A Pacific community health organisation says Pasifika families caring for disabled relatives are facing significant financial strain, with no clear indication of what additional support they can get.
Parliament passed the government’s Disability Support Services Bill at its third reading on Tuesday.
Disability Issues Minister Louise Upston said the legislation was a step closer to a future carers’ package.
The Disability Support Services Bill, which had received submissions from more than 3000 people, looks to provide a legal framework for the delivery of disability support services (DSS) funded by the New Zealand taxpayer.
Disability Issues Minister Louise Upston
RNZ / Marika Khabazi
However, it remains unclear how these legislative changes would bring practical benefits to help care workers and family carers in their everyday lives.
Vaka Tautua is a Pacific community health, disability and social services provider serving families across Auckland, Wellington, Canterbury and Otago.
Chief executive Moananu Anna Redican-Kolose said carers had been frank in their feedback about the challenges they had faced.
“They’ve told us very plainly that caregiving means they often have to walk away from paid work,” Redican-Kolose said.
“The financial supports available don’t come anywhere close to replacing that lost income,” she said.
Redican-Kolose said caregivers’ mental health has worsened because of the limited support they receive.
“The mental distress and the anxiety that they experience is quite exacerbated.
“We’ve done a lot of engagement with them to understand what those pressures are, so I’d say that their mental health is highly impacted.”
She said Vaka Tautua care workers were direct family members to those who needed support, and all they wanted was for their lived experiences to be heard when dealing with issues that affect them.
“There was a young father who had children with autism, who said if they could just come and understand what our lived experience is like, what our lives look like, then they will know what the issues are for us.”
Unclear future
Redican-Kolose said the hard times faced by some families with disabled family members demonstrated the social development system was struggling to keep up.
“I spoke with one family recently who had been living in their car with their children, which included a child with a disability, while they were waiting for social housing.”
In a press release following the select committee report on the Bill, Upston said the government had committed to $2.1 billion in additional funding through successive budgets, which meant DSS now had “more ongoing funding to support disabled people than ever before”.
A spokesperson for Upston said work was underway on a carers’ support package focused on helping carers stay well, safe and able to continue in their caring role.
They said during the select committee process, many carers told the committee about the pressures they face and the impact caring can have on employment, income and wellbeing.
This work will consider access to respite, practical supports and options for financial recognition.
A sector advisory group is being established to support this work.
