Changes to Disability Funding
Thank you so much for your responses to our survey!
We are very grateful that so many of you took the time to share your experiences. To read responses, collated from hundreds of carers who filled out the survey, headed with Carers NZ’s perceptions, feedback and recommendations to government, go here.
Whaikaha – Ministry of Disabled People has announced changes to disability funding that affects many disabled people and family carers.
Carers NZ is working with other not for profits, Whaikaha, and families to understand the changes and will share updates as more information becomes available.
We have been connecting family carers to media wanting to cover this important story, and also collecting feedback at our Facebook page and through our 0800 777 797 helpline, email hotline and survey.
We realise this is a stressful and confusing time for family carers, as the changes impact how respite and support funding can be used in the disability sector. Key points:
- Inclusions. Carer Support, Individualised Funding, Personal Budgets, or IF Respite to pay for activities that are provided by a person or organisation for the benefit of the disabled person. For example, Riding for the Disabled sessions and one to one swimming lessons. Respite programmes which are run within the community. After school, holiday programmes and youth programmes, which directly benefit disabled people. Associated costs to cover expenses for support workers and family carers, including entry fees for recreational activities. For example, Rainbows End, a music festival, the swimming pool or the movies. Note: the disabled person and any other companions or family members are expected to meet their own costs.
- Exclusions. If you have used funding to buy items and/or services as a form of delivering respite, including but not limited to: devices, exercise and recreational equipment, beauty or therapeutic treatments such as massages and pedicures, koha and gifts, accommodation, food and meals out, takeaways, or domestic or international travel, this spending is no longer possible.
- For clarification on these changes, Whaikaha have a Q&A addressing these – take a look at Changes to Purchasing Rules and Specific Purchasing Rules Q&A.
- If you committed to an expense before 18 March, for example, a booking, paying a deposit, or you have paid for but not yet claimed those costs, it is expected that those costs will be reimbursed. Claims for expenses incurred up to 18 March 2024 have to be in by no later than 12 April 2024. If you sought approval or quotes but had not made a binding commitment, those costs will unfortunately now be excluded. Unusual or significant expenditure on now excluded uses of funding incurred after 18 March are now less likely to be approved. All new expenditure must be within the Purchasing Rules in order to be claimed.
- If your funding comes via Health NZ (your DHB) flexible spending with Carer Support is not affected at this stage. We have asked whether the purchasing guidelines for disability will also apply in Health going forward and are waiting for an answer.
- While Whaikaha have said that these changes are a ‘pause’, no timelines have been provided for when any future consultation will occur or when flexibility will be restored.
- There may be other ways you can access services. For example, via Green Prescriptions.
We encourage you to stay up to date with media interviews and articles about the changes. We will also update links about any new information about these changes as it becomes available.
Whaikaha is describing the changes as a ‘pause’ while it assesses flexibility policy and grapples with the realities of growing demand for disability support, within a budget that is not growing to meet this demand. Ourselves, the Carers Alliance, disabled people’s organisations, and many others are engaging with Whaikaha about the sudden policy change – we hope flexibility can return in ways that work for disabled people and families.
Meanwhile, please reach out if you have concerns – talk to your IF Host, your NASC service, and Whaikaha if you have questions relating to your supports. We are also here to help about general issues and to share information to help our community navigate this change.
Information from Whaikaha
Whaikaha has compiled questions and answers to help navigate the Purchasing Rules and Equipment Modification Services (EMS) changes introduced on 18 March 2024.
What changes are being made to Flexible Funding?
The Purchasing Rules apply to Individualised Funding, Enhanced Individualised Funding, Choice in Community Living, Personal Budgets and Carer Support. Changes to what this funding can be used for has specific emphasis on it being for the benefit of the disabled person. In addition, Whaikaha have introduced a prioritisation approach to the way they fund equipment and modification services.
Read the full update from Whaikaha here.
For further information
If you have any further questions, the first place to go is your Host or to your EGL team. They will know your specific situation and are there to advise and coach you. They can assist you to look at your plan and whether the support and funding you are choosing fits within this and the purchasing rules.
A full list of IF Hosts can be found here.
Contact Whaikaha
For any queries or questions: contact@whaikaha.govt.nz
To provide feedback or make a complaint, fill in their form here or email quality@whaikaha.govt.nz
Phone 0800 566 601 Monday, Tuesday, Thursday, Friday 8am – 5pm. Wednesday 9.30am – 5pm
Text 4206
New Zealand Relay Service
New Zealand Relay is a telecommunications service for people who are Deaf, Deaf-blind, experiencing hearing loss or have a speech condition. All New Zealand Relay calls are strictly private so your information is safe and secure. Find the best Relay Service for you here.
Whaikaha on Facebook, LinkedIn and X/Twitter.
In the media
- Changes to disability support funding ‘deprive disabled Kiwis of choices and opportunities’ says Rare Disorders NZ.
- Government goes into damage control but restrictions to disability funding allowances still stand.
- NZ Doctor interviews Autism NZ, a fulltime family carer (name withheld), and the Disability Support Network on the changes to disability funding.
- Peter van Vroonhoven, who has a disabled son, says that Flexible Funding had been a ‘godsend’. Charlotte Roose whose child has autism spectrum disorder says the changes will create more pressure for her family.
- Jessica Barnes, whose son is severely autistic, says the changes hugely limit their support options. Chrissy Aspden, whose son is autistic, says they were going to use the funding for Riding with the Disabled but ‘all of that has been taken away without any notice’.
- Text and audio from interviews with Penny Simmonds, Paula Tesoriero, Dane Dougan, and Chris Hipkins
- Ministry apologies. Interview with CEO Paula Tesoriero and Prudence Walker, Kaihautū Tika Hauātanga, Disability Rights Commissioner.
- Penny Simmonds on changes to funding.
- Penny Simmonds didn’t first consult with the community over policy changes because ‘carers who have been using the funding for their personal care’ were ‘upset about losing that’.
- Interview with disability advocate Tracy Peters.
- Chris Hipkins on disability minister’s claim that carers are using funding for pedicures, overseas trips.
- Interview with Autism New Zealand chief executive Dane Dougan.
- Wallace Chapman, Kirsty Cameron and Dean Hall discuss disability funding changes.
- Interview with Ian Perry, whose son has significant disabilities.
- Interview with Dr Rebekah Graham, National Executive Officer, Parents of Vision Impaired.
- Interview with Penny Simmonds and Cerebral Palsy Society of New Zealand spokesperson Amy Hogan.
- Emily Writes: The real impact of funding changes to respite care. Includes feedback from hundreds of family carers.
Stay informed day to day through disability networks and at our Facebook page.
Support Carers NZ by adding your voice
Carers NZ advocates on behalf of carers. We believe carers are burning out and in crisis and lack a clear place in government representation. We believe they deserve meaningful recognition, an equitable and adequately resourced respite system, investment in their physical and mental wellbeing, and financial security. In our view, choosing to care should not be a choice to live in poverty. Sign our Petition!
