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A $100 is cut in half with scissors. A wheelchair logo is in the background.

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A $100 is cut in half with scissors. A wheelchair logo is in the background.

Wait, what's happening? Here’s what we know about changes to disability funding

This week, disabled people and their whānau were told that funding flexibility was being paused because the ministry is running out of money.

  • What is happening? What do we know?

    This week, Whaikaha - the Ministry of Disabled People announced changes to the purchasing rules around how disabled people can use their support funding. 

    Some things that we may have used our funding for in the past are no longer allowed. 

    It’s important to note that the total support budgets of disabled people and whānau are not being reduced

    In summary, the purchasing rules (published on March 18) state we can no longer use our funding to purchase:

    • Expenses that provide respite, e.g. consumer electronics, sporting or recreation goods that may reduce the need to take a break
    • “Self-care services” for carers and whānau, e.g. massages and pedicures. Disabled people may still be able to use their funding to purchase these things if they are a “necessary part of supporting [us]”.
    • Gifts for volunteers providing support
    • Overseas and domestic travel-related costs for disabled people, whānau and carers

    We can still use our funding for:

    • Employing support workers, including whānau
    • Expenses that are a necessary part of our support
    • Items that support [us] to carry out tasks more independently
    • Ready-made food where it offsets the cost of funded support
  • What about my upcoming expenses and purchases? 

    Even though the rule changes are immediate, Whaikaha is allowing a “grace period” for any final expenses until 29 March. Those expenses must be claimed by 12 April

  • Why is this happening?

    The Minister for Disability Issues Penny Simmonds said Whaikaha is running out of money, and needs to make tough choices about how to spend their budget.

  • Why does this matter? 

    These new rules will have a significant impact on disabled people and their whānau. For years, disabled people and their whānau have used flexible disability funding to pay for items that qualify as disability support, such as ramps, communication devices, physio sessions and grocery delivery. We have also been able to use flexible funding to pay support workers to accompany us when travelling for work or recreation. 

    According to the new guidelines issued this week, many of these types of purchases are no longer allowed.

    Since its inception, Whaikaha have been strongly committed to three pou: Te Tiriti o Waitangi, The United Nations Convention on the Rights of People with Disabilities and EGL principles. The changes announced this week, and the lack of consultation and partnership, are a surprising departure from their previous work, which included a strong focus on partnership

    While Whaikaha have said that these changes to flexibility are a “pause”, no timelines have been provided for when any future consultation will occur or when flexibility will be restored. In the meantime, disabled people, whānau and carers are left in limbo while the rules continue to be clarified on a daily basis through the media. 

  • What are officials saying? 

    Paula Tesoriero, CEO Whaikaha: “We had to take in some quite urgent circumstances where the budget was no longer able to provide for some of the core essential things. And so what we've had to do is ensure that disabled people receive the support they need, and we've had to prioritise that spending to things like ensuring that people can have access to wheelchairs and core essentials.” [Audio source]

    “Disabled people and carers are still able to rely on friends and family and choose who their carer is, still able to go out in the community, participate in community activities with their support worker… that's [still] funded.” [Audio source]

    “Flexibility post-Covid has increased the [support] budget from 220 million to 550 million. So in two years it's actually doubled, and so when we're trying to provide for flexibility within a fixed budget what we now need to do is get the settings right for the longer term and that's what we're laser focused on working with our community to do.” [Audio source]

    Disability Issues Minister, Penny Simmonds, has questioned how the money has been spent and suggested some families were using their funding on “massages, overseas travel and pedicures”. [Source]

    She said the changes were necessary because there used to be no flexibility around individualised funding but during the Covid-19 pandemic flexibility was relaxed.

    "Now we're saying we need to recalibrate that and bring it back so there are better guidelines, better criteria, better regulations." [Source]

    “The fund has more than doubled in its usage and more than $104 million has been spent on purchasing things. And so we just have to get those guidelines right.” [Audio source]

    “I appreciate that the consultation was not as wide as it should have been before implementing the changes. We are improving processes around communication." 

    "What is important is that the needs of disabled people will continue to be the highest priority for this Coalition Government.” [Source]

    “It is a policy situation that was set up by the previous government that has seen more than double the spend occurring in the flexible individualised funding. That's put pressure on, obviously, the amount of money that was there to be able to be used and so now we have to look at how we prioritise that.” 

    “It was days that they were getting very close to. They need to be able to make that decision now. It’s a ministry that’s very close to the end of their [funding] appropriation.” 

    “This fund has blown out and they have to manage it within the fund that’s there.” [Source] 

  • What are disabled people saying? 

    Amy Hogan, Cerebral Palsy Society of New Zealand spokesperson: “These changes have been pushed through with zero consultation and zero explanation about what they mean. It’s not a carefully thought-out exercise for a sector that needs careful consideration.

    It is going to make it harder to access everything and harder to justify the ‘necessity’ of the expense considering the vagueness of the inclusion and exclusion language.

