"We are battle weary, but we are not defeated"
This is our war cry ✊🏽
By: Rebekah Corlett MNZM
Reasonable Accommodations with Rebekah: May 02, 2024
This is a copy of my speech made on Sunday 28 April, 2024 at a public meeting to discuss the recent changes to Disability funding, hosted by Labour NZ and local MP for Mana, Barbara Edmonds. Other speakers included Joanne Dacombe from Disabled Persons Assembly (DPA), Occupational Therapist Jamie Blank and Tim Keats from Public Service Association (PSA). Also speaking were Labour leader Chris Hipkins and Disability Issues spokesperson Priyanca Radhakrishnan.
INTRODUCTION
· I’m speaking today from my experience as a parent and primary caregiver. My husband is at home today with our two children, ironically because we don’t have a carer to call on.
· Our eldest child Sophia is 15, autistic, non-speaking, she uses assistive technology/AAC to communicate.
· We initially used carer support, and a few years ago we switched to Individualised Funding after being told it was a more flexible support for Sophia as she got older. For many reasons, employing a care worker is not an option for us. I won’t stand here and justify those reasons, because I feel like I’ve had to justify myself as a carer far too much lately, thanks to Penny Simmonds.
· When the flexible guidelines were applied during covid we were able to use her funding to extend her interests in music, gardening, at home and her love of nature and animals out in the community, with a mixture of natural and additional supports - creating a good and fulfilling life for her and access a bit of respite for me as well. Nothing extravagant mind you - no overseas holidays, no lottos, no ciggies, but the occasional contribution to a night away when I could get a short but effective full body-mind reset.
· As of the 18th of March 2024 we were no longer able to access funding for any of the things that made Sophia’s life fuller, I can’t access any respite to support my own levels of wellbeing either. The revised guidelines no longer mentions carers or their respite needs
· Sophia’s talker is her voice. Where she goes, her talker goes. Thanks to the changes to Equipment Maintenance Services (EMS) - if her talker is ever damaged we might not be able to get funding to have it fixed or replaced, which is cruel, terrifying and in breach of a persons human right to communication, enshrined in the UNCRPD – a founding document of Whaikaha.
· Minister of Disability Issues Penny Simmonds said at the time that these were not funding cuts, just a revision of purchasing guidelines ...but when you make the criteria for funding so impossibly hard to meet that it remains untouched, week after week, it is US as carers are forced to make the cuts ourselves.
· The first week after the announcement, I was constantly in tears worrying how we were ever going to make it work. I had to make a list of all her funded supports and work out which ones we can keep, paid from our own pocket. Let me tell you, it was a very short list by the end of it. We are a one income household, the Child Disability Allowance doesn’t cover much in a cost of living crisis. We have also felt the impact of the end to free prescriptions & public transport.
WHY ARE WE HERE?
· We as parents and carers can’t strike , we can’t just walk off the job in protest. We have no Union to champion our cause. This is not simply a 9-5 job - this is our life 24/7
· We love our children, we sacrifice our own health and wellbeing for theirs, without hesitation. For years we have filled the gaps in unsupportive health and education system, stepping in as educators and therapists to enable our children to thrive. Whatever it takes. But do not mistake our kindness for weakness!
· We are here because were ALL betrayed by our (recently demoted) Minister of Disability issues Penny Simmonds – she threw us all under the bus the first chance she got. She is a parent and carer herself, yet still used her platform to say carers misused disability funding, but is yet to provide any proof, by OIA request or otherwise!
· She claimed carers had used funding to buy cigarettes, alcohol and lotto tickets. Lady, the only lottery we play is the ‘postcode lottery.’ And we are not winning!
HERE’S WHAT WE WANT PEOPLE TO KNOW
· WE did not blow Whaikaha budgets. We had pre-approved annual budgets that are monitored, and purchases are gatekept so tightly by our service providers, we have to justify every fidget spinner, every solitary morsel of support. If someone managed to claim successfully for a bottle of Lindauer, a packet of winfield reds and a Triple Dip – thats on their service provider, not us. Why vilify and punish all of us, based on an anomaly.
· Self Care and Respite are valid as expense claims. Carers are hard working and worthy of support.
· A massage could help a carer who has a physically demanding role, an airfare could be to connect with family who can provide care. And an occasional spa treatment or night away can do wonders for a stressed parent or carer, and much more cost effective than the cost to the health system when they experience burn out, or worse in the future. Minister Simmonds gave no context to her examples of manicures and haircuts which was unfair on carers, who live a far from lavish, pampered lifestyle.
We now have two ‘opportunities’ for funded respite now
1. Become an employer (complete with the responsibility of recruitment, meeting tax requirements, kiwisaver etc) of a carer OR
2. Send our child to a respite care facility, or a day program (if you have a local, inclusive and accessible option) on their own to be supported by strangers
· These are not viable and/or safe options for many families.
· It is a step in the wrong direction, back to the days of institutionalisation and the charity/medical models of disability. Back in the days when sending disabled loved ones away from home, their whanau, their turangawaewae was the norm. That should never ever be ‘the norm’ ever again.
· Have we learnt nothing from the royal inquiry on abuse in state care?
OUR CALL TO ACTION
· Penny Simmonds was the minister at the time of this shambles needs to apologise to carers – not the new minister, she did not cause the harm. Do the right thing and apologise to your community
· Disabled people and their whanau/carers need to be involved in decisions impacting us from now on. Nothing about us without us!
· This is our time to raise our voices. Please find a platform you are comfortable with – letter writing, social media content, face-to-face conversation with your local MP, whatever works best for you. Bring your whole self and your voice, whatever form it comes in and share your experiences and feelings with no fear.
· WE demand flexible and individualised be the standard issue for disability funding, to reflect the fact that every person and their need for support is different, and that carers deserve access to funding for their own self care/respite needs.
BECAUSE...
· WE all deserve a good life. A full and happy life.
· But we are tired, and we can’t do this alone.
· We need cross party support, because this coalition government are clearly not interested in working with us, or listening to us. They are solely focused on financial gains, with no care for the collateral damage along the way. We are battle fatigued, but we are not defeated.
· This is not the end. This is a beginning. Think about all the barriers you have faced and overcome in your lives. These penpushers and politicians (no offence) have nothing on your lived experience, and our shared strength is so strong they should be quaking in their boots! Carry that with you when you leave this hall today. You can move mountains, and you have your community behind you every step of the way.
Ake Ake Ake! As long as it takes
Last Updated 05/05/2024
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