DPA's President Joanne Dacombe joined disability advocates and the community at a public meeting in Wellington organised by Labour MP for Mana, Barbara Edmonds, to discuss the recent changes to disability support funding announced and implemented on 18 March.
Joanne delivered the following speech.
Tēnā koutou kātoa
Kia ora, and a warm welcome to you all here.
Thank you for taking the time to join us. I want to particularly acknowledge and thank the organisers today – it’s a lot of mahi and as a disabled person I know we need our allies and supporters.
We could not do this alone. To my fellow disabled community members thank you for coming – I know the extra effort required to be here. To carers and loved ones I thank you for joining with us in making a stand.
Ko Joanne Dacombe toku ingoa
Kei te noho āhau ki Kāpiti
Ko āhau te tumuaki o DPA
My name is Joanne Dacombe. I live in Kapiti, and I hold many roles within the disability and disabled communities including that of President for the Disabled Persons Assembly, or DPA.
I am Autistic and deaf, I have an Autistic/ADHD adult son and a young Autistic grandson. My community – the Autistic community felt shock, dismay and alarm at the disability funding changes – we needed time to absorb the impact of such significant changes but instead we were thrown by the speed, the arbitrary nature, and the immediacy of the changes, as well as the obvious lack of consultation by policymakers.
It seemed to us that “Nothing about us, without us” went flying out the door.
Make no mistake, the initial funding changes announced on 18th March are in effect cuts – because many simply cannot access the funding despite having the “funds”. It is disabled people and their carers and loved ones paying the price for these cuts and that simply is not fair or equitable.
NZ has a three-tiered system of funding disabled people: ACC, Ministry of Health, and Whaikaha, the Ministry of Disabled people. There are inequities across these systems, not to mention they are a minefield to navigate. Disabled people, family and whanau need a fair and equitable system that is easy to use. Disability Support Services, or DSS, have never been resourced sufficiently to meet the needs of all disabled people – including those who currently do not, but should, receive DSS funding such as those with fetal alcohol syndrome.
Whaikaha the Ministry of Disabled People was set up to implement system transformation of EGL across the motu. The EGL approach is about choice and control, and emphasizes amongst other things: self-determination, mana enhancing and ease of use – all of which flexible funding supported. Nothing about how this was announced or implemented has matched the EGL principles.
Another barrier is that likely due to the speed, volume, and subsequent ongoing changes, the information has not yet been made available in alternate accessible formats such as Braille, NZ Sign Language or Easy Read. Disabled people need this information to be fully accessible to absorb the information in ways they can understand.
The issue around flexible funding is a disability rights issue. For too long disabled people and their loved ones have been at the whim of policy makers, policies, and convoluted systems. It is also an equity issue – many Government agencies, including the Ministry of Social Development, Whaikaha, even the Ministry of Education have imposed on us eligibility criteria that heightens the inequities, is hostile to us, and often serves only the privileged who are able to access GPs, diagnosis, and private assessments. Now Whaikaha have introduced further complexity with their cuts and ‘clarifications’.
DPA’s most recent survey from Friday around the cuts and clarifications show 91% are still affected or unsure and the level of concern has increased.
DPA, as an organization committed to disability rights and systemic advocacy and systemic change, has heard from many disabled people who are deeply concerned about the effect these changes will have on them, as well as their families and whānau.
Our focus will remain on ensuring the rights of disabled people are upheld in the wake of these changes. DPA and disabled people remain deeply concerned about:
- The reduction in their ability to visit family and friends out of town because some disabled people cannot travel without the costs of travel for their support workers also being covered.
- Many disabled people and their whānau fear increased isolation and a loss of self-determination to live their lives the way they choose because of a lack of support.
