Whānau & Carer Resources
Supporting Those Who Care
Caring for a family member living with a neuromuscular condition is an act of deep dedication, but you cannot pour from an empty cup. MDANZ is here to support your wellbeing, rights, and peace of mind.
How MDANZ Supports Whānau & Carers
Respite & relief funding
Guidance on accessing government Carer Support allocations.
Help applying for relief grants when extra support is needed.
Counseling & wellbeing
Up to 3 free, funded counseling sessions per year.
Confidential support for burnout, relationship stress, and life changes.
Peer networks
Regional carer morning teas, coffee groups, and virtual meetups.
Peer-to-peer connection with other families on similar journeys.
Systems & advocacy
Hands-on help from Fieldworkers to navigate Whaikaha, WINZ, and ACC.
Advocacy support for school, housing, and healthcare meetings.
Navigating carer funding & respite options
Understanding the options available to help you take a break or cover caregiving costs.
Carer Support Subsidy
A subsidy that contributes towards the cost of hiring a carer or paying for out-of-home respite so primary carers can take a break.
Individualised Funding (IF)
Gives you direct control over your allocated disability support budget, allowing you to employ your own support workers or family carers.
Bradley Jenkin Memorial Fund
An MDANZ discretionary grant providing financial assistance for specialised equipment, carer relief, or opportunities not covered by government funding.
Need Help Navigating Carer Support?
Every family’s situation is different. If you need help applying for carer funding, arranging respite, or simply want to talk to someone who understands, our Fieldwork team is here to support you.
Curated whānau & carer external library
Direct access to essential guides, planning toolkits, and national carer advocacy bodies:
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Carers NZ & Carers Alliance: The national body advocating for family carers across Aotearoa, offering practical advice and respite guides.
Emergency Care Planning Toolkit: Step-by-step guides to creating a backup care plan in case you are suddenly unwell or unavailable.
Workplace Rights for Carers: Employment New Zealand guidance on requesting flexible working arrangements to manage caregiving responsibilities.
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TELUS Health Counselling Services: Access MDANZ-funded 1-on-1 sessions and online CBT modules (CareNow) for sleep, stress, and anxiety.
Carer Wellbeing Guide (Healthify): Practical strategies for recognising caregiver stress, burnout signs, and maintaining personal boundaries.
1737 – Need to Talk?: Free 24/7 call or text service to talk through feelings of exhaustion or stress with a trained counselor.
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Young Carers NZ: Specialised resources and support networks for children, teens, and young adults supporting a parent or sibling.
Connecting young members and siblings with peer activities, camps, and outdoor challenge opportunities.
Rare Disorders Parent Guide
Rare Disorders has just released a guide for parents and caregivers of children diagnosed with a rare disorder, titled Raising a child with a rare disorder: A guide for parents and caregivers living in Aotearoa New Zealand.
This booklet has been created by Rare Disorders New Zealand to help parents and caregivers navigate the path in caring for a child with a rare disorder in New Zealand. By gathering insights and advice from parents and caregivers who share this journey, as well as information and resources that may help along the way, we hope to provide a guide of sorts – to help find what works best for each whānau. While we do not have all the answers, we hope this guide provides reassurance that there are many others going through a similar journey and that support is available.