Submission to the Joint Standing Committee on The National Disability Insurance Scheme:Independent Assessments.

Please withhold my name and address from publication. I have chosen to withhold these details as I am speaking on behalf of my young children who are not able to provide informed consent to allow me to make details of their life public.

Summary around our circumstances:

• I am a 44-year-old Mother of two boys, aged 9 and 7 with Autism Spectrum Disorder
  

  and other conditions.

• I have over 15 year’s experience working for a Workers’ Compensation Insurer and am
  

  now an undergraduate Occupational Therapy student.
• This is the first submission I have ever made to a Joint Committee
• One child is an NDIS participant via the Early Intervention stream (Not ECEI).
• The other child is a participant through the Disability stream.
• Both children are on their first plans. We have received modest, but appropriate funding to support our children’s therapy needs.
• Funding received has been used to access Speech Therapy, Occupational Therapy, Psychology and some continence aids.
• We would be considered one of the families from a high socio-economic area who have paid for “expensive reports” to receive funding through the NDIS.
• We have not purchased a yacht, nor paid for the services of a sex worker using NDIS funding.

Terms of Reference:

a.  the development, modelling, reasons and justifications for the introduction of

  independent assessments into the NDIS;

Spokespeople for the NDIA have used data demonstrating inequality of plans from suburbs with different Socio-economic profiles as a means to justify the introduction of Independent Assessments to the NDIA. Multiple media outlets have reported this unacceptable inequality is due to people in “high net worth” areas being able to pay more for expensive reports to help them get more funding for their children / themselves. The NDIA’s representatives have heralded the introduction of compulsory Independent Assessments as a way to improve this terrible injustice.

I do not accept the NDIA’s proposition. Instead, I would suggest that the reasons for discernibility in plan funding seen between areas of economic advantage vs. those living with economic hardship is twofold.

Firstly, the inaccessible nature of the Scheme and the adversarial way the NDIA conducts itself makes it nearly impenetrable to all but the highly educated, those with experience in dealing with complex guidelines and legislation or those with vast amounts of spare time and energy to understand and navigate the Scheme.

Secondly

The NDIA is completely correct to call out the discrepancy between plans based on location. However, the real issue is actually the inverse to what the spokespeople for the NDIA are suggesting. I would argue that participants from diverse and disadvantaged backgrounds actually have grossly underfunded NDIS plans. The notion that those with higher levels of funding have somehow deceived the NDIA into “over-funding” their plans is absurd.

If the NDIA believes this to be true, it leads to serious questions around why the NDIA was approving the “over-funded” plans, based on these “expensive reports” if there was no basis for it in their Operational Guidelines or Legislation?

A cynical person would suggest the NDIA’s true concern with these reports, is not that they are expensive and not accessible to all participants. The ultimate concern lies with the level of funding recommended in them.

Suggestion:

NDIA funded standardised assessments should be made available to facilitate equitable access to the scheme. However, participants should have a choice whether they would like an Assessment by an NDIA appointed Assessor, or with the AHP of their choice (including their own treating allied health provider). These assessments should only be required for entry to the scheme and when the PWD has experienced a significant change in their functional capacity or at a major life stage (such as when a child leaves school or moves out of home).

These assessments should not be required every time a plan is reviewed, nor should they be the sole factor for determining a participant’s funding.

The NDIA should fund the initial assessment to determine acceptance to the Scheme via a Voucher system that could be redeemed at the AHP of the prospective participant’s choice. This assessment could be used by the NDIA to help determine funding for the first NDIA plan, alongside any other information the prospective participant provides. Any future assessments required by the NDIA, would be funded through the participant’s plan.

This would avoid the need for a costly scheme operated by private companies for profit, selected by the NDIA through a less than transparent tender process.