    It’s going to affect my work life, my social life, my family life and I’m not even going to be the ‘worst’ affected.” [Source]

    Joshua Perry: "Please, please reverse these changes, because it’s going to affect disabled people like me for years to come.” - [Audio source]

    Prudence Walker, Te Kaihautū Tika Hauātanga (Disability Rights Commissioner): “These decisions seems to be inconsistent with the right for disabled people to be involved in decisions that affect us and also not in line with the principles of EGL and Whaikaha's commitment to working in partnership with tangata whaikaha Māori, disabled people and whānau.” [Audio source]

    Disabled Person’s Assembly: “The way that these changes were communicated to our community with no consultation or warning was appalling and has caused alarm and distress to many, fearful of what these changes may mean and scrambling for information.

    The announcement set out boundaries on what support funding can be used for and the way this is worded means it will impact on the ability of many disabled people and support providers to apply flexibility in seeking solutions to individual situations.

    At DPA, we are concerned that a prescriptive, rule-based approach will not work – it takes away choice and control and flexibility of funding – which is a direct contradiction of the principles of Enabling Good Lives.” [Source]

  • What can you do?

    The current political climate and the way this information is being relayed to our communities – combined with the suddenness of it coming into effect – has understandably been a trigger for many different emotions and stress, particularly for carers and parents of disabled children. 

    As a disabled person it can feel overwhelming to even know where to start processing what this means for you, let alone try to act on the situation in a meaningful way that can help create change for everyone. But if you want some ideas, we’ve included some here.

  • Prioritise your own wellbeing

    It can be helpful to first take a break from the constant feed of social media and news around this situation to check in with yourself and your wellbeing. Are you okay? Do you have a support network of friends, whānau and/or support worker/s around you that you can talk to? Do you have a good contact person with the support provider you may use that you could reach out to talk things through with? 

    If you’re feeling a bit overwhelmed or alone, you’re welcome to reach out to us via kiaora@thedlist.co.nz or direct message on our Instagram. We do encourage you to reach out to your personal contacts first, as they will be most informed about your personal situation.

    Stay informed and ask questions 

    A good place to start is by writing down all the questions you have. So if you don’t understand something, or you’re not sure, note it down, and contact someone you trust for answers. That could be an organisation like your service provider, IF host, NASC or community organisation. It could also be a group chat of friends or community members.

    While short summaries from the media and others are helpful to break down more complex changes, we recommend you always go direct to the source and read through the official documents to inform your own opinion first. You can find those here.

    If none of that is making much sense to you, and you’re concerned that you may be affected by these changes, we’d then recommend you reach out to your current funding host and/or service provider/s for further information that is specific to your situation.

    You have a right to request they explain what these changes will mean for you in a way that is accessible and you can understand. Please remember to be kind when doing this, as a lot of the kaimahi are in a similar space as ourselves, where they are still seeking clarity on what this means for our communities.

    It can also be helpful to reach out to other disabled people you know who may be in a similar situation to get their thoughts around things. However, while we encourage collective discussion (even if it's rage!) you should always confirm whether what people are saying is an opinion versus a fact i.e. Something that they can back up with a reputable source. 

    If these discussions start feeling difficult or toxic, hold onto your spoons and disengage to take care of you.

    Sign the petition

    Sam Whitford, a parent of an autistic child, has created a petition on change.org “to reevaluate the recent changes to Whaikaha Purchasing Guidelines for Individualised Funding” which at the time of publishing this article has over 18,000 signatures.

    Advocate for change

    The Disabled Person’s Assembly (DPA) wants to know how these changes will affect you. They will be talking with Whaikaha, and want to advocate on behalf of people affected. If you’d like to share your thoughts and experiences, you can do so by filling out their survey.

    Contact your elected representatives

    Beth Awatere has written about why accessible protesting is important in an article for The D*List titled “Accessible Protesting”. They also provided a simple template which you can use in your correspondence, which for convenience's sake we have included below:

    • Dear Minister of Parliament (Use their name here)
    • Introduce yourself and why the issue is important to you
    • Questions you have for the government representative about the issue
    • What actions you would like to see taken
    • Thank them for their time
    • Sign off in a way that feels meaningful to you

    You can find out who your local MP is from here.

    Other ministers to also reach out to:

    • Hon. Penny Simonds (Minister for Disability Issues) [Email] [Facebook]
    • Rt Hon. Christopher Luxon (Prime Minister) [Email] [Facebook]
    • Hon. David Seymour (Deputy Prime Minister) [Email] [Facebook]
    • Hon. Winston Peters (Deputy Prime Minister) [Email] [Facebook

    If sending a handwritten letter to an individual minister address the envelope as:

    First name Last name (of the minister you’re contacting)
    Freepost Parliament
    Private Bag 18 888
    Parliament Buildings
    Wellington 6160

    Keep updated

    There is a myriad of information and opinions being shared so it is best to try to get your information directly from the source. In this case that would be Whaikaha. Whaikaha is constantly updating their website and social media channels as new information is released:

    * Timeline updated on Monday 25 March