularly when assessing a participant with a genetic, undiagnosed or rare condition. | | Better use of Funding | • Funds could be better spent on improving the current NDIS system rather than introducing mandatory independent assessments. These would include providing participants with the supports they need to achieve their NDIS goals and more training for staff, so they have a better understanding of disability (including genetic, undiagnosed and rare conditions). |

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GUARD Collaborative Australia — Joint Standing Committee - Independent Assessments - submission.

KEY ISSUES	RECOMMENDATIONS
Review Process	• The NDIA needs to be more transparent about the review process (or lack of it) for independent assessments if participants are not happy with their assessment. This needs to be available on the NDIS website and in NDIS documents.

Should participants be dissatisfied with their assessment, and the review process is activated, the process must be transparent to participants, parents and guardians.
The NDIA needs to allow independent assessment results to be accessible for review easily if participants do not believe them to be a true representation of their functional capacity.
Participants should be able to review the decision of plan budgets attached to plans.
The NDIA has to be transparent about what the grievance process is and progress communicated for NDIS applicants or participants who are dissatisfied with an independent assessment, their assessor, or the assessor’s organisation.
Participants should be able to request a second and timely assessment regardless of whether it is inconsistent with the independent assessment framework, and if there has been a significant change to their functional capacity or circumstances.
The AAT should have the power to review independent assessments. |

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GUARD Collaborative Australia — Joint Standing Committee - Independent Assessments - submission.

TERMS OF REFERENCE

A - The development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS

THE ISS/UES

Lack of understanding of a participant’s needs

It is clear that the people who best understand the needs of a participant are the participant, the participant’s family and carers, and those who have been involved in their care for many years. To assume that complex and chronic conditions and their impact on functionality can be assessed independently lacks credibility. Reports and assessments written by clinicians, allied health professionals and support organisations provide critical insights into the impact and potential trajectory of genetic, undiagnosed and rare conditions. Creating a more streamlined and consistent process for these reports to be provided, shifting the burden from parents to access them, training staff so that they understand them and ensuring that they have the time to read them would be of greater benefit than an assessment made by someone who meets the participant once (in a potentially less than ideal and more stressful environment).

Lack of evidence to support independent assessments

There is no evidence that the tool kit of assessment tools decided on are the most suitable assessments for a social model of disability supports. We do not feel the small number (513)3 of NDIS participants who participated in the first Independent Assessment was a broad enough sample to confirm the selected assessments were the right tools to use. The first pilot also only included 71% of participants had a high level of function who had either Autism Spectrum Disorder, intellectual disability or psychosocial disability. This is not representative of the community requiring the NDIS thereby reducing the effectiveness of the pilot, nor is this sample representative of the genetic, undiagnosed and rare condition community.

The second pilot study aims to draw on the experience of 4000 pilot participants and is yet to be concluded. There are mixed messages regarding this pilot and incentives to participate and also significant stress reported about lack of flexibility and anxiety.

Independent assessments must not be introduced without the supporting evidence to demonstrate that independent assessments proposed are the most appropriate to be used to support a social model of disability.

In August 2020, the government’s response to the Tune Review Recommendation 7: States that: b) provide discretionary powers for the NDIA to require a prospective participant to undergo an assessment for the purposes of decision-making under the NDIS Act, using NDIA-approved providers in a form set by the NDIA.

The Tune Review recommends the Act is amended so they NDIA can apply discretionary powers regarding prospective participants to complete an independent assessment. This is very different to what the NDIA is proposing with the NDIA wanting to introduce mandatory independent assessments for access to the NDIS and at every review meeting.

3 https://www.ndis.gov.au/participants/independent-assessments/independent-assessment-pilot

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Lack of consultation with people with disability, their families and the sector

The lack of consultation with people with disability, their families and the disability sector that supports them is of great concern especially when such dramatic change is proposed. It was understood that the process for implementing independent assessments would be determined based on the experience of the recent trials and any implementation would occur in consultation with people with disability, their families and the disability sector. This has not been the case.

