TAURANGA: Mount Maunganui’s Stacey Roche says she is “dependent on people to be independent”.

The former Paralympian, who has cerebral palsy and uses a wheelchair, receives funding from the Government’s Disability Support Services (DSS) and employs support workers for three to four hours a day.

Roche believes the proposed DSS Bill, introduced by Minister for Disability Issues Louise Upston in May, threatens that.

She believes the bill would “compromise my ability to hire who I want to hire” and may “force” her to rely on family members.

“My mum and dad have given me so much … they can’t help me and I wouldn’t want them to help me.”

Upston says the bill represents the “current state” of DSS and that no additional expectations will be placed on families of disabled people.

She says “improvements” to the bill were made after the Social Services and Community Select Committee’s recommendations, reported on August 13.

The bill’s second reading was in the House on Tuesday.

The bill proposed to clarify the purpose of DSS, including how funding is used and clarifying that the Crown is not the employer of family carers after a Supreme Court landmark ruling in December.

It said the purpose of DSS-funded services was to help those eligible “live their everyday life”, accounting for their needs and circumstances.

Roche, 48, said she felt the bill was trying to “make my life smaller”.

In 2000, she captained New Zealand’s boccia team at the Sydney Paralympic Games. She worked as an advocate for people with disabilities for the Halberg Foundation for many years.

She is on the Parafed Bay of Plenty board and played wheelchair rugby in this year’s Healthvision Festival of Disability Sport.

“I have a really big and fulfilled life.”

If the bill went through, she said, she would have to go back to her family, although ”I haven’t been supported by them for about 30-odd years”.

Roche attended a demonstration opposing the bill on August 15 in Mount Maunganui.

“Kill the Bill,” was her message.

Tauranga disability advocate Juliana Carvalho helped organise the demonstration — one of eight nationally — “to stop the DSS Bill”.

Carvalho became disabled in May 2001 after becoming severely unwell. She has used a wheelchair since.

She receives funding from DSS to employ workers for home help, personal care and “access to community”.

Carvalho said the minister said the Bill would not put more expectations on families.

“But the Bill still says they have ‘a responsibility to contribute’ without defining what that actually means.”

Carvalho said decision-makers could still consider family and whānau support when deciding what funded support someone gets.

“That creates a real risk: the more your family helps, the more that help could be used to justify providing you less support.”

After Carvalho became paralysed, her family fed, showered and dressed her. She knew they would always support her.

“So please don’t tell disabled people that we need legislation to say our families should contribute to our wellbeing and care.”

Upston said she appreciated some people felt worried about the Bill and that improvements were made after the select committee’s feedback, informed by more than 3000 submitters.

They included:

Clarifying the Bill’s intent to represent the “current state” of DSS.
Making it “explicitly” clear DSS would continue supporting families by contributing to care for disabled people: “No additional expectations will be placed on families”.
Requiring formal consultation through disabled people’s representative organisations on future support programmes.
Reflecting the language of the United Nations Convention on the Rights of Persons with Disabilities and Enabling Good Lives in the bill.

Upston said the bill provided a legislative framework for the operation of DSS. It did not currently have one, which was a community concern.

She said the Bill’s aim was to ensure the system’s operation was formalised in law, “better enabling disabled New Zealanders to live a good, fulfilled and dignified life”.

During the Bill’s second reading, Upston said it would provide better consistency, fairness and transparency about how decisions were made.

The Bill would not change current eligibility, entitlements or support, she said.

Upston said the Bill had been amended to clarify a disabled person was “not expected to exhaust family support before support from DSS is provided”.

“The Bill does not establish new or unbounded obligations on family. It does not require family to be a disabled person’s primary source of support.”

Labour List MP and former Minister for Disability Issues Priyanca Radhakrishnan said Labour would not support the bill at the second reading.

She said several submitters shared concerns about an original clause that said family members had “responsibility in the first instance” for disabled people’s wellbeing.

The clause was changed to “families have a responsibility to contribute” after a select committee recommendation.

“That is a meaningful improvement … however, the bill still does not contain a clear guarantee that family care will always be complementary rather than a substitute for funded support and we are deeply opposed to that lack of clarification in this bill.”