Yellow Azalea

It’s a month now since we heard that our current government decided to remove flexibility from disability support services. Despite protests, many heartfelt letters written to everyone from the Minister of Disability Issues to local MPs to the Prime Minister to Whaikaha, and widespread media coverage, we have not yet seen any ‘real’ answers on when exactly this ‘pause’ will end, what the ‘unpaused’ guidelines may revert to, or even a date for consultation. It feels like the Minister of Disability Issues, the Minister of Finance and Whaikaha, are taking a less is more approach when it comes to communication to our community.

In my circles, there continues to be angst, despair and frustration with the way our community has been treated. Although the Minister explained that the funding that is available must go to those who it was designed for – the disabled people – these changes have clearly not made disabled people feel prioritised. Losing choice and control over how they spend their funding support, removing the ability to travel outside a region with a support worker, and redesigning how equipment and modifications services are prioritised are all a far stretch from prioritising the disabled people. One can only assume that the intention of the Minister’s comments was to try to further divide disabled people and those who support or care for disabled people by making out carers to be an unnecessary expense to the budget. Or was the motive of the Minister to influence public opinion so that carers are looked upon as a burden to the taxpayer? Neither are very flattering and while she may have partially succeeded in trying to shame carers (the majority of whom are women) for having needs for breaks from a caring role, I think she and this government have miscalculated just how determined and strong the disabled people and their carers as allies could be if we pull together and unite.

For many years, there has been conflict between the needs of disabled people/disabled rights and the needs of family carers. There are many historical reasons for this, a major one being generations of disabled children being sent to live in institutions and being excluded in mainstream society instead of being raised within a family home and with support where needed. It’s a long and complicated journey and today there still remains some divide between what some ‘disabled people’ want and what some of the families of disabled children and adults may want around difficult and big topics like decision making, guardianship, and inclusion in education.

My view is that unless disabled people and family carers can agree to work together around disability rights we will remain pitted against each other for support while the government remains the winner.

At a recent meeting led by Priyanca Radhakrishnan, (Labour Disability Issues spokesperson), and three panelists (Colleen Brown, Rebekah Graham and Nick Ruane), a disabled gentlemen in the audience spoke with some venom that he was tired of hearing about the carers needs – that this issue was about Disabled Persons rights. At first, the Mumma bear in me got very angry at his disregard for family carers – it’s hurtful to be looked upon as the problem, when you are caring around the clock and doing the best for your child. His point though, was that disabled people need to be valued by society for who they are and that this was the issue. The next day, while speaking to a colleague, I was challenged to think about what he said. I can’t say I agree with the way he presented the idea, but there was a very valid point in there. If, in a perfect world, disabled children and disabled people’s support needs were met by a system and policy structure that valued them, then families and carers within families would not be needing breaks or respite at all. Wouldn’t it be great if community/society/government wrapped policy and support around those who needed and/or wanted it so that they could live an equitable life!

Instead, government policy provides a system where a child or adult is given a needs assessment to determine need based on the ‘deficits’ a person may have. While the introduction of the social model and Enabling Good Lives has gone someway towards changing the narrative on needs assessment, it is still widely accepted that in order to get the support one requires, we must degrade the disabled person we are supporting by pointing out the ‘worst’ possible days and scenarios. It’s difficult to turn around and complete a needs assessment based on a vision of what yours or their good life will look like when for years you have learned to talk about functional deficits being the trigger for how support is allocated. In general, disabled people and families have a fear and distrust of the needs assessment process. We share personal and deeply confronting realities to a needs assessor (who often does not have relevant depth of experience) and then have them input our details into a measurement system and then come out with a package that usually is inadequate for our real needs.

The friction that continues to exist between disabled people and carers could be alleviated by policy that values disabled peoples’ rights and gives them the support needed to live their best life. Instead, we have disabled people with support needs underfunded, which then creates pressure on the family to fill the gaps. This phenomenon is what the government refers to as ‘natural support’. Natural support is all of the work of support undertaken by parents, siblings and wider family who love and care for that person. Unfortunately, there is no policy that defines exactly what/how much/when natural support is no longer natural family responsibility and when too much natural support becomes what can be termed as either ‘caregiver burden’ or ‘burnout’.

My lived experience is as a carer. As a parent/carer, when you are changing the nappy of a 20 year old man it no longer feels like a natural support. When you can’t leave your adult child at home by themselves after the age of 14, it no longer feels like natural support. When you must assist with all personal cares including bathing, teeth brushing, feeding on a one on one basis, after a certain age, it is no longer NATURAL SUPPORT. When you can’t go out and get a full-time income and job, because you don’t know when a support worker will call in sick, or your child/adult child will have an appointment, or not be able to leave the house due to anxiety, it is no longer natural support. From the outside of these situations, it is easy to expect that family will take care of their child/adult child and that it is not a problem of ‘the state’ to pay for the supports required. In many cultures this is the way – the wider family will support and love their person and will not want outside assistance. But even within cultures who utilise and rally with family support there are still additional accommodations needed – whether it is equipment, devices, additional medication, transport, it does take more than a village to raise a disabled child. There are many additional associated costs that come to the disabled person (and their family) to contend with, and if they can’t go out and get paid work because they are the natural support, then that eventually leaves the family caught in a poverty trap.