It is confusing and curious that the NDIA appears to be assuming the legislation will be passed introducing independent assessments without waiting for the results of the second pilot project.

Codesign with people who have a disability, their families and the disability sector that supports them should underpin any proposed change and implementation.

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 Legislation is yet to be passed
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The draft legislation around independent assessments is yet to go before parliament so we recommend that the NDIA stop acting as if the amendments to the NDIS Act 2013 have already been passed. They haven’t.

B - The impact of similar policies in other jurisdictions and in the provision of other government services

GUARD Collaborative Australia does not wish to comment on this question.

C - The human and financial resources needed to effectively implement independent assessments

THE ISSUES

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Assessment tools
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GUARD Collaborative Australia is seeking assurance that the utilisation of independent assessments at every plan review will not result in increasing human and financial resources burden on the scheme and therefore the participants.

High staff turnover

It is possible that assessors may experience a high level of emotional burnout and fatigue as they hear about what it is like to live with a disability. This is evidenced by our community reporting high turnover with LACs and planners. High staff turnover among assessors will also increase financial burden on the NDIS system as recruitment and training will be required. This will also result in delays in actioning supports for participants.

Diminishing Expert Workforce and Time Delays

Our community frequently report 6 -12 month waiting lists to see an allied health professional, psychologists, counsellors and social workers. We are also aware that a number of services have even closed their waiting lists. We know allied health professional are diminishing in availability and demand is increasing . This is particularly true in regional, rural and remote areas where there are already delays and service gaps due to limited local services and long waiting lists.

For many assessments a diagnosis is requested. For a genetic consultation, a delay of 12 months is not uncommon in most states. This time is increased as genetic testing processes may take months to complete and report. When results are available, a full diagnosis may not be available as genomic

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information is based on an emerging technology. Therefore genetic testing may result in an undiagnosed condition, despite and obvious need to intervention and supports.

We are extremely concerned that the mandatory introduction of independent assessments will increase the burden on the existing experts and decrease services to participants.

Expertise in conducting assessments will be critical should they be implemented, currently there is no information about what will occur if there are not enough independent assessors. Already we have a number of LAC’s and planners who have had little training or lived experience with disability. The lack of lived experience and training in disability among LAC’s and Planners already causes issues for our families trying to obtain funding to meet their NDIS goals.

The length of time for assessment

The recommended time to conduct an assessment is 20 minutes to 3 hours. For families who require the longer time frame, this may be very difficult on many levels. The NDIA have not been clear about how many times the one assessment can be attempted or how many times the assessor is willing or able to return to complete the assessment. Can assessment be conducted over a number of days, and what will the cost implications of this be? This is unclear at this stage. We are also concerned that ‘targets’ are in place for LAC’s and planners and will this translate to independent assessment and impact quality and dedicated time.

The NDIS website states “Your assessment will be free. The assessment will take around three hours. You can choose to do the assessment in the way that best suits you, like on the same day, or over a number of days”4 This does not actually appear to be the case with reports by those who have been asked to participate in the pilot study indicating they have only been offered two options, one x 3- hour timeslots or two separate time slots. Due to their medical condition and disability, many of our community will not be able to focus for long before they fatigue. There is no definitive maximum number of times set out by the NDIS, which state the number of times you can meet with your assessor to complete the assessment tasks. This inconsistent messaging is unfortunately consistent.

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Supervision of participants
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The Vineland test is required to be completed when the participant is in a different room. Does that mean that the assessor will bring a support person with them to care for the child whilst their parent completes the assessment tasks? We are concerned with the implication that children or reduced capacity adults can be left unattended without supervision. Who will pay for the medically trained carer to supervise children whilst their parent completes the assessment task? Many children or reduced capacity adults will experience anxiety and are not comfortable with talking to or being observed by or even cared for by strangers. It is unclear if the NDIA will provide additional funding for a participant’s regular carer (if they have one funded) to be present on the day.

