One of the side effects since 18 March 2024 (the day flexible funding died) is that disabled people and families have borne the brunt of the Government deciding that each Ministerial deparment must pay their share of support for a disabled person and their family. In the attempt to stabilise the Disability Budget and to improve the ‘postcode lottery‘ of disability supports, they have now introduced an additional barrier to disabled people and families. I am going to call this the Silo Effect.
Let’s talk about what we mean by the postcode lottery first. This refers to how disability supports and services differ based on where you live ie. your postcode. Some areas have access to supports that others don’t. Some areas have more or less services than others. Some areas can use their funding differently to others. Some areas do not have any infrastructure that supports accessibility. The Minister for Disability, Louise Upston, acknowledged the postcode lottery in Parliament under question with the following statement on 24 August 2024:
“It is very clear that the system we have today is unfair, it is inconsistent, and it is a postcode lottery that delivers to disabled people depending on where they live.”1
The postcode lottery is well known by disabled people and families, but here are a few practical examples that those of us in the Disability Community generally talk about:
Postcode Lottery Number 1 – Enabling Good Lives
There are three areas of New Zealand using the Enabling Good Lives (EGL) personal budgets ‘pilot’ scheme. This has been ‘in pilot’ in NZ for around 10 years – at least 3 government terms. Those three areas are Christchurch, Manawatu and the Waikato regions. The rest of the country – which notably includes 3 of the biggest cities – Auckland, Christchurch and Wellington, and accounts for around 1/3 of the population have not had access to EGL personal budgets. Personal budgets give disabled people and their families (agents) one total budget for supports and services such as personal care, household management, respite and equipment. The budget is auditable and has parameters defined by goals and outlines. The EGL personal budget allows some choice and control for disabled people and families (although less since 18 March last year).
Postcode Lottery Number 2 – Respite options
‘Respite’ is taking a break for a few hours, a day, overnight or longer, from your caring responsibilities. Where you live does not change the need for respite. However, access to respite facilities or suitable options are dramatically different around NZ. In Auckland for example, children with physical disabilities can access a respite stay at Wilson Home (which has nursing level care) – the rest of NZ doesn’t provide a similar option.
For those living in towns and rural areas, there are often no respite homes or options available within a 50 km drive. This is why people living in places without respite facilities would often leave their home and have a carer or support worker move in so they could have a break. They can’t do that anymore, because if you are not working full time because you are caring you generally can’t afford to go and stay elsewhere. For many families, having a carer in their home (while they are still there) does not provide ‘respite’ as their child will still want or need the parent.
Postcode Lottery Number 3 – Education
Specialist schools and the therapists they provide are full in some places. Some areas do not even have specialist school options or alternatives. Some mainstream schools in areas without specialist schools are not equipped with resources or teachers that have the skills to work with disabled children.
Mainstream schools are largely not equipped or do not accommodate those with disabilities that are highest needs – some of the children with a disability, may also have a health condition that complicates matters. Often a family is at the mercy of whether the Principal or the Board are willing to create a pathway for a disabled child because there are generally not enough funds to support inclusion.
Postcode Lottery Number 4 – Needs Assesment Service Co-ordinators (NASC’s)
NASC allocations are inconsistent throughout the country in how they allocate their funds. This was highlighted in the Independent Review and we could see that average costs and allocations across New Zealand varied greatly. Since the review we have seen different NASCs ensure they stay within budget by using a variety of means – this has included, not increasing budgets that needed reviewing, reducing supports in some areas even though needs did not change, declining support for some of the lower needs referrals (which previously would have had support), changing who they accept for supports by the way a diagnosis is made (e.g. autism via telehealth) and generally keeping disabled people and their families in a state of fear that their budget will be cut.
That is just a few of the ways we can illustrate the postcode lottery. It was great that the Independent Review confirmed that this phenomena exists and it proved what the disability community have known for a long time – supports will vary depending on where you live. I believe the Disability Community agree that this is not fair.
Unfortunately, the pause in funding to stabilise the Disability Budget has done nothing to improve the postcode lottery. It still exists, and as the 2025 Budget does not show any specifics on Flexible funding and any incentives to address these issues, one has to assume that this is not going to change after the results of the Review come out. I am not feeling optimistic.
But, not only are we not seeing any change in the postcode lottery, we are now subjected to a Silo Effect.
What do I mean by the Silo Effect?
