NDIA Accountability Project

Lymphoedema management and NDIS support needs

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Submission to Senate Standing Committees on Community Affairs

Re: National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1)

Bill 2024 [Provisions]

I am an adult NDIS Participant. I have a physical disability, being lymphoedema to the upper left quadrant of the body as a result of breast cancer treatment.

My impairment can not be cured but it can be maintained with ongoing multi-modal treatment. If this multi-modal treatment is not ongoing at the recommended gold standard the impairment worsens and functional capacity deteriorates.

Unfortunately this is exactly what has happened over the years as I did not meet the criteria for treatment under Western Australian state services and could not afford financially to privately fund to the level necessary to maintain my impairment.

As a result my impairment worsened and my functional capacity deteriorated until eventually it was so poor I was accepted onto NDIS under the disability criteria at AAT after a number of years of both the state saying it was an NDIS responsibility and the NDIS saying it was a state responsibility.

Under NDIS my quality of life has significantly improved and I am finally getting the multimodal treatment required to appropriately manage my disability.

I am concerned that the proposed NDIS bill will result in a return to the situation I was in previously with the state and NDIS both passing me from one to the other with neither party providing appropriate support while my quality of life and level of disability worsens.

These amendments to the NDIS provide no clarity and will likely result in a return to where I was prior to admission to NDIS. It does matter to me whether my support needs are met by the State or by NDIS. What does matter is that they are sufficiently funded by a party who accepts responsibility for meeting my complete support needs without out of pocket expense to me.

What is currently provided by the State of Western Australia is insufficient to maintain my disability at its current level of functioning which will result in further deterioration to my quality of life and a contravention of my human rights. Until sufficient details are released to ensure my support needs will be adequately met I am not prepared to support these legislative amendments.

Of specific concern in relation to the Bill;

  • Item 14 – proposed new Section 10 definition of NDIS support o While my disability would meet the criteria of s10(a) without details of the rules as to s10(b) included and s10(c) excluded supports it is not possible to determine whether my disability would fall within or outside the scope of NDIS. The use of the APTOS as a transitional measures provides no clarity and I will be back to being passed between the State and NDIS with neither accepting responsibility while my impairment continues to worsen without access to the appropriate supports.
  • Item 18 – amendments ti Subsection 21(2) o It is likely that when I am provided with appropriate supports I would no longer meet the access criteria. However if my supports are reduced my condition

  • Item 25 – amendments to Section 27 o No information has been provided as to the method or criteria to be applied so it is not possible to understand how my specific disability type will be regarded. As has previously been experienced no support was available to me under the state system resulting in significant worsening of my condition.

  • Item 30 – Subsection 30(2) o The new subsection 30(2) says that the CEO ‘may’ make one or more requests, that is there is no requirement for the CEO to do this before removing a participant from the scheme.

    o  The new subsection 30(3) states the CEO may request an assessment, it does
          not say whether the assessment is to be performed by someone chosen by the
            participant or the NDIA or who will pay for this assessment. Independent
         assessments were previously considered and withdrawn following significant
        community consultation and negative feedback.
 
o  The new subsection 30(4)(b) requires reports to be received within 90 days. It is
          impossible to get appointments with many specialists within 90 days,
             particularly if the requested report is for a specialty area you do not have a pre-
             existing relationship with.

  • Item 36 – Section 32L o At this point in time there is no information provided regarding the assessment tool to be used and whether it will be suitable in assessing my type of disability and whether it will result in appropriate funding to sufficiently fund my support needs.

    o  This section also specified that only the impairment that the participant has met
         access is to be considered. The Australian Parliament’s Joint Standing
        Committee on the NDIS (’JSC’) Inquiry into the Capability and Culture of the
        NDIA in its final report released in November 2023, made a recommendation
            that the NDIA considers the totality of a person’s disabilities. This ‘whole of
           person’ approach aligns with the recommendations of the NDIS Review and a
            series of AAT decisions.

  • Item 54 - Section 36(3) o As previously detailed it is not possible to get appointments and a report written with many specialists within 28 days.

  • Item 102 – Subsection 99(1) o The adequacy of the assessment tool used in section 32L to provide sufficient funding to meet the necessary supports is not listed as a reviewable decision. What safeguards are in place to ensure that sufficient funding is provided to meet current best practice for the relevant impairment.

    o  There is no mention of the qualifications of the person using the assessment tool
        and whether they will have any knowledge in me and my support needs or my
            specific disability type and best practice supports.

  • Item 124 – Applied principles and Tables of Support

  • As previously detailed this table provides no clarity and will result in being passed back and forth between the state and the NDIS as was previously the case until my disability deteriorated sufficiently to be accepted by NDIS following the AAT process.