Many children only receive capacity building supports in their plan and not core funding as the NDIA argue looking after your child is a ‘parent’s responsibility’. This also applies to adults with an intellectual disability.

D - The independence, qualifications, training, expertise and quality assurance of assessors

THE ISSUES

Misinformation

4 https://www.ndis.gov.au/participants/independent-assessments/independent-assessment-process 10 | P a g e GUARD Collaborative Australia – Joint Standing Committee - Independent Assessments - submission.

The previous information on the NDIA website stated that an assessor would be from but not limited to one of the following health care professions:

occupational therapists
physiotherapists
speech pathologists
clinical and registered psychologists
rehabilitation counsellors
socialworkers

The information has recently been changed to state “will be health care professionals from a range of areas including:

occupational therapists
physiotherapists
speech pathologists
clinical and registered psychologists
rehabilitation counsellors
socialworkers

The fact that information can be changed from one day to the next is concerning and provokes a lack for trust with regards to how independent assessments will evolve over time. Previous information also stated that you could choose from the assessor list what medical discipline your independent assessor would be from. Now it seems you can only choose from the following.

where and when your assessment happens
if your assessor is male or female
if you’d like your assessment done in one session, or over a number of days (which may not even be available)

Lack of training

We are concerned that to become an assessor in you are only required to have “a minimum of 12 months experience full time clinical experience (post registration) working in their field…”5 The lack of minimal training required to administer these assessments is concerning as many assessors will have very limited experience of liaising with participants with genetic,undiagnosed and rare conditions. It is highly unlikely that in 12 months potential assessors will have been exposed to a number of rare genetic conditions to develop the skills and gain the expertise needed to be able to support our community.

Lack of understanding and awareness of undiagnosed and rare genetic conditions

We have been concerned for some time with the lack of understanding that LAC’s and planners have about genetic, undiagnosed and rare conditions. It is disturbing to think that independent assessors will have even less understanding of what it is like for our families. Genetic, undiagnosed and rare conditions can be episodic, or present with fluctuating disabilities, they can be progressive and often co-existing with a number of other chronic health conditions. For children and adults, functional capacity can change very rapidly, minute to minute, hour to hour, day to day or week to week. If an independent assessor performs assessments when a person is having a “good day”, it may not be a true indication of their functional capacity over week.

Outsourcing expertise has not previously worked

The NDIS needs to learn from its mistakes in outsourcing planning meetings to LAC’s. It has just led to a large number for reviews, causing high anxiety and frustration for participants. When the NDIS was in development it was envisaged that if you had a child who was in primary school, you would meet with a planner experienced with working with primary school age children with disability,

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however sadly this has not been the case. We know by the lack of training among Planners, LAC’s and ECEI coordinators that there is a distinct lack of understanding of participants needs and disabilities.

Quality of independent assessments

We are concerned that that there is the potential to put time limits on independent assessors to complete assessments, some assessments will be rushed and not be a true representation of participants functional capacity. The social cost of families who do not receive support should be unacceptable to the NDIS mission.

E - The appropriateness of the assessment tools selected for use in independent assessments to determine plan funding

THE ISSUES

Lack of evidence

The NDIA is yet to share evidence that supports that independent assessments are proven tools for determining functional capacity, support needs and plan budgets, or even how these assessments would be translated into budgets. We don’t understand how the NDIA wants to introduce this radical reform without evidence and evaluation that this approach will be the one best suited to supporting NDIS participants.

There is a lack of evidence which supports that the assessment tools selected for independent assessments should be those used to align with plan budgets in a social model of disability. The use of individual assessments to ascertain plan budgets, very much moves away from an individualised approach to NDIS planning which is participant led, goal orientated and puts the participant at the centre of the planning conversation.

The NDIS was established to deliver person-centred supports underpinned by a human rights approach. It was proclaimed to be a social model of support which focused on supporting people with disability, their families and carers so they could participate in social, economic and community life. More importantly it was about “choice and control”. Independent assessments, linked to funds that create a plan around those funds would seem to go against the establishment principles of the NDIS.

