Disabled people and their families have delivered a petition to Parliament today calling for the Government's Support Services Bill to be scrapped, saying the legislation shifts responsibility from the state to families and strips away legal rights.
The petition, carrying nearly 16,500 signatures, was handed over by Victoria Coleman, whose 7-year-old son Levi travelled to the capital for the occasion. Levi has Down syndrome, autism and ADHD and is expected to need round-the-clock care for life.
"We just don't want to think about what the future looks like if this bill passes," she said. "This is all about the Crown," she added, saying disabled people and their families "can't be ignored".
Under the bill, families are responsible in the first instance for the wellbeing of their members, and a disabled person is expected to draw on their own resources — including from family — before funded support is provided. That's left the Colemans questioning what it could mean for their other children.
"With our daughter, does that mean she has to be a full support carer for the rest of her life, no options on her career path that she wants to be, just because she's a sister to someone with a disability?" father Tim Coleman said.
The bill would also extinguish current legal claims against the Crown and prevent some future ones. Critics say the Government is using it to limit its exposure to court payouts, while the minister said it was never intended that courts would decide an employment relationship.
Select committee submitters have also raised concerns about undefined terms and the bill's broad definition of family.
Multiple Sclerosis NZ president Neil Woodhams said the definition was extremely wide.
"Even my 14-year-old granddaughter is responsible, which is just ridiculous," he said, adding it forces back onto families responsibilities the Government has held since at least 1975.
One submitter said the bill would make her and three generations of her family legally liable to provide care ahead of government support, extending to siblings, aunts, uncles, nieces, nephews and first cousins.
Chief Ombudsman John Allen has separately warned the bill risks breaching the UN Convention on the Rights of Persons with Disabilities because of its emphasis on family responsibility.
"Whānau and family have the most immediate responsibility to support individuals with disability, and the reality is that not all whānau and family are going to be in a position to be able to do that," Allen said.
"They don't have the skills, they don't have the experience, they don't have the resources and the question is, if they say no, what happens?"
Minister for Disability Issues Louise Upston denied the bill shifts responsibility onto families, saying it simply clarifies how publicly funded support can be used.
"It doesn't change anything for families in terms of responsibility," she said, and rejected the Ombudsman's concerns: "I don't agree that it's a breach."
Labour has confirmed it would scrap the legislation if elected to government, after weeks of opposing it.
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