Rare Disorders NZ is alarmed that the Minister for Disability Issues is blaming carers for misusing support funding intended for their children as a reason for Whaikaha suddenly tightening how disability support funding can be used, without any consultation with the disabled community.

On Monday Whaikaha – Ministry of Disabled People announced through a Facebook post that it is making changes to its Purchasing Rules and Equipment and Modification Services with immediate effect. The changes will limit the flexibility for disabled people and their carers to choose how best the funding can support their specific needs.

“We know from the rare disorder community that there is very little support for carers looking after someone with a complex rare disorder. It is disturbing that the Minister is insinuating that parents are using the funding support for their own personal enjoyment rather than their children,” says Chris Higgins, Chief Executive of Rare Disorders NZ.

Rare Disorders NZ’s survey of the rare disorder community from 2023 found that only 16% of carers had some respite care in the last 12 months, while a further 7% of people who qualified for respite care were unable to use it as it was either unavailable or did not meet their requirements. According to the most recent State of Caring Report carers have much higher rates of anxiety, depression, loneliness, and poor physical health than the general population.

“The Minister should try living a day in the life of a carer and perhaps then she will understand why respite is so essential to mental health and wellbeing,” says Higgins.

The tightening of purchasing rules for disability funding also means that now travel-related costs for disabled people, their whānau and support people are excluded as are consumer electronics and recreation goods.

“New Zealand already has a poor record when it comes to accessibility for disabled people. Further limiting their choices and opportunities is beyond comprehension,” says Higgins.

“For disabled people living with a rare disorder, their needs are often unique and won’t necessarily fit into a tick box. Families should be trusted to decide for themselves how best the support funding can meet their needs, not the Government,”

“Families impacted by disability are doing it tough and need all the support they can get. These new changes are disrespectful and deprive disabled people and their carers of their liberty and inherent dignity to make their own decisions for what’s best for them.

“The Ministry recognises the increasing demand for funding support for families impacted by disabilities, so we urge the Government to prioritise a substantial increase in disability support in the upcoming budget,” says Higgins.

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