Disability bill criticised for ‘picking on the most vulnerable’

Wednesday, 1 July 2026

Daniel Jackson, right, cares for his wife Lesley, who has progressive multiple sclerosis. External carers also help, and the couple fear what could happen if that aid is lost.

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.

The Governance and Administration Select Committee is hearing submissions on the Disability Support Services Bill.

“They are picking on the most vulnerable people in our community,” she said.

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.

Daniel Jackson said he would be forced to give up his interests, including being a volunteer fireman.

Evidence from a recent 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 president Neil Woodhams is urging Parliament to reject the bill.

Multiple Sclerosis New Zealand (MSNZ) president Neil Woodhams, who presented an oral submission representing 5000 people with MS to the select committee on Tuesday, 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.

Minister for Disability Issues Louise Upston says Government funding supports about 55,000 disabled people in the community and residential care.

Across all conditions, the value of unpaid family care is estimated to exceed $17 billion annually.

Retired KC Sir Hugh Rennie, a friend of the Woodhams family, agrees the bill is highly problematic.

“In my 60 years in the law, it’s the worst bill in concept, drafting and wrongful exercise of Crown power I’ve seen,” he said.

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.

“Eligible disabled people, their whānau and carers will continue to receive the support they rely on.”

“This bill makes clear that families and whānau have responsibility for the wellbeing of their members in the first instance and where appropriate.”

“This reflects the way that DSS already works. It doesn’t mean that DSS won't help where disabled people’s families support them.”