New Govt bill ‘picking on the most vulnerable’
Thousands of disabled people and their families could be left bearing an even greater burden under proposed disability legislation that critics say risks shifting responsibility from the state onto those already struggling to cope.
Motueka woman Lesley Jackson, who lives with progressive multiple sclerosis, is speaking out against the Government’s proposed Disability Support Services Bill, which sets out that families, where appropriate, have responsibility in the first instance for the wellbeing of individuals. She said there were serious concerns that the bill sets out that people should use family support before being provided with funded disability support services. “They are picking on the most vulnerable people in our community.”
Her husband, Daniel, is her part-time carer, but she also has other carers for five hours a week. “If those carers are taken away, he is it. I do as much as I can for myself but some days I can’t get out of bed in the morning, I can’t shower on my own. That’s putting a huge amount of pressure on one person,” she said.
He said he would be forced to give up his interests, including being a volunteer fireman.
Evidence from a UK study found among 275 married women with MS, 53% reported psychological abuse, 63% economic abuse, 34% physical abuse, and 20% sexual abuse, Lesley Jackson said. “Forcing greater reliance on family carers without genuine choice is not empowering. It can expose people to risk, erode independence, and place unsustainable pressure on families themselves.”
She urged the Governance and Administration Select Committee considering the bill to listen to the disabled community and ensure the social system enables people to have good lives, rather than putting new risks and burdens on those it is meant to support.
Multiple Sclerosis New Zealand (MSNZ) president Neil Woodhams, who presented an oral submission representing 5000 people with MS to the select committee yesterday, said many families are already stretched to breaking point by the financial, emotional and physical realities of living with disability.
He suggested the bill had been rushed through and appeared designed to limit Government liability rather than improve support for disabled people
“Families caring for disabled loved ones are not a cost to be minimised or a source of free labour to be taken for granted.
“Every day, thousands of New Zealanders quietly provide complex, around-the-clock care that keeps people safe, healthy and out of hospital. Instead of recognising and supporting that contribution, this bill risks asking them to carry even more of the load.”
Legal decisions by the Supreme Court have ruled that some family carers providing disability support could be considered employees of the Crown, and MSNZ says the proposed legislation seeks to override those implications.
Research cited in the submission estimates family carers of people with MS provide around three million hours of unpaid care a year, with an estimated economic value of $27.5 million. Across all conditions, the value of unpaid family care is estimated to exceed $17 billion annually.
Minister for Disability Issues Louise Upston said, when introducing the bill to Parliament, it would improve consistency, fairness, transparency and sustainability.
She said the introduction of the bill did not change existing services, funding allocations or who can receive disability support services. “This bill makes clear that families and whānau have responsibility for the wellbeing of their members in the first instance ...”