The proposed model of mandatory independent assessments will just highlight the growing inequities within the NDIS. It will add more complexities, anxiety and stress to people with disability trying to get the supports they need to live an “ordinary life”. It will not improve access to the scheme but instead be another obstacle for people, particularly those with an intellectual disability to navigate.

Causing anxiety amongst participants

Many of our community, particularly parents, have reported they are fearful and anxious about the proposed mandatory use of independent assessments. Meeting with a stranger who does not know a child’s or person under guardianship strengths and weaknesses is of huge concern for our community. Our families have enough anxiety living with the unknown. A one size fits all approach will not work for the community we represent, particularly with our cohort of families where progressive and episodic symptoms can often occur.

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We have to put the participant first and conversations between planners and participants need to take place prior to any independent assessments. Planners need to gain a better understand of participants goals and aspirations and what supports are required to achieve them. Working backwards and creating a plan and writing goals around a budget, without talking to a participant first to find out how they want to be supported, simply will not work and will lead to an increased number of plan reviews.

Evidence from specialists reports and assessments ignored

There NDIA has not made it clear if planners are able to add to plan budgets which are derived from assessments. We don’t know whether other factors such as specialist reports and assessments can be used to form plan budgets. It appears that plan budgets will be derived from independent assessments alone and this is causing great angst in the disability community. Reports and assessments provided by people who support participants such as therapists should not be ignored. They are experts in their field and have often built-up trust with a participant and their family over time and have an in depth understanding of a participant’s support needs.

Inaccurate or inconclusive assessments

It takes time to understand a person’s functional capacity, especially where a person has a chronic and complex condition underpinning the loss of funtionality. We do not believe you can get an accurate and true representation of a person’s functional capacity when it is assessed within three hours using inappropriate tools by assessments performed by total strangers. This must lead to inaccurate or inconclusive assessments and there is no clear process for what will occur in these cases. Further, a significant social cost to families will result from porrly done assessments.

Lead to a high number of reviews

We are concerned that independent assessments will be linked to plan budgets with limited (if any) capacity for planners to add to a participant’s budget. In the absence of any clear information, it is surmised that planners will need to create a draft plan based around a draft budget (which can only be reviewed in very limited circumstances)

Assessments tools suggested are not appropriate for all families

The selected independent assessments tools focus more on physical disability rather than mental, behavioural or cognitive disability. Many families living with genetic, undiagnosed and rare conditions have neuro diverse disability and chronic illness so the selected assessment tools might not be the most suitable to support their needs nor for determining access and eligibility to the scheme.

F - The implications of independent assessments for access to and eligibility for the NDIS

THE ISSUES

Lack of understanding of undiagnosed and rare genetic conditions

GUARD Collaborative Australia does not support the mandatory introduction of independent assessments to become a participant of the NDIS. We estimate around 3% of our undiagnosed community are rejected from accessing the NDIS the first time they apply. This is despite one or more impairments; intellectual, cognitive, neurological, sensory or physical impairments that are likely to be lifelong.

The lack of awareness and training of the NDIS access team has caused problems for some of our genetic, undiagnosed and rare condition families. Medical reports for our community are too complex and have not been understood by NDIS access staff.

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Undiagnosed and rare genetic conditions can be episodic, fluctuating, spasmodic and progressive. Our fear is that if independent assessments alone are used as a benchmark to access the scheme, it will be even more difficult for people with genetic, undiagnosed and rare conditions to become NDIS participants. Specialist reports and assessment must be used as evidence within the system.

The NDIS consultaton paper: Access and Eligible Policy with Independent Assessment 23.11 states “disagreeing with the results of an otherwise sound and robust independent assessment is not sufficient for the NDIA to fund another assessment. Applicants can only seek a second assessment where the assessment was not consistent with the independent assessment framework, or if the applicant has had a significant change to their functional capacity or cirucmstances” We still don’t know what constitutes a ‘significant change’.

