Submission on the future of Disability Support Services

Rare Disorders NZ has made a submission to Disability Support Services on how their services could be best provided in the future.

As one of our seven priorities, RDNZ advocates for developing an easily accessible pathway to information on support services available to those with a rare disorder.

We support the key characteristics of Enabling Good Lives and believe these are essential to the role and purpose of Disability Support Services.

People cannot be split in half but the current system wants to separate people's disability from their health condition, which for many with a rare disorder is actually all part of one syndrome or disorder.

RDNZ asks flexibility for funding spending to be returned to what it was before 18 March 2024, and we also highlight that carer support is meant to support carers and parents. The Government must recognise and value carers.

In 2023, RDNZ conducted the largest ever survey of consumer reported outcomes for people with rare disorders in NZ. Our responses in this submission draw on information gathered in this survey including direct anonymised quotes from our community.

Read our full submission here.