South West Autism Network (Inc)

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• South West Autism Network ·

Submission to the Joint Standing Committee Inquiry into NDIS

Acknowledgements

SWAN acknowledges the traditional owners of the land on which this submission was produced, the Wardandi Noongar people. We acknowledge the deep spiritual connection to this land and extend our respects to community members and Elders past, present and emerging.

Submission preparation

This submission was prepared by South West Autism Network Inc.. In order to write this submission, we listened to the views and concerns of autistic people, their families and advocates, and the wider disability community. We researched current and proposed NDIS processes, the NDIS Act 2013, the Productivity Commission Report 2011, and the Tune Review report 2019.

Introduction - About Us

The South West Autism Network (SWAN) is grateful to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) for making available this opportunity to provide feedback on the National Disability Insurance Agency’s (NDIA) proposal for Independent Assessments.

SWAN is a not-for-profit, charitable organisation supporting autistic individuals and their families living in the south west region of Western Australia for the past 12 years. We are a Disabled Persons and Families Organisation (DPFO) who are currently delivering two Information Linkages and Capacity Building (ILC) projects. All staff, volunteers and Board members either have a disability or are the family member of someone with disability. After campaigning for over a decade to fix the underfunded disability support system, SWAN, along with countless people with disabilities and their families, welcomed the introduction of the NDIS.

With the introduction of the NDIS Act 2013, SWAN was pleased to see a focus on human rights, seeing people with disability as equal partners in decisions that will affect their lives, and providing the right to exercise choice and control. We have supported thousands of people with disability and their families since the introduction of NDIS, to access funding, support services and interventions so that they can live the life they choose. This is the NDIS we fought for. Unfortunately, however, we have also supported hundreds of people with disability and their families who have received insufficient funding, who do not have the resources they need to navigate the NDIS, or, in extremely devastating circumstances for those involved, people with disability not being granted access to NDIS funding.

There are many issues with NDIS which need to be fixed. However, the proposed compulsory Independent Assessments and many other elements in the suite of changes proposed by the NDIA will not address these issues but will increase inequity, reduce fairness, breach human rights and risk the safety of people with disability.

Our Concerns

We are making this submission because we are extremely concerned by the proposed changes, and the devastating impact they will have on people with complex needs, episodic disability, people with psychosocial and developmental disability, and people in regional and remote areas.

The “consultation” process NDIA has undertaken has been and is entirely tokenistic. The Minister for Disability and the NDIA decided the Independent Assessments (IAs) would be made compulsory for all new and existing participants, and sweeping changes to the “planning” process, how funding will allocated and distributed, and even transport funding were all made prior to consulting with any people with disability. Here are some of the changes that we are most concerned about:

• 1) The Independent Assessment Tools are NOT fit for purpose. Additionally, none of the tools are suitable for assessing people with Intellectual Disability, psychosocial disability and autism. There is also no assessment tool chosen for people with upper limb disability, only lower limb disabilities. None of the tools are suitable for assessing the impact of multiple disabilities. People’s circumstances (lack of informal supports, multiple people with disability in the family, ATSI, CaLD, geographic isolation – including lack of services near them etc) are not taken into consideration in this process.

• 2) One of the assessment tools is the Vineland 3. This tool requires someone other than the person with disability to answer questions about their functional impact, without the person with disability present. This has the potential to be extremely dangerous. We know that people with disability are at high risk of violence, abuse and neglect, particularly women. So there will be people with disability having questions about their functional impact answered by their abuser, with no safeguards. This means that the abuser could sabotage the Independent Assessment by presenting the impact of the person’s disability as being significantly less than it actually is – thus reducing their funded supports (and potentially resulting in their being exited from the scheme), and isolating them further from supports, trapping them in the abuse cycle. There are also people with disability whose only supports are funded services with a vested interest, and who should not be answering questions in the Independent Assessments. There are no safeguards around this, as the exemption criteria are secret, and the NDIA has sole decision-making authority on who can be exempt from undergoing Independent Assessments.

