Multiple Sclerosis New Zealand is calling on Parliament to reject the proposed Disability Support Services Bill, warning it could undermine the rights of disabled New Zealanders, place greater pressure on family carers and widen inequities across the disability support system.
The organisation, which represents more than 5,000 New Zealanders living with multiple sclerosis and thousands of whānau and carers, says the legislation has been developed without meaningful consultation and appears focused on limiting Government liability rather than improving support for disabled people.
MSNZ President Neil Woodhams is presenting the organisation’s submission to Parliament’s Governance and Administration Select Committee, arguing that many families are already under immense financial, physical and emotional strain while providing around-the-clock care for disabled loved ones.
The organisation says family carers are delivering highly skilled care that keeps people healthy and living independently while saving the country millions of dollars every year. Research cited in the submission estimates carers supporting people with multiple sclerosis provide around three million hours of unpaid care annually, with an estimated value of $27.5 million. Across all disabilities, unpaid family care is estimated to contribute more than $17 billion to New Zealand each year.
A major concern is that the proposed legislation could increase expectations that families provide support before people become eligible for state-funded assistance. MSNZ argues disability support should be based on a person’s needs rather than the financial circumstances or capacity of their wider family network.
The submission follows recent Supreme Court decisions that found some family members providing disability support services could be regarded as Crown employees. MSNZ says the Bill appears designed to override the implications of those rulings while giving ministers broad future powers without sufficient parliamentary oversight or accountability.
The organisation also points to significant unmet need within the disability sector. While approximately 181,000 people currently receive some form of disability support funding, recent figures estimate more than 850,000 New Zealanders live with a disability. Research also suggests fewer than one in five people living with multiple sclerosis currently receive disability funding.
MSNZ says those figures raise serious questions about access to support and argue that legislation should focus on closing those gaps rather than introducing measures that could further restrict eligibility.
The submission also highlights ongoing disparities between support available through the Accident Compensation Corporation and support provided to people whose disabilities arise through illness or long-term health conditions. MSNZ argues two people with the same level of disability should not receive significantly different support depending solely on how their disability occurred.
Another criticism is that key elements of the proposed framework, including eligibility, rights, complaints processes and accountability mechanisms, would be determined through future regulations rather than being clearly established in legislation. The organisation says this creates uncertainty for disabled people and concentrates too much decision-making power in the hands of future ministers.
MSNZ is urging the Government to withdraw the Bill and replace it with legislation developed alongside disabled people, family carers and representative organisations. It says any future framework should reflect the principles of Enabling Good Lives, uphold Te Tiriti o Waitangi and honour New Zealand’s commitments under the United Nations Convention on the Rights of Persons with Disabilities.
Former King’s Counsel Sir Hugh Rennie has also criticised the legislation, describing it as deeply flawed in both its drafting and approach to the exercise of Crown power.
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