People struggle to even learn about the NDIS and how to access the scheme. Under the proposed changes, once you have submitted reports and applied to access the scheme, the NDIS will then arrange an independent assessment to confirm you meet the scheme’s criteria. We understand that participants who cannot afford to pay for reports upfront may be disadvantaged. However, it appears that if you can supply reports and assessments as evidence that you meet the disability criteria you have an advantage in accessing the scheme. To conduct an independent assessment to assess a person’s functional capacity after they have applied for the scheme prior to accepting them, is just another step for people to navigate in an already confusing process. This will impact families timewise as they retell their story and emotionally as they relive the experience of the discovery of their child’s condition.

Additional stress and anxiety

Just in the last month, Support organisations have experienced as much as 20% increase in emails and phone calls from members extremely concerned about independent assessments and we are concerned they will lead to further anxiety and trauma.

Our community already experiences much anxiety in their lives. Our families have told us they do not want to share their own or their childs personal information with strangers who have no understanding of what life is like for them. Rejection to the scheme based on an independent assessment which aims to capture functional capacity in just three hours is offensive when rare genetic conditions are a lot more complex than what anyone can learn in three hours.

The added complexity of assessment occurring on what might look like a “good day” won’t capture what everyday life is usually like. Many of our community do not cope well when they feel ‘out of their depth’ in unfamiliar settings or with unfamiliar people resulting in withdrawal or retreat which is not indicative of their lives in familiar settings such as the family home.

No reduction in costs

We do not believe that the introduction of independent assessments will achieve the objective of reducing expenditure to access the NDIS. Participants still need to gather reports and assessments as evidence that they have a disability that meet the NDIS Act 2013 requirements to enter the scheme. Then if the NDIS deem them eligible for the scheme they will need to undergo an independent assessment to ensure their functional capacity is low enough to access the scheme. There is still an access barrier for people who cannot afford these reports and assessments prior to entering the scheme. We still do not know the full cost of utilising independent assessments to know whether it is a good alternative to the current model. There is no evidence that this one size fits all model will work.

G - The implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports

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THE ISSUES

Independent assessments attached to plan budgets

It remains unclear how budgets are established, we surmise that planners are drafting participant plans based on draft budgets which are aligned to assessments. After the assessment the planner will meet with the participant and discuss the draft plan and budget. Many participants are not familiar with the pricing guide and the cost of NDIS funded supports so this will be challenging. The pricing guide is generally updated twice per year and there is no reference as to how this will be reflected in a participants’ budget. A draft budget can only be changed under specific circumstances and participants cannot ask for a review of a draft budget.

It is difficult to imagine how a planner can draft a plan prior to having a conversation about what the participant’s goals are and what supports they need to support them in their daily life. It seems that there will be less value placed on goals and participants will have less choice and control about what supports they would like funded in their plan. This does not align with the objectives and principles of the NDIS Act 2013.

The NDIS is a not a one size fits all model and this is especially the case with genetic, undiagnosed and rare conditions. The proposed process is not participant focused and moves away from a personalised individualised approach which was fundamental to the establishment of the NDIS.

There is every chance that participants will not be happy with their plans if they don’t adequately reflect their support needs or goals. This will lead to an increase in the number of reviews which come at a high emotional cost to participants and their families causing grief, high levels of frustration and anxiety. This will also add additional costs back into the system.

May not be a true reflection of a person’s functional capacity

We are concerned that an independent assessment will not be a true indication of a person’s functional capacity. The questions lend themselves to being “black or white” answers. The assessments do not take into consideration the environment a participant might be in when completing the task e.g., they may be able to complete the task at home but not in the busy school environment. Even at the start of the PEDI-CAT, the assessor has to mark a box with regards to walking devices and the options are: walker, crutches, cane or, does not use walker, crutches or cane. There is no room to select “sometimes” or explain the circumstances.