• 3) New people requesting access to the NDIS will still be required to obtain expensive diagnostic reports in order to gain access to an Independent Assessment which will determine whether they can gain access to the scheme. It places another hurdle in the path of gaining access to supports, and if the Independent Assessor doesn’t understand your disability and how it impacts you, their report can prevent you gaining access to supports - a decision which isn’t reviewable. The IAs will also be used to assess whether existing participants can remain in the scheme. This already occurs occasionally where an NDIA delegate decides that someone may not meet the disability eligibility criteria anymore, but will now be done to more than 400,000 participants at least once every 5 years. And for children and teens, the NDIA has informed us that they will be forced to undergo IAs much more frequently due to their changing needs, probably every year.

• 4) The Independent Assessors are not and will not be matched by qualification type to disability type. This means it will be luck of the draw as to whether you have an

Independent Assessor with any knowledge of your disability, or suitability to assess you. Physiotherapists are and will continue to assess people with Intellectual Disability, autism and psychosocial disability, despite having no expertise in these disability types. Speech Pathologists and Psychologists are and will continue to assess people with physical disability.

SWAN was provided a copy of the Independent Assessment “reports’ performed by a physiotherapist on an autistic adult participating in the current trial. Concerningly, despite being promised a copy of all reports before agreeing to participate in the trial, the participant had to contact the Independent Assessor organisation multiple times requesting a copy of the reports, then contact NDIA multiple times before finally receiving a copy. Notably, the participant, who spoke out about their negative experience, also did not receive a copy of the trial feedback survey. SWAN are aware of at least four participants in the current Independent Assessment trial who spoke out about their negative experience, and have not been provided the feedback survey. There are likely to be many more, including individuals who decided to cease the assessment part-way due to their negative experience. It is clear that the NDIA is attempting to skew the satisfaction data results from trial participants by only inviting feedback from individuals who completed the entire assessment and did not express negativity about the experience.

The Independent Assessment report documents received by the autistic adult assessed by a physiotherapist are riddled with errors that would likely result in the person assessed being ejected from the NDIS. Here are some excerpts from the person’s Independent Assessment “reports”:

Needs Ct>Kklist: TyPQ of car~ and suppon nHd Len th of time that client can be left alone? Select yes CANS or no Lever Comments • The CANS level must be in line with highest group GROUP A: Requires nursing care and/or supf)Orl or monitotinf} of severe behavioural/cognitive disabilities and/or assistance with very basic (A, B, C, D) endorsed YES in Needs Checklist (left disabilities and/or assistance with very basic ADLs: column) 7 Cannot be left alone - needs support 24 hours per

1. Tracheostomy management No day
2. Nasogastric/PEG feeding Participant does engage in 6 Can be left alone for a few hours - needs support
3. Bed mobility (e.g .. turning) 20-23 hours per day
4. Wanders/gets lost self-harm behaviours 5 Can be left alone for part of the day, but not
5. Exhibits behaviours with potential to harm self/others overnight - needs support 12-19 hours per day
6. Difficulty communicating basic needs associated with autistic 4 Can be left alone for part of the day and
7. Continence overnight- needs support up to 11 hours per day
8. Eating and drinking meltdown [SWAN] Note: there are 3 sub-divisions 4.3, 4.2 and 4.1
9. Transfers/mobility (incl. stairs and indoor surfaces) No that correspond to groups A, B and C respectively
10. Other (specify): No in the Needs Checklist GROUP A Subtotal 0/10 3 Can be left alone for a few days a week - needs support a few days a week GROUP B: Requires assistance, supervision, direction and/or cueng for basic ADLs: 2 Can be left alone for almost all week - needs
11. Personal hygiene/toileting No support at least once a week
12. Bathing/dressing No

Independent Assessments

Su participant nHds on aver:t Heh Wffk (include both :iiid and un .aid su arts}

Planning and making decisions (e g paying blls, planning weekty schedule)	Personal Care (e g. personal hygiene, 1ransfers, wound care. mealtime assistance)	Domestic Tasks (e g meal prep. cleaning, yard maintenance)	Travel/Tr.ansport (only include time spent traven1ng transport)	Community Particlp.rtion (exc )
For most activities	For some actrvities	For most activities	No support required	For about half of activitJes

8. Do you need support for these activities?
9. On .av.rag,. how many hours of support do you Hnd each Wffk tor these
10. On average, how much or your support is provlO.d by t..mlly, trilnds or neighbours each Wffk? | All {100%) | All {100%) 11 . Can your family friends or neighbours continue to provide this support tor the next 12 months?
11. oo you want to continu• to r•c•tv• your famity, tri•nds or n•i hbours? Please outline type of support and reason.

