Multiple Sclerosis NZ recently made two submissions on public consultations on matters that would have an impact on people affected by MS in our community.
As an organisation which represents the views and needs of our community, participation in our consultation meetings is profoundly important to ensuring we communicate the right message. Our grateful thanks to those with lived experience who shared their views to help inform these submissions. The generosity of your time is extremely valued.
Carers’ Strategy Action Plan
Multiple Sclerosis New Zealand (MSNZ) has submitted on the New Zealand Government’s draft Carers’ Strategy Action Plan. Our submission acknowledges some positive steps in the draft plan but calls for greater ambition, accountability and urgency.
We welcomed the flexibility of a rolling Action Plan but raised concerns about the lack of clear accountability mechanisms, timelines and outcome reporting. On the immediate deliverables, we found the language and scope underwhelming for a fourth-generation strategy, urging government to build on the substantial evidence already gathered rather than restart information-gathering exercises.
Our submission highlights the enormous contribution of family and whānau carers, providing an estimated $17 billion in unpaid care annually, while facing significant mental, physical and financial hardship themselves. We called for concrete action on respite, mental health support, financial relief and employment retention, and for carers of people with long-term progressive conditions to be explicitly recognised.
We emphasised that meaningful partnership with carers, their representatives and the NGO sector is essential to implementation, and that the Action Plan must have dedicated investment, not simply piggyback off other government budgets.
MSNZ Submission to the Total Mobility Consultation – 19 March 2026
Total Mobility Consultation
NZ Transport opened consultation to consider options to strengthen this critical programme which provides a lifeline to the community for many people with disabilities. Rhis submission draws on the lived experiences of people with Multiple Sclerosis (MS) to highlight critical failures in New Zealand’s Total Mobility scheme and public transport system.
Community members report unsustainable financial pressure, with some spending over $80 a week on transport and making difficult choices about which health appointments to attend. We heard of serious safety concerns, with people being left stranded in unsafe conditions, drivers lacking the skills to operate hoists, and inadequate complaints processes that expose disabled people to further harm.
The submission challenges the narrow framing of transport as purely a medical necessity, arguing that social connection and mental health must be recognised as equally valid reasons for travel. Widespread failures in bus accessibility, from poorly designed infrastructure to undertrained drivers, compound the barriers people with MS face daily.
We call on decision-makers to increase Total Mobility allowances, make transport to health appointments free, invest in driver education, and embed universal design across all public transport.
This submission makes clear that people with MS feel out of sight and out of mind. That must change.