Mar 20, 2023, 2:38 PM

Rare Disorders NZ has made a submission to the Pae Ora Health of Disabled People Strategy.

For most rare disorder patients, they experience forms of disability as a result of their condition. Unfortunately, the existing disability support system has proven unable to consistently meet the needs of the rare disorder community in New Zealand.

Rare Disorders NZ recommends that:

  • New Zealand introduce personal care plans to cover an individual’s health, education and disability care needs. These overarching integrated care plans would allocate responsibility for the delivery of services to specific levels of government.
  • An urgent review of delays in access to equipment is undertaken to ensure that those with a rare disorder receive approved equipment in a timely manner.
  • A ‘fast tracking review’ category for people with rare disorders who have been identified as having permanent and significant disabilities is incorporated. This would allow quicker access to additional support when required through consultation with clinicians.
  • New Zealand recognise those with a rare disorder often have hidden disabilities yet still need to be categorised as Disabled.
  • New Zealand recognises those with an undiagnosed rare disorder are still disabled and should have access to disability services.
  • New Zealand recognises that people living with a rare disorder have complex medical issues as well as disability issues, it is not just one but frequently both exist.
  • New Zealand recognises that due to the lack of an official data registry on rare disorders, people living with a rare disorder often do not fit a ‘tick box’ on a form and therefore may need personalised patient-centred care tailored to their circumstances.
  • New Zealand recognises that given 72% of rare disorders are genetic and many rare patients will have these disorders for life, they should not have to be subject to reassessments of their condition.

Read the full submission here.

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