Help Shape the Future of Disability Funding

February 25, 2025 | Advocacy, Carer, Carers, Event, Funding, Life with MS, News, Survey

Consultation is underway across the country to help shape future disability funding and service models. This is your opportunity to have your say and we encourage you to do so, now more than ever.

Note: This consultation is for people who receive essential disability support after an assessment from a NASC or EGL site. This includes disabled people, their whānau, carers, and advocates.

The consultation does not include people who only receive supports from other agencies, such as Accident Compensation Corporation (ACC), Ministry of Education, Ministry of Health, Ministry of Transport or Work and Income.

What’s being consulted?

Disability Support Services (DSS) now reside under the Ministry of Social Development (MSD). DSS are looking to stabilise disability support services, so they are fairer, more consistent, more transparent, and sustainable into the future.

The consultation will support MSD to develop options for Government to achieve this and respond to the recommendations of the Independent Review of DSS before considering further work to strengthen disability support services.

DSS want your feedback on how they can clarify their assessment and allocation processes.  The aim is to improve the evaluation of disabled people’s needs and ensure consistency in decisions regarding the support they receive.

They also want your feedback on proposed criteria for access to flexible funding and changes to how the funding is used. There are two options for how the changes could be made:

• Option 1 links each person’s flexible funding to a plan.

• Option 2 amends the current purchasing rules.

https://www.disabilitysupport.govt.nz/

Our message to you!

Changes to Disability Support Services are coming and will likely impact, in some way, all those funded through NASCs and EGL funding systems. So, while you might not have any concerns at present, or you may not be receiving disability funding, we urge you to engage in this consultation process to protect your future and that of your loved ones by helping to build a meaningful system of support.

Why is consultation happening?

March 18, 2024, stands out for many in the disability community as a dark day. With enormous budget blow outs, Whaikaha, the Ministry for Disabled Person’s stopped flexible funding with immediate effect. After many had fought long and hard for flexible funding, this swift and drastic change came without warning or consultation.

Reductions in flexible funding have meant many people can no longer access services which enable them to live their lives well, in ways that are meaningful to them, or work with their unique circumstances.

For example, a person with MS can no longer use their Individualised Funding (IF) for physiotherapy. The reason given, is that if a service should be funded by another authority, in this case Te Whatu Ora, it is not eligible under IF. However, IF can be used for is a fitness instructor, who may not be as skilled or knowledgeable in supporting a person with MS.

The strict curtailing of flexible funding has left many questioning how they can spend their allocation in ways that are available and meaningful to them.

For many carers and whānau, significant restrictions on how respite support can be used, has led many to question how they can continue supporting their loved ones at home.

For some, there has been little, if any, change.

However, for many, the effects have been devastating. The Carers NZ current NASCs survey has alerted alarming rates of fear and mental health concerns stemming directly from the disturbance and unknowns from the last year.

Additionally, towards the end of 2024 NASCs were, for the first time, allocated budgets limiting their spending. Since then, we have heard alarming reports that:

• People’s supports have been reduced, reviewed early and allocated for shorter periods. We expect this to continue until more is known regarding budgets for the next 12 months.
• Misinformation is provided on how funding can be used.
• In some areas, no new applications are being approved, only high complex cases.
• There is widespread fear and concern across the disability community.

It is important to note, that not all reviewed packages have been reduced. But, if DSS move towards a more equitable and transparent system, future changes are likely. Your involvement in the consultation is vital to inform the future of the system.

Caring for the carers

It is pleasing to see the support needs for the family, whānau and carers being considered in this consultation, alongside the needs of the disabled person. We know, many carers are burning out and fearful that they will no longer be able to support their loved ones at home.

The Carers Alliance have worked tirelessly for many years to see carers needs recognised, with access to appropriate, fair and consistent respite. Please show your support in the consultation for carers whose needs must be considered in their own right.

What have we learnt?

What has struck us most at Multiple Sclerosis NZ (MSNZ), is:

• The senseless variability and inequity of contracts.
• Concern that many are not receiving funding that they should be entitled to. Only 50,000 people receive disability funding in NZ through Disability Support Services.
• Lack of knowledge. It is clear there is a low level of knowledge about what disability funding is available and what it can be used for, due to unclear, inconsistent and hard to find information.

Our commitment

MSNZ is committed to working with MS regional societies and alliance partners, to ensure the MS Community, including those diagnosed, carers and whānau, is:

• Actively engaged in consultation to ensure the voice and needs of the MS Community is heard.
• Aware of the availability of disability funding for those with conditions, and those providing care.
• Knowledgeable about what funding can be used for.
• Confident to advocate for themselves or have access to advocates who can help fight for appropriate and meaningful funding.

How can you have your say?

Now is the time to be heard. We urge you to engage in this consultation process and help create a service that supports disabled people to live a meaningful and independent life, and that carers are provided the critical supports they desperately need.

There are several ways that you can ensure your voice is heard.

• Attend one of MSD/DSSs in-person or online consultation meetings across the country.
• Make a submission as a video or in writing.
• Complete their online survey.

You can find out more about these options here: https://www.disabilitysupport.govt.nz/consultation

We recommend reading the Discussion Document in advance of attending a meeting or making a response: https://www.disabilitysupport.govt.nz/consultation/discussion-document-to-support-consultation

Share your lived experience with us

MSNZ will be submitting a response to the consultation. While our learnings over the last year will help inform this, we want lived experience to be at the heart of our message.

MSNZ invite you to attend one of two online workshops that we will facilitate. Your feedback will directly inform our submission, bringing together the many voices and needs of the MS Community.

Date: Wednesday 12^th March 2025

Time Option 1: 11 – 12.30pm

Time Option 2: 6 – 7.30pm

Please register your attendance here

The meeting link will be sent 24 hours in advance.

If you cannot attend online, we would love to hear from you either via your Community Advisor, or you can call or email us directly on 0800 67 54 63 or info@msnz.org.nz.