Silos are created when systems and processes work in isolation from each other. In the case of Disability, Social Support, Health and Mental health government departments we see this happen all the time. We have seen “Disability” costs shuffled from the Ministry of Health to Whaikaha and now to the Ministry for Social Development (MSD). We are seeing autism, adhd and FASD, being scrutinised as to which government budget should be paying for these supports. Under the governance of the Minister for Disability, who is also the Minister for Social Development we have seen that the priority is to ‘keep within the budget’ for her department. To make this happen, the guidelines changed so that costs that are not ‘disability’ such as therapy costs have been pushed back to health or costs related to respite for carers are being shuffled out of that budget and deprioritised.
The disabled person is not looked at holistically by government, but as a debt or liability to each government department . No one department wants to own that debt because each department knows that the budget allocation they receive will not be enough to support the growing population of disabled people. We saw this happen with Whaikaha – set up to fail, as there was never enough funding given to be able to manage the supports for the increases in numbers and complexity of the disability community.
What this has meant to the end user – the disabled person and their families is that they now have an additional barrier to access important and much needed supports. That is what I am calling the Silo Effect.
Since 18 March 2023, disabled people and families have been told that their supports must be accessed through correct ‘government departments’ and that we can no longer use Individualised Funding (IF) to pay for therapies, some forms of respite, equipment or items. For a politician this most likely makes sense, as each Ministry receives a budget to provide services to the population they serve. For example:
- Ministry of Health should be responsible for providing healthcare and allied health services e.g. therapy such as speech language therapy, physiotherapy, occupational therapy
- Ministry of Mental Health are responsible for mental health conditions e.g. depression, ADHD, schizophrenia etc. They will provide counselling, support with therapy, medications etc
- Ministry for Social Development should provide support for those in hardship e.g. supported living payment for those with disability and those caring for disabled, Disability Allowances and access to other supports that provide core necessities of life through personal cares and household management
- Ministry of Housing should ensure that enough accessible homes are built and are affordable for disabled people
- Ministry of Education has responsibility of making sure everyone has a fair, inclusive and equitable education – no matter what their disability or challenges are. Ministry of Education are responsible for the hours 9 to 3 on weekdays for all supports.
It seems in this division of services, the Government has completely forgotten who they are serving – the people of this country who include disabled people and their families and carers. They want to divide up a person into neat and tidy budgets to fit their boxes. It is dramatically apparent that they are out of touch with the reality of those living with disability or those caring for them. They perceive we have time to go to 10 different places to find support. They treat us as a burden on the taxpayer. It seems that we are no longer of any value to the community and I feel this in my core like I never have before.
So, now we not only have a postcode lottery but we have the Silo Effect too.
Much of what I have talked about here can be improved if the Government would listen AND take action on what the disability community have been saying for years. For too long, disabled people and families have dealt with multiple agencies, multiple budgets and multiple systems trying to piece together services and support to live a good life. We want services and supports that are easy to access and that we have choice and control over. This is one of the reasons Enabling Good Lives was born.
One of the major benefits of Enabling Good Lives was that a disabled person and/or their family representative could operate one funding budget for their supports, equipment and services. It gave the choice and control back to the person and/or family. The budget might be allocated based on needs (e.g. personal cares, respite, household management, equipment), but the person in charge of that ONE budget would be able to choose and manage how they used it within the scope of disability supports and community living. Personal budgets under EGL were never ‘free to use’ money to spend absolutely anyway you want (e.g. not on alcohol, drugs and gambling), but were auditable funds allocated to the disabled people and their families to support them the best way possible. What is wrong with continuing and expanding EGL personal budgets? This may alleviate a little of the postcode lottery and silo effects.
Unfortunately, the approach for the next New Zealand Disability Strategy (NZDS) which will guide the next 5 years, is only focused on five government chosen priority areas – Health, Justice, Education, Employment and Housing. MSD/DSS already have 5 working groups selected and working on these topics in isolation of each other. While a Ministerial group has been formed to oversee this, I can’t help but feel we are going to see even bigger silos and other areas that are going to be left off the table. While many of the members of the working groups have lived disability experience and are strong advocates for disabled people, I have a very real fear that the voice and needs of family are being overlooked.
The public consultation on the NZDS will begin soon, and while it might feel pointless telling the Ministry again what we feel we have told them so many times before, it has to be done. Each consultation we attend and show up for is strengthening our communities future. I urge all those with the capacity to have a say -to please be vocal, use your voice, share your anger and opinions. We must stand together as disabled people and families to be heard.
If you, like me, are worried about the continuation of silos and postcodes I urge you to get involved when the NZDS public consulation begins. Please comment if you have any thoughts about how silos and postcodes affect you.
Notes:
Yellow Azalea 