To facilitate more equitable access for people from CALD or less advantaged socio-economic backgrounds an NDIA Advocate or Guide should be offered to all new participants. The NDIA Guide would work closely with the participant and their family to help them understand and navigate the complex scheme. The NDIA Guide should be able to provide plain language explanations of what information is needed to support access to the Scheme, how the Access decisions are made, as well as what information should be gathered prior to the Planning meeting and explain who funding decisions are made. The Guide should be available throughout the first 13 months with the Scheme to help the participant navigate access, initial planning meeting, reviewing funding received, through to the first annual review. The Guide should be able to communicate effectively with people from CALD and other diverse backgrounds.

d. the independence, qualifications, training, expertise and quality assurance of assessors

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An Independent Assessor (the Assessor) whilst being an AHP, may have little to no knowledge of an individuals circumstances or disability. There is also concern that the specialty of the AHP will not match the nature of the persons’ disability. That is a physiotherapist may assess someone with a psychosocial disability or a psychologist may assess the function of someone with quadriplegia. In these cases, the NDIA may be asking an AHP to undertake an assessment that is outside the scope of their practice. This could lead to the AHP being in breach of their Professions Code of Ethics.

It is my understanding that the Assessor undertaking these assessments will also not be able make recommendations as to what is appropriate funding for the PWD. Instead, they will input the raw scores and the NDIA will then calculate a funding package based on these raw scores. It is unclear if any information, assessments or recommendations undertaken by a participant’s own AHPs will be considered in this process.

This reduces the Independent Assessors role to that of a data collector. It denies them the opportunity to interpret the information and assess whether it is a true reflection of the Participants observed function on that day. It also denies the IA the ability to provide specific recommendations or ensure the data has been input correctly.

It is unclear whether the NDIA has consulted with the Authors of the proposed assessment tools to determine if the final reports can be generated without the input of the Assessor who undertook the assessment. Normally these tools are scored and then reviewed by an appropriate AHP prior to any final report being issued.

Suggestion:

Instead of outsourcing the assessment of participants for access or funding purposes, continue with the existing process of accepting standardised assessments, reports and recommendations from the PWD’s own treating AHP.

As suggested above, the NDIA should pay for a consultation and administration, scoring and reporting of an appropriate assessment for each new participant or as often as requested by the NDIA.

This will save the NDIA funds from contracting and monitoring external business to provide these independent assessments.

e. the appropriateness of the assessment tools selected for use in independent assessments to determine plan funding;

I have multiple concerns around the appropriateness of the assessment tools selected; the lack of detailed information provided by the NDIA in regard to why these particular tools were selected and whether these assessment tools are fit for the purpose of developing plan funding.

It is also unclear how the raw data collected from these assessment tools will be used to calculate funding for participants and if these tools are fit for this purpose. To the best of my

Independent Assessments

Submission 289

knowledge no large-scale studies have been done to validate the use of these Assessments as a valid or reliable way to determine funding for supports for PWD in general. Nor have they been validated as a way to determine funding for each separate disability type. (That is, could the funding needs of an Autistic child be accurately determined from a one-off Vinelands Assessment, etc.)

Suggestion: If the IAs are required by the NDIA, significant research needs to be undertaken prior to their introduction.

Failure to ensure these assessment tools are appropriate to determining funding of supports for PWD could lead to life threatening consequences for PWD. This could ultimately lead to the NDIA being found to be negligent in their support of a PWD. This has occurred recently in the United Kingdom where DSP assessments were found to have contributed to the death of a person due to lack of funding for appropriate supports.

For this reason alone, the introduction of IAs should be halted to ensure the NDIA is not at r risk of legal action.

general comments: in summary, the proposed introduction of mandatory Independent Assessments for NDIS p participants does not fit with any of the stated core values of the NDIA. IT has been done with at best cursory consultation with participants, their families, Disability Organisations and the Professional Bodies of each Allied Health professions. The NDIA has not been transparent in this process, nor has it addressed why these measures need to be introduced in such a hurried fashion.

mist importantly, and something that seems to have been largely overlooked by the NDIA is that these IAs will have life altering consequences for PWDs. In my personal case, they will determine whether my two newly diagnosed Autistic children will continue to receive the treatment recommended by their health professionals.

If they do not receive appropriate funding at this early stage, they may not learn the communication and social skills needed to be functioning members of society. Both boys have hopes and dreams. My eldest dreams of being a teacher, so he can help children with “different brains” like him. My youngest wants to be a scientist, so he can answer the questions that don’t have answers yet.

Without funding for ongoing Speech Therapy and Occupational Therapy they will struggle to develop the life skills required to be functioning and productive members of Society. Let alone reach their career goals. Their desires to participate in the world should be supported, and not snuffed out by the hurried introduction of an ill-conceived, financially motivated plan that will see seismic changes to the National Disability Insurance Scheme.