Disability campaigners presenting a petition calling for better accessibility in 2021. Photo: RNZ / Dom Thomas
The government's move to narrow disability support funding criteria is "beyond comprehension", a support group for patients and families dealing with rare health conditions says.
Rare Disorders NZ chief executive Chris Higgins said it was "disturbing" that the minister for disability issues was insinuating that parents were using funding for their own personal enjoyment rather than for their children.
The Ministry of Disabled People announced through a Facebook post on Monday that it was making changes to its Purchasing Rules and Equipment and Modification Services with immediate effect.
Higgins said the changes will limit disabled people and their carers getting to choose how funding can support their specific needs.
"New Zealand already has a poor record when it comes to accessibility for disabled people. Further limiting their choices and opportunities is beyond comprehension," he said.
"For disabled people living with a rare disorder, their needs are often unique and won't necessarily fit into a tick box."
He said families should be trusted to decide for themselves how best the support funding can meet their needs, not the government.
"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," Higgins said.
"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."
Rare Disorders NZ's survey of the rare disorder community last year found only 16 percent of carers had some respite care in the last 12 months, while a further seven percent of people who qualified for respite care were unable to use it.