Yes for au or tne ae:trvities Yesfora11 otm

Fig.2: Screenshot of an excerpt of the Independent Assessment conducted by a physiotherapist on an autistic adult, showing some of the errors made. SWAN has inserted typed comments over the participant’s hand-written notes to protect their identity.

Adaptive Behavior Area ### Level Compared to Others Their Age

Communication skills Moderately High Daily Living skills Moderately High Social Skills and Relationships High motor Skills N/A Overall Summary Score Moderately High

Fig.3: Screenshot of an excerpt of the Vineland-3 conducted by a physiotherapist on an autistic adult.

Figure 3 above shows that the physiotherapist conducting the Independent Assessment scored the Vinelands -3 in reverse to how it should have been done. These scores indicate that the autistic participant is functioning significantly higher than most of the non disabled population in Social Skills and Relationships, and higher than average of the nondisabled population in Communication skills and Daily Living skills. These are areas of deficit in people diagnosed with autism. There are numerous other errors in the Independent Assessment Report other than those shown above.

The NDIA plans to roll out the Independent Assessments process as follows: e The Independent Assessor conducts the assessment and writes the report, with a maximum of 3 hours allocated for both the assessment and the report writing. e The Independent Assessor forwards the report direct to the NDIA, unseen by the person with disability and their family. e For new people seeking access to the NDIS, the National Access Team (NAT) will decide whether or not the person is eligible, based on the Independent Assessment report. As the current eligibility lists will cease to exist, people eligible

Independent Assessments

Submission - 221

The text under list A (automatic eligibility based on diagnosis alone) may now be deemed ineligible due to the outcomes of poorly designed, inappropriately conducted and inaccurate Independent Assessments.

‹ For existing participants, the Independent Assessment Report is then fed into the Personal Budget Calculator (PBT) to calculate a funding amount for that participant.

NDIA is adamant that Independent Assessments will not be a Reviewable Decision.

NDIA does state that people will be able to seek a second Independent Assessment if there is evidence that the first one was incorrect; however, people will not be provided with a full copy of the assessment reports in order to contest its accuracy. Additionally, the NDIA will only accept that the Independent Assessment is unsuitable when undisclosed criteria are met.

5. Many of the organisations contracted to deliver the Independent Assessments have already breached their contracts in advertising the positions. We are finding and reporting adverts seeking new Allied Health graduates, whereas the NDIA requires that the Independent Assessors have a minimum 12 months’ full-time clinical experience (which is also completely insufficient). Some are also advertising for physiotherapists, occupational therapists and speech pathologists – excluding psychologists – thus ensuring that no one with psychosocial disability in the areas serviced by those organizations will be appropriately assessed.

6. People will:

‹ Have no choice or control over who does the Independent Assessment (choosing between 2 or 3 organizations to undertake these assessments is not choice and control, especially as people will not be able to choose the actual assessor). ‹ Not be provided with a full copy of the Independent Assessment report. ‹ Not be told the full name of the Independent Assessor, and may not be told their qualification (therefore unable to report them to AHPRA for working outside the scope of their expertise, or inappropriate conduct). ‹ Not be able to have errors in the IA report corrected, ‹ Not be able to have the Independent Assessment decisions reviewed.

SWAN are deeply concerned that the human rights of people with disability, their goals, experience, opinions, and those of the professionals who have worked with people with disability and their families; will be ignored, as this has been our experience thus far during the trial phase. To conduct assessments which result in a secret report that can neither be seen nor appealed, and which may potentially have life-threatening implications for those involved, is highly alarming to say the least.

