The Government's decision in the May 2013 Budget to provide only minimum wage payments to families supporting high needs disabled adult children has stunned the carer community.
"It sends the message that family carers aren't valued as much as other caregivers, when they know that the quality of support they provide is as good as, and often better than, what could otherwise be on offer," says Roger Palairet, chair of Carers NZ and Secretariat of the NZ Carers Alliance of 45 national not for profits.
"Carers also feel angry and bullied because the Government has passed a law which enables it to legally breach the Bill of Rights Act, and in so doing has further marginalised disabled people and their families who are already one of the most vulnerable groups in our society."
He says that while the policy is a welcome and long overdue recognition of parents in long-term caring situations, carers are disappointed that it only applies to those supporting adult disabled children. It fails to recognise similar sacrifices made by families of disabled children and parents, and those caring for spouses and older relatives, while also offending human rights advocates, the Law Society, and the wider legal fraternity.
Delight that $23 million dollars per annum was to be allocated to enable family caregivers to be paid for work that would otherwise have to be done by government funded agencies has given way to frustration, disappointment, and a sense of betrayal now that the detail of the new policy has been announced, says Mr Palairet.
"Although an opportunity to discuss extending the scheme to other categories of carers is on offer, what has particularly incensed carers is the legislation that was rushed through Parliament under urgency without any consultation, stripping families of their right to legally challenge the policy on the grounds that it unjustifiably discriminates against them based on their family status."
The Carers Alliance is calling on opposition political parties to commit to repealing the new legislation if they are elected, so payment for family members with high support needs is available fairly without discrimination in the future, he says.
Carers NZ and the Alliance are preparing an online survey to give carers and their supporters a voice in the aftermath of the Government's payment announcement and introduction of the new legislation. Hundreds of responses are expected, and feedback from carers will be sent to Health Minister Tony Ryall, architect of the Government's new policy. The not for profit sector will also promote an online petition being planned by disability advocates.
Despite disappointment about the new policy, there are many other areas where carers need better support, such as access to quality services, respite, helpful information, and learning, says Mr Palairet.
"This is work that will never be done. We have to make progress where we can, while pursuing improvements in the unfair payment policy."
More than 420,000 New Zealanders support frail, ill, or disabled family members and friends, according to Census 2006. The new policy will benefit about 1,600 carers of high needs disabled adults.
Roger Palairet, Carers NZ Chair, Secretariat NZ Carers Alliance
Phone 04 499 9463
Mobile 027 276 1146