NDIA Accountability Project

This project is in DRAFT

Number of participants with hypermobility or Elhers-Danos Syndrome

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FOI 23/24-0666

Scope

  • I would like to request under FOI how many participants having a disability listed as Autism Spectrum Disorder have Hypermobility listed as a secondary disability
  • I would like to request under FOI how many participants have Hypermobility or Elhers Danos Syndrome listed as a primary or secondary disability
  • I would like to request under FOI how many participants having POTS listed as a primary or secondary disability
  • I would like to request under FOI how many participants have Fibromyalgia listed as a secondary or primary disability
  • I would like to request under FOI the average funding package for a participant with a primary disability of EDS or Hypermobility

Response

  1. I would like to request under FOI how many participants having a disability listed as Autism Spectrum Disorder have Hypermobility listed as a secondary disability. According to our records, we do not have any access requests explicitly listing ‘hypermobility spectrum disorder’*. However, it is possible that there exist access requests applied by people with such disability but not listed in the records.

    • The most relevant International Classification of Diseases according to World Health Organisation is M35.7 – Hypermobility syndrome.

  2. I would like to request under FOI how many participants have Hypermobility or Elhers Danos Syndrome listed as a primary or secondary disability As at 30 September 2023, there were 693 participants with Q79.6 Ehlers Danlos* as primary or non-primary disability.

    • The most relevant International Classification of Diseases according to World Health Organisation is Q79.6 - Ehlers Danlos. ** There is currently a lack of guidance over the definition of a secondary disability and the level of evidence required to support entry onto the system. This has led to inconsistent reporting of secondary disabilities, noting that 69% of Scheme participants had no recorded secondary disability as of 31 March 2023. As a result, the NDIS generally does not report on secondary disabilities for Scheme participants.

  1. I would like to request under FOI how many participants having POTS listed as a primary or secondary disability According to our records, we do not have any access requests explicitly listing ‘Postural orthostatic tachycardia syndrome (POTS)*. However, it is possible that there exist access requests applied by people with such disability but not listed in the records.

    • The most relevant International Classification of Diseases according to World Health Organisation is G90. A for Postural orthostatic tachycardia syndrome (POTS)

  2. I would like to request under FOI how many participants have Fibromyalgia listed as a secondary or primary disability As at 30 September 2023, there were 396 participants with M79.7 Fibromyalgia* as primary or non-primary disability.

    • The most relevant International Classification of Diseases according to World Health Organisation is M79.7 Fibromyalgia ** There is currently a lack of guidance over the definition of a secondary disability and the level of evidence required to support entry onto the system. This has led to inconsistent reporting of secondary disabilities, noting that 69% of Scheme participants had no recorded secondary disability as of 31 March 2023. As a result, the NDIS generally does not report on secondary disabilities for Scheme participants.

  3. I would like to request under FOI the average funding package for a participant with a primary disability of EDS or Hypermobility According to our records, we do not have any access requests explicitly listing ‘hypermobility spectrum disorder’*. However, it is possible that there exist access requests applied by people with such disability but not listed in the records.

    • The most relevant International Classification of Diseases according to World Health Organisation is M35.7 – Hypermobility syndrome. As at 30 September 2023, the average annualised plan budget of the current plans of the active participants with Q79.6 Ehlers Danlos as primary disability is $91,000.