The new planning process will exclude the most important things – planning and goal setting. People will have an Independent Assessment which will then go to a Personalised Budget Tool (PBT) to calculate how much funding will be allocated to that person. None of the assessment tools are designed for this purpose. There is no information on how the PBT will work because the NDIA has yet to decide this - despite planning to commence using it as soon as there have been 4000 participants in the current Independent Assessments trial. Participants will then have a meeting to explain how to use their funding (it’s yet to be decided if this will be with an LAC or an NDIA Planner). Goals are suddenly irrelevant. So if you’re a young adult living in an aged care facility with a goal to move out of facility and live independently, too bad. Your funding amount has already been decided. Ditto if you need funded supports to move

Independent Assessment

Submission 221

out of the house of an abusive carer. Your goal to do this, the supports you need to do so, and your circumstances will not be considered. Because the funding amount was decided by the PBT based on a poorly constructed and performed Independent Assessment.

By moving away from a NDIS funding model driven by the participant’s goals and linked to the Section 34 Reasonable and Necessary part of the NDIS legislation, this change removes hope for 430,000 participants, applying a deficits-based model and cookie-cutter approach. This change will deliberately eject tens of thousands of people from the scheme, who will then need to turn to state-based systems of support – many of which are now closed or significantly defunded as part of the rollout of the federal NDis (to which the states contribute half of the funding).

8. The NDIA Planner will have the power to increase the funding above the amount calculated by the PBT, or alarmingly, to reduce it. Whilst this is likely to be a reviewable decision, it is unlikely that the reasoning for this decision by the Planner will be disclosed to the participant.

9. The current funding support categories will be changed, and instead of Core, Capital & Capacity Building budgets, there will now be ‘Fixed’ and ‘Flexible’ budgets. Some types of funding will always be in the Fixed budget, and NDIA claim that most funding will be in the Flexible budget. However, the NDIA Planner can decide to put any funding amounts in the Fixed budget, seriously limiting how participants can use the funding to meet their needs. This is particularly concerning in our region, where NDIA Planners are not as knowledgeable as required. All but one are from the old WA state system, and have brought their preconceived notions from that system with them.

10. Funding will be released for claiming in monthly or quarterly instalments (NDIA has yet to decide which), and any unspent funds from that period rollover into the next. Currently the entire amount of approved funding is available for claiming. This means that if a participant loses their informal support, needs to go into Short Term Accommodation (respite), receives an unexpectedly large bill, or their support needs suddenly increase, they can claim the funding flexibly, and continue to have support while negotiating with NDIS to have their plan changed to better meet their needs. Under the new system, if one provider overcharges, another may go unpaid. For people self-managing their funding, if they receive an unexpectedly large invoice, they may not be able to pay their other reasonable and necessary supports – which they then lose access to, and family carers are likely to have to resign from work to provide care. People also would not be able to access Short Term Accommodation (STA) early in their plan if they need it, and would instead have to ‘save up’ to access this support. This defeats the purpose of STA, which must be available when people need it.

11. Transport funding as a periodic payment will cease. For many people, Transport funding replaces Mobility Allowance from Centrelink, which is also paid as a periodic payment. It’s designed to enable participants to reimburse informal supports for transporting them around, as well as pay for Taxis and other forms of transport related to their disability needs. People will be required to provide receipts in order to claim transport costs. For people direct employing support workers, there will be no way to reimburse them for their fuel costs. People self-managing their funding will have to cover these costs from their own pocket, or instruct their support workers to fill up their car and provide a receipt (which would cost NDIS more).

Independent Assessments

Submission #35

sheets/detail/autism-spectrum-disorders

The Autism Early Intervention Consultation paper proposes set funding levels for two age groups, under 7yrs and 7–12yrs (pages 27–31). Disturbingly the consultation paper suggests four levels of funding, with the minimum amount of funding allocated for an entire year being only $4000 for children aged 0–6 yrs, and $2400 for children aged 7–12 yrs.

