Journeying through Holy Week this year, I am reflecting on the pain and distress caused in the disability community, by the sudden announcement of restrictions placed on disability support funding. It feels like standing at the foot of the cross, because it seems like a death of hope as so many people say goodbye to the hope of being supported to have an ordinary life.
In recent times disabled people have seen a shift towards being seen as part of our community, not hidden away in institutions where they are out of sight and out of mind.
Back in 2008 the United Nations Convention on the Rights of Persons with Disabilities formally recognised the Human Rights of Disabled People. But this Government has turned back the clock on putting those rights within reach in Aotearoa New Zealand.
Individualised Funding and “Enabling Good Lives” model allowed people to access disability support in a way that supported their lives in the community. While this system was not perfect, it did allow disabled people and whānau to experience a life that was a bit more ordinary and closer to that taken for granted by most New Zealanders. Disabled people could make choices to tailor funding support to uphold their needs, priorities and interests, and decide where funding support went to enable them to take part in the life they wanted to lead. Just like every other New Zealander can with their money.
With the new limits imposed on disability support funding by the Coalition Government, it feels as though the door has been slammed shut again, putting disabled people back into survival or crisis mode. Disabled people are back to being offered only what is strictly necessary to stay alive, not those things that make life so much more worth living.
These new restrictions have been described as a “pause” but with no time frame for review and unfocused ‘promises’ to consult with the disability community.
It is not all bad. People are still able to access funding for support to live in the community. However, the flexibility in funding for travel out of town, for recreation or respite, for self-care services for support people, parents, whānau and carers is no longer an option.
That means that funding for those key safety valves for caregivers and disabled community members’ wellbeing have been removed, and at the same time, people who will now have to rely more on volunteers cannot use funds to show their gratitude with gifts recognising their help.
These restrictions mean that life goes back to living in survival or crisis mode for many people. It means that disabled people cannot accept employment which requires travel outside local areas, and they cannot take a holiday outside their local area because there is no funding for a support person to travel with them.
At the same time, parents, whānau, support people and carers can no longer get funding for self-care services or travel to enable them to invest in their own wellbeing so that they can continue caring (at times 24/7) for the disabled person.
As an advocate and member of the disability community I feel that this Good Friday I stand at the foot of the cross, watching and waiting, feeling the pain and distress within the disability community.
Please remember the disability community this year as you pray at the foot of the cross, and if you can, please read the articles below and join in signing and sharing the petitions to show your support for the disability community.
Jesus, remember us!
Rev Vicki Terrell MNZM is one of the Anglican Church in Aotearoa, New Zealand and Polynesia’s Disability Ministry Educators.
Read more on the effects of funding limits on people with disabilities
https://www.nzherald.co.nz/nz/disability-funding-pause-causes-confusion-trauma-and-disbelief-colleen-brown/
https://newsroom.co.nz/2024/03/19/disability-ministry-days-away-from-spending-all-its-money/
https://www.rnz.co.nz/news/on-the-inside/512337/why-we-cannot-let-the-disability-support-changes-happen?
Why community based disability support means so much
Petitions to sign and share
Petition of NZ Carers Alliance: Recognise and protect New Zealand’s family, whānau and āiga carers (petitions.parliament.nz)
Petition · Reevaluate the Recent Changes to Whaikaha Purchasing Guidelines for Individualised Funding (Change.org)
Surveys on the impact of disability funding cuts
Carers NZ have a form for carers to share their views:
Your views about Whaikaha's new rules re how disability funding can be used Survey (surveymonkey.com)
Awhi Ngaa Maatua are collecting responses from parents here Whaikaha Announcement (google.com)
Contribute to the State of Caring Survey State of Caring Survey 2024 (surveymonkey.com)
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