- Many disabled people rely on support to work, get to jobs or opportunities that may be in other towns, requiring travel. This is now denied to them. Disabled people want to work but often we work in unconventional ways, and we often require support to make this happen. Some of us do consulting, presentations, or are self-employed so we can choose work that fits around our abilities, and our impairments. We can and do want to contribute but that will need our support needs to be met not just in things we committed to prior to 18 March because that denies us future opportunities. We had no way of knowing we needed to commit to these opportunities by 18th March – a random date.
That date has created further inequities because if you signed up to employment, study, or therapies before 18th March then you get to access the funding as before. But if you signed up on March 19th – you have to pay those costs yourself. Just a day’s difference means that people will have access to vastly different levels and conditions of support. This date serves only to further confuse our communities and create further inequities. - Having flexibility allows for personal choice and control and that choice is essential. Flexible options for disabled people matter – Autistic children can’t always be sent off to respite for example. They may need the stability and familiarity of home so parents and siblings may need to go away to get their respite. That’s a cost that many families can’t cover themselves – especially under a cost-of-living crisis.
- For many disabled people and carers, access to occupational therapy, physiotherapy and massage therapy are all needed to maintain a standard of physical wellbeing that cannot be obtained in other ways. I’m a disabled parent – I remember the days of carrying my Autistic son at 40 kilos. It’s hard work! Massages are not simply a luxury as described by the previous Minister of Disability Issues – they are a necessity for some.
- I’ve a friend with cerebral palsy who is a Para cyclist. He was very recently denied his monthly physio and a support rider for when he is cycling on the road. This is a health and safety issue, and he is losing his opportunity to fully participate in society in the way he wants and in theory has funding for.
- While some of the purchasing rules seem to have been dialled back, the rules are far from clear, some seem rather random, and they seem to be changing too often. Some disabled people are still having to fund some of their equipment. This should have been sorted from the beginning. Many of us who have heaps of other things to worry and fight for - still have to fight tooth and nail just to get on a waiting list for equipment, home modifications or even home help. And even on that list we have to wait – wait for approval, wait for the work to be done, and now face anxiety that we may have longer wait times if we are approved at all.
Many disabled people cannot make up the short fall in funding because they were given insufficient notice to plan, they are unemployed, or even underemployed and just don’t have the necessary resources to bridge the gap. Inequities for disabled people exist across health, employment, housing, justice – you name it. And if you are Māori or Pacific People as well then, those inequities are even greater. For disabled people sufficient income and access to support is vital for us to live our good life and participate fully in our communities with dignity and self-respect.
A new priority system is leaving many wheelchair and power chair users worried about access, and accessibility is already a huge issue for them. Many are dependent on their chairs for work, for home life, to get out in the community. Some of these users are also parents and access denied to them is also access denied to their children.
Disability is not a homogenous experience. The individual needs of disabled people are as diverse as disabled people themselves, so flexibility in funding is critical and the key to achieving wellbeing in our lives. A one size fits all, rule-based approach isn’t going to cut it.
I have 3 calls:
- I urge the new Minister to seek out regular and meaningful engagement with disabled people, Disabled People’s Organisations, and the wider disability sector; to work in consultation with all of us for an equitable, sustainable and easy to navigate system for all disabled people.
- I urge Government to reprioritise their budget and take a cross-government approach to support flexible funding – one that resources Whaikaha, the Ministry of Disabled People in a viable and sustainable way, to allow equity for all disabled people and their families and to help our disability rights to be made real.
- Reverse the “pause” and “changes” to our funding until things are sorted out.
In addition to the cuts by Whaikaha the Ministry of Disabled People, disabled people are also deeply concerned by other issues occurring that are likely to impact disabled people.
These include but are not limited to the potential for punitive sanctions by MSD for those disabled people on benefits.
And additionally, jobs being cut from the Ministry of Education that are likely to impact on disabled students.
Disability Rights need to be made real. We have the right to good care and support that fits our needs. We have the right to have full inclusion and participation in society.
We ask that Government respect our human rights to dignity, autonomy, choice, and flexible support by helping to remove barriers and restrictions.
Tēnā koutou, tēnā koutou, tēnā koutou kātoa