These amounts are completely insufficient to provide even a bare minimum of reasonable and necessary support. This funding amount is deemed by the NDIA to be suitable for children for whom the Independent Assessment finds one area of high need and one area of medium-low need. Note that from these tiny funding allocations, NDIA will require therapy providers to assess the therapy needs of the child, provide therapy, and write report(s) for submission to NDIA. $2400 equates to a maximum of 12hrs of therapy – by the time assessments and reports are written, that equates to less than 1 therapy session per 2 months, not including any other support needs the child may need. Multidisciplinary therapy, which the NDIA acknowledges to be of the highest benefit to autistic children, is not possible with such low levels of funding.

The Autism Early Intervention Consultation paper proposes set funding levels for two age groups, under 7yrs and 7–12yrs (pages 27–31). Disturbingly the consultation paper suggests four levels of funding, with the minimum amount of funding allocated for an entire year being only $4000 for children aged 0–6 years, and $2400 for children aged 7–12 years.

Equally concerning are the maximum funding amounts being proposed by NDIA for autistic children. For children aged 0–6 yrs, the maximum funding amount proposed is $35,000, and for children aged 7–12 yrs, the maximum funding amount proposed is $21,000. These maximums are for an indicative level of funded support of Level 4, where the Independent Assessment reflects three areas of high need with possibly one to three medium-low areas identified, or equipment needs also identified. This is the maximum funding amounts recommended in the consultation paper for children who are non-speaking, and unable to communicate their needs, inclusive of children with self-harm and aggressive behaviours.

In addition to this, NDIA proposes to drastically reduce funding in the NDIS plans of autistic children by 40–45% each year, assuming they are not ‘cured’ in the first 12 months.

For context, prior to NDIS, Helping Children With Autism (HCWA) funded up to $12,000 for early intervention at a maximum of $6,000 per year. The WA government also funded four hours of early intervention therapy per week for all autistic children until they turned six years of age. Additionally people were able to access some therapy supports through the Health Department and the Disability Services Commission. Those supports are no longer available – defunded as part of the WA Government’s 50% contribution toward the cost of delivering the NDIS designed to replace and improve on these earlier supports.

The proposals suggest that if the Government and NDIA proceeds with these proposals there will be an extremely high risk of increased relinquishment of autistic children to state care, requiring much higher support throughout adulthood had their support needs been adequately funded in childhood.

e Note also is the deceptive case study presented in Appendix One (p36) of the consultation paper. NDIA presents an example of a family requesting funding for the difference between private swimming lessons costing ‘Jenny’, who is aged 4 years old for building community inclusion.

families frequently request this reason because many autistic children cannot learn life-saving skills within group settings needing private sessions often lasting several years learning

SWAN Joint Standing Committee Submission – Independent Assessments Page 9 of 12

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The Government’s actions stem from mistrust towards individuals living with disabilities and their families.

and retain this vital skill. Many autistic children are drawn to water, have limited or no understanding of risk or protective behaviours, and many are ‘runners’. Autistic children are at significantly higher risk of drowning than their peers.

All of the changes proposed by the Government and the NDIA are being driven by a distrust of people with disability and their families, and assumptions that NDIS participants are spending their funding fraudulently (rorting the system). We have laws regarding fraud in Australia. During the entire course of the NDS since commencement, there has not been a single NDIS participant charged with defrauding the scheme. Numerous NDIS registered providers have been charged with defrauding the scheme, and despite this fact, the Government and NDIA plan to significantly reduce funding in NDIS plans, reduce participant choice and control, and give greater powers to providers, enabling an increase in their ability to defraud the scheme.

Our Recommendations

• The proposed Individual Assessments must not commence in the format proposed.

• There must be no change to the NDIS Act 2013. People with disability and their families need the opposition, minor parties and the senate to block any changes to the current NDIS legislation, which reflects the original purpose, scope and goals of the scheme.

• All changes to NDIS processes and requirements must be made only after extensive consultation with disabled people and their families has been undertaken. NDIA is proposing to make sweeping, non-negotiable changes to process which will have significant and far-reaching impacts on people with disability and their families, with substantial risk of harm. These risks are entirely due to the fact that these non-negotiable decisions have been made entirely without consultation with people with disability and their families.

• There must be meaningful co-design of all NDIS processes and any changes. This means significant and widespread consultation with disabled people and their families, the disability sector, service providers and other stakeholders. This consultation needs to include the peak bodies for the various allied health professionals, with no limitations on feedback to be provided.