It’s blindingly obvious that a solution to the shortfall of funding would be to find more money for the budget. We all know that to balance the books, we have to either make more money or spend less. The changes to the flexibility have made the funding difficult to use, and in some cases impossible to access. The desired result will be that pre allocated budgets will be unspent and money returned to the government coffers to support other parts of the disability system. While our Minister spoke of Whaikaha being ‘days away from running out of money’, anyone can understand that even with the return of unused funds from Individualised Funding budgets, we are still going to be on the wrong side of the ledger. What is the motive of a government and a Minister in doing this? Do they want Whaikaha to fail? Was this supposed to make Whaikaha look like they are not doing their job? Was this message sent out to diminish the needs of disabled people? To belittle or devalue the role of the unpaid carer? As a way to fracture the disabiity rights movement? Does this government want Whaikaha to fail, because it was introduced under the Labour government? Does the goverment want public opinion to go against carers and disabled people?

It certainly feels like this Government have wanted to send out a message that the costs to support disabled people and their families are extravagant and unnecessary. That disabled people are only worthy of ‘essential services’ that are deemed priority by clinical professionals, and not based on what is the best fit for a person, their culture, wellbeing or environment. As for families and carers looking after family members we should suck it up and carry on with our unpaid work, because we are not contributing anything to the economy, so we should feel grateful for the crumbs that we are given. Families caring for and supporting loved family members may as well have been thrown under a bus in the court of public opinion, as the Minister decided to share ‘inappropriate use of funding’ which is unlikely to have been the norm. It’s clever really, to drop an announcement like this pre-budget, to try and lower expectations, to cause unrest, to clearly try to divide disabled people and carers. If disabled people and carers have to compete to get support funding (which is what this is creating) the goal of unity between the two groups is unlikely.

Yet the real problem is that Government has never allocated the size of budget needed to support the increasing numbers of disabled people living in New Zealand. In New Zealand, there are less than 50,000 people who access the disability support services (DSS) managed by Whaikaha that were recently affected in the cuts. Although there are over 1.1 million New Zealanders who identify as disabled, many of these people do not receive DSS, because they may be assisted through other government appropriations such as health, mental health, old age or ACC.

In recent news, it has been quoted that in the past year, the number of people supported via DSS increased by 3,000 – I don’t have access to the origin of the statistic, but I can share what growth has looked like from 2016 to 2023 in the graph below.

To give an estimate of growth to 2023, I have added 3,000 people to the 2020 statistic. This is an ‘underestimate’ of growth, as there was likely to be growth from 2020-21, 2021-22 as well. Other figures are extracted from the reports listed below. What we can see in this graph is that growth has been steady from 2016 to present day – with an approximate 16% increase from 2016 to 2023. This is the number of people accessing disability support services.

There is also an increase in the number of people with high and very high needs (as defined by Support Package Allocation – SPA) in our community. This means not only are our total numbers growing, but those who require the highest levels of support are growing alongside. It goes without saying that those with VHN would require more financial support.

It’s almost impossible to identify whether the DSS budget has increased in line with these increases in numbers. From 1 July 2022, when Whaikaha began, the funding was passed from the MOH to MSD at the same time that we went from having multiple DHBs with budgets for health and disability to a centralised Health NZ. It’s lost in the system somewhere, whether or not Whaikaha actually got funded appropriately, (it is obvious the answer is that it didn’t), but we have nothing to compare it to, as previously disability spending was buried in Vote Health.

Whaikaha seems to have inherited a hospital pass from the Ministry of Health, the Ministry of Social Development, and the Ministry of Education. They received a directive to ‘steward societal change’, and they were told to be truly transformational in what they could achieve as the first Ministry for Disabled People in the world, but how can you do that if the money doesn’t match the ambition? How can they achieve this if the current Minister in charge is going to make decisions without consultation, without valid evidence, and without being truly aspirational themselves?

Unfortunately, Whaikaha have also failed in the court of disabled people and families opinion. We have received poor communication, messages we don’t want to hear, a lack of transparency and we are left wondering how a Ministry has to make an emergency decision like this when the numbers must have been obvious for more than the previous 3 months. It’s no wonder we feel despair, disheartened and angry as we are left waiting still for any advice as to how long this pause will take, when consultation will happen, and when we will be able to stop the pause.

A month has passed and during that time, disabled people have missed therapy sessions, outings for socialisation, waited while they were drip fed new rules to find out if they could carry on their lives, carers breaks have been cancelled – how long do we have to live in a state of wondering? People have scrambled to find new solutions, support workers, worried over medications they can no longer access, tried to find ways to overcome the changes, but there is still no certainty around what will be next. I know I’ve spent hours trying to advocate, write, network and come up with solutions for families supporting complex disabled people and it feels like there has been little movement.

What has the Minister done in that time? She has sent out generic, impersonal response letters to the community, she has turned off commenting on her Facebook page and she has failed to face up to the community she represents. I am left with very little faith that we have a Minister who understands disability rights, and a grave concern that unless we can rally public support behind our community we will still be in the same position after the budget. Let’s stand together.

This Sunday 21 April at 12 pm to 1.30 pm there will be a protest held in Aotea Square, Auckland. If you believe that Disabled People and their families have the right to a good life, come and join us. I will be there.

Cherie

Reference and Links:

Link to Colleen’s speech at the meeting last Saturday: https://www.linkedin.com/feed/update/urn:li:activity:7184783302908674048

Ministry of Health. 2022. Demographic Report of Disabled People Accessing Manatū Hauora (the Ministry of Health) Disability Support Services. Wellington: Ministry of Health.