There is a question for the assessor to complete “Has the person been diagnosed with ASD?” – there is no room to say – “awaiting diagnosis” or “traits of ASD” Many of children have autistic traits as part of their genetic condition but they won’t be able to do the PEDI-CAT ASD.

H - The circumstances in which a person may not be required to complete an independent assessment

THE ISSUES

Behaviours of concern

If a participant is likely to be non-compliant, they should be excused from undertaking an independent assessment. Many potential participants are unpredictable with their behaviour, sometimes triggered by their rare genetic condition. Feeling safe is an issue, particularly for children and reduced capacity adults and they may demonstrate behaviours of self-harm and/or harm to others. They may display signs of impaired mental health, including anxious behaviours or emotional outbursts. These may be triggered or exasperated by the assessment process. When safety is a concern for the participant or their family or a participant is in a heightened state, the participant or their representative should be

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in a position to request that the assessment be aborted immediately or not attempted at all. This should not have a negative impact on the amount of funding they receive in their plan for supports.

Behaviours of concern such as aggressive, sexually aggressive, self-harm and those in a heightened state of anxiety should be determined and identified by either the family or a professional such as a psychologist who knows the participant well.

Significant risk and behaviour

Delegation of a decision that an applicant does not need to complete an independent assessment where there is a risk to safety or an assessment is deemed inaccessible or invalid is unclear. We would strongly suggest that a participant’s family or support person would have a greater knowledge of what triggers aggressive and dangerous behaviour and understand a participant’s emotional vulnerability and what constitutes as trauma for them, compared to someone they have never met. Severe behaviours of concern may be subjective – emotional trauma can arise after the event.

The number of times an assessment can be completed

If a participant is unable to complete an assessment, it should not prevent them from getting the reasonable and necessary supports in their NDIS plan so they can meet or work towards their NDIS goals. The number of attempts at independent assessment cannot be prescribed.

I - Opportunities to review or challenge the outcomes of independent assessments

THE ISSUES

Review process

There must be an avenue to request a review if you disagree with the independent assessment, which could impact eligibility or determine a plan budget. Independent assessment results should be able to be reviewed at the request of the participant. The assigned budget aligned to a plan as a direct result of an independent assessment may not be enough to support a participant’s needs.

The NDIA references being able to seek a second assessment where the assessment was not consistent with the independent assessment framework, or if the applicant has had a ‘significant change’ to their functional capacity or circumstances. It is unclear in the independent assessment framework as to what constitutes as ‘significant change’ in a person’s capacity or circumstances. Application must be consistent and not subjective.

The grievance process for NDIS applicants or participants if dissatisfied with an independent assessment, their assessor, or the assessor’s organisation is unclear. The process must be accessible and participants must have clarity around; What the complaints process looks like? Will this form part of the quality assurance framework for the delivery of independent assessments? What process do they need to follow? How long does it take? What happens to them while their complaint is being addressed?

Any decision not to grant an exception for an independent assessment must be reviewable and anything less is unacceptable.

We are concerned it will become harder to appeal a planning decision because support budgets are linked to independent assessment which cannot be appealed at the Administrative Appeals Tribunal. If participants do not have the funding in their plan to purchase the supports they need to meet their goals and aspirations, it will be very difficult to gain further funding without another independent assessment which are only allowed under special circumstances.

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Independent assessments results should be easier to appeal against. Participants need to be able to either request another independent assessment under less ridged appeal criteria or be able to request a review of the budget figure attached to their independent assessments if it is preventing them from getting the supports in their plan they need to be able to achieve the goals in their plan and aspirations.

Even the language used on the NDIA website is confusing for people around reviewing an independent assessment. For example, there is a question under the assessment process on the NDIA website that asks “What if I disagree with my assessment?” but then it goes onto say “if you don’t agree with the decision we make based on your independent assessment, you can ask for a review of the decision”. Yes, you can ask for a review of your plan BUT it is virtually impossible to ask for a review of your independent assessment! The question is misleading as participants might presume they can easily ask for a review of their independent assessment which is simply not the case.