• The proposed Independent Assessments need to be thoroughly examined for negative impacts against the NDS Act, especially with regard to the crucial area of choice and control. With special consideration given to ensuring that the human rights of people with disability is protected.

• Participants subjected to Independent Assessments must have the right to appeal the results of the Independent Assessments, including the ability to undertake a second assessment or seek some form of arbitration if for whatever reason they are dissatisfied with the assessment.

• There must be no changes to the NDIS legislation.

SWAN Joint Standing Committee Submission – Independent Assessments

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• The primary issues with NDIS are due to internal NDIA and contractor processes and systems, rather than problems with NDIS participants and families. As noted in the Tune Report prior to being amended by the NDIA and DSS. We recommend:

  • The staffing cap at NDIA must be removed, and resourced with direct employees rather than private contractors. This will aid in addressing the high staff turnover at NDIA
  • NDIA must implement meaningful training of staff – codesigned with people with disability and families.
  • Staff KPIs at NDIA and Partners in Community must prioritise quality (eg. Participant satisfaction, lower number of S100 Reviews etc) over quantity – this will have the greater reduction in AAT appeals than will the proposed changes.
  • Currently, most participant plans are drafted by an LAC before being submitted to an anonymous NDIA delegate who often removes many reasonable and necessary supports. NDIS participants must be provided full name and contact details of NDIS representatives making decisions affecting their supports. Anonymity breeds disrespect - there are no repercussions for harmful decisions.

• Disabled persons’ organisations should be resourced to consult directly with their members and the wider community regarding:

  • Access to assessment and diagnostic services
  • Their experiences with government appointed doctors and assessors (eg. Job Capacity Assessments through Centrelink)
  • Their experiences with standardised assessment tools
  • Any other relevant issues raised

• Particular consideration should be given to the issues facing people with disability in regional and remote areas of Australia. Access to suitable therapists is severely limited in these areas, and contracting desperately needed therapists to provide Independent Assessments to the area rather than actual therapy would be extremely detrimental to people with disability.

• When rolled out, Independent Assessments must be an option, rather than compulsory. There is clearly a role for optional free Independent Assessments to gain access to the NDIS for people unable to afford expensive diagnostic assessments, however such assessments should not be forced on existing NDIS participants who have the right to choice and control regarding therapists performing assessments on them. It is important to note, however, that NDIA have stated that after the commenced changes, people with disability will still be required to have a formal diagnosis in order to gain access to the Independent Assessment, to possibly gain access to the scheme. This is likely to still be at high cost to the person with disability and their family. During the recent Senate Estimates session, NDIA CEO Martin Hoffman advised that the organisations selected to deliver the Independent Assessments will be paid per IA conducted. It’s obvious that such a system of payment will result in low quality, rapid assessments churned out by the organisations, who will likely impose quantitative KPIs to ensure maximum profit. This is clearly dangerous and harmful to people with disabilities. Being forced to undergo yet another assessment which has the ability to eject people from the NDIS risks further trauma in people with disability, psycho-social repercussions, depression and anxiety further impacting their functional capacity after the assessment has been conducted.

• Funding for advocacy, the National Disability Strategy and for Information, Linkages and Capacity Building (ILC) needs to be considered. People with disability and their families rely on Disabled Persons and Families Organisations (DPFO) for independent

Conclusion and Contact Details

As an organisation with more than 12 years’ experience negotiating, advocating and working in the disability sector, supporting and advocating for hundreds of people with disability living in regional WA, SWAN has an excellent understanding of the potential risks associated with introducing Independent Assessments in the current proposed format and are deeply concerned about the potentially dangerous consequences for people with disability and theiramilies.

As the peak body supporting people with autism in the south west region of WA, we would b be happy to talk with someone from the Joint Standing Committee regarding these issues. It is very clear that the Independent Assessments and proposed changes are driven by mistrust of disabled people and cronyism, and aimed at reducing the overall number of NDIS participants.

Thank you for investigating these issues. These changes are potentially life threatening for some people, and like 430,000 Australians with disability and their families, we are very concerned about the consequences.