J - The appropriateness of independent assessments for particular conhorts of people with disability, including Aboriginal and Torres Straight Islander peoples; people from regional, rural and remote communities, and people from culturally and linguistaically diverse backgrounds.

THE ISSUES

Independent assessments not in Easy English

We are concerned that participants from culturally and linguistic diverse backgrounds and people with intellectual disability and cognitive impairment may not understand the questions they are being asked in the independent assessments. There is no reference to any of the assessments or draft plans or even final participant’s plans being presented in Easy English so participants can understand them. The assessments contain some “Americanisms” that may not be familiar to people from linguistic diverse backgrounds.

Regional and Remote Areas

Some of the questions in the assessments relate to things like: Shopping carts, traffic lights and swimming pools which a child may never have been exposed to. This test may be alientating for people living in these areas as there will be a number of questions that will be irrelevant and may make parents feel insecure and inadequate.

Access to Technology

Any move to independent assessments must be equitable. Not everyone has good internet connectivity and an adequately sized screen so for some families an assessment via video link will not be an option.

Video links may appear a good option as not every participant will want a stranger going into their home and not every participant wants to leave their house to visit a stranger. However participants from linguistically diverse backgrounds or lower socio economics backgrounds are more likely to be disadvantaged and unable to have this option.

Environment

According to the pilot program, independent assessments undertaken at home need to be completed in a quiet comfortable space with good lighting and with minimal distractions. We know

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this is not always possible, and the accommodations that will be made for families are unclear. This again places unnecessary burden on families.

K – the appropriateness of independent assessments for people with particular disability types, including psychosocial disability

THE ISSUES

Not appropriate for children with undiagnosed and rare genetic conditions

GUARD Collaborative Australia is very concerned that the mandatory introduction of independent assessments will not work for our community, particularly as plan budgets will be aligned with independent assessment results.

Genetic, undiagnosed and rare conditions are often episodic and/or have fluctuating disabilities along with chronic health concerns. Progressive and degenerative conditions are not uncommon among our members and daily function can decline very rapidly. Symptoms may be lacking or masked at the time of the independent assessments but that does not mean they do not exist. On a difficult day, participants may require an intensive level of support by either a family member or someone who knows the child well such as a highly skilled, trusted and trained support worker or therapist.

It is curious how an independent assessment can identify functional capacity when it can fluctuate so much, and so much may be unknown about their genetic or rare condition. This is already a problem for our community. Even clinicians often do not know the implications of many rare genetic conditions because they may have only been discovered in the last few years and are, as the name suggests ‘rare’.

We are concerned about the Vineland assessment which asks for someone who knows the participant well, such as a parent, to complete the test away from their child. How can assessors ask for parents to remove their children from the room whilst they complete the test? Many children have separation anxiety and will not want to be away from their parents. It is a safety concern for many parents adding to the worries, anxiety and frustration. Questions such as ‘Who will fund a carer to look after the child whilst the parent completes the test?’ must be answered.

L - Any other related matters

THE ISSUES

Misleading information

We have concerns that the legislation is yet to be drafted around the mandatory use of independent assessments yet and the NDIS communications presumes that independent assessments will become mandatory in most cases. This has been evident through information around independent assessments for those who have participated in the participant portal review consultations and even by the way the NDIA wrote their own consultation paper requesting submissions on independent assessments.

Premature exit of the scheme

We are very concerned that by introducing mandatory independent assessments a number of participants will be forced to exit the scheme prematurely and without the appropriate transition in place to assist them with accessing community supports. We fear they may experience a decrease in their functional capacity without enough supports in place. This again moves away from a foundation principle where people with a permanent disability became participant for life.

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Full independent assessment report

If mandatory independent assessments are introduced, participants should be able to receive a full copy of their assessment results and not just a summary of them.

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