Jonathan Godfrey, President

Editorial Note: This article reflects the President’s personal views. These perspectives may overlap at times and inform and | or be reflected in Blind Citizens NZ’s formal submission. However, the organisation’s submission is a separate document. In brief, it focuses on reasons we do not support the Disability Support Services Bill, and on areas where the Government is in breach | inconsistent with the United Nations Convention on the Rights of Persons with Disabilities. This includes placing the burden of support on families, whānau, carers, and others. Our submission is available on request.

Article begins…

I love Parliament, its processes, and its rules, both formal and moral. I will have Parliament TV going in the background while I supposedly work on other things. I especially enjoy Question Time, and I attend in person when I’m in Wellington and time allows. I write submissions as an individual, and of course, I contribute to submissions made by Blind Citizens NZ. There are some things I don’t like about Parliament. Without exception, those dislikes relate to the conduct of MPs, the way some speak to each other and the trivial and sometimes inane comments they make about topics they clearly do not understand.

I’ve seldom read Hansard, but it has proven useful when I’ve needed to check that I really did hear what I thought I heard, such as comments made by MPs in the first reading of a bill being introduced. It’s that first reading and the subsequent referral debate that tells me so much about the level of engagement MPs have with the subject matter of the bill. One thing I’ve often wondered is how often MPs check the Hansard when they’ve used homonyms in their speeches. Let me be clear, I’ve intentionally misspelt the word “tail” in the familiar phrase used in the title of this column.

So, for this column, I’ve decided to tell you a tale about a tail that wags the dog. There is a tiny bit of speculation, but practically everything I am about to say is a verifiable fact.

Before we get into it all, I’ll just quickly state that I believe disabled people in need should never become a political football.

And, my track record suggests I’ve criticised Governments and Ministers of all flavours for not doing the right thing for disabled people and our families. We do not need one Government to enact legislation that underserves us. Nor do we want another Government to kick disabled people and their families while they’re down, but this is what we have seen. Sustainable processes, especially any legislation that puts core principles into law, must have broad support across political parties of all kinds.

In the case of matters affecting disabled people and our families, it must also have support from disabled people and our families.

OK, let’s get into the tale.

On Monday, 22nd May, I was part of a group of people who were told by the Minister for Disability Issues, Hon. Louise Upston, that a bill was about to be introduced into the House. We were informed what the bill does and its rationale. It was then given its first reading in Parliament on Thursday, 25 May, immediately followed by its referral to Select Committee. There’s nothing sinister about the process as I’ve described it thus far, but the devil is in the detail. First of all, this Bill is a rush job. All processes from the point of introduction have been shortened considerably compared to the normal Parliamentary practice.

I will submit on this bill, and so will Blind Citizens NZ, but I suspect many others will not manage to meet the deadline of 12 June.

The bill seeks to “lay a foundation” for how Disability Support Services will be managed by the Government. This legislation is needed because it establishes the legal basis for funding the provision of the services that disabled people and their families are relying on today.

I will come back to this “foundation” soon, but it is what else the Bill does that I believe is the tail wagging the dog.

In late 2025, the Supreme Court made a decision that found two family members were in fact, employees of the State (Ministry of Social Development, to be specific) when they were paid to provide necessary support to their disabled family members.

The new Bill stops anyone else other than these two people from gaining this recognition through the courts. The response to this employment situation and limiting the ability of the judiciary to have a role in interpreting the legislation is in keeping with the current Government’s track record. My opinion is that the Government’s response is consistent with its broader approach to judicial decisions it disagrees with, and would have happened sooner if there had been a way to do so.

The problem is that without any foundation legislation in place for how Disability Support Services will be managed, there was no existing legislation to amend in order to progress the Government’s response to the Supreme Court decision. I won’t unpick the merits of the court decision or the finer details of employment law. I’d be foolish to try because I’m not a lawyer trained in such matters. I’m a statistician, so I deal in probabilities, data, and evidence.

I’m left asking, “Would we have this Bill and the associated timeframes for its passing through Parliament if the Supreme Court decision were different?” I think not.

So, there’s the tale of the tail. Let’s take a look at the dog.

It is my opinion that the “foundation” aspects of the Bill are a dog. I’ll put it bluntly: In my view, the legislation is inconsistent with the intent and principles of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which the NZ Government ratified in September 2008. It aims to do two things in laying a foundation.

1. It says Government support is a “contribution” towards disabled people living an everyday life.

2. It states quite categorically that responsibility for caring for disabled people is the responsibility of the family first.

This shift of responsibility can be challenged on both legal and moral grounds. First, let’s look at the law of New Zealand.

In September 2008, the Government bound itself (and all future Governments) to progressing the UNCRPD. Article 19 of the UNCRPD is about “living independently”. Article 19 is so important that in 2017, the UN Committee responsible for monitoring implementation of the Convention issued additional guidance in General Comment No. 5, which elaborates on what independent living and community inclusion mean in practice.

Article 19 and General Comment 5 place the disabled person in the position of making decisions, make it clear that the Government is responsible for their support needs, and also that the Government is responsible for helping families. Nowhere in the UNCRPD or any of the General Comments (there are eight in total) does it say a Government can move its responsibilities onto anyone else, let alone families. Nowhere is the responsibility of the State to provide a “contribution”.

It is therefore my opinion that this Bill is contradictory to the UNCRPD. It is inconsistent with the efforts of past Governments (of both kinds) to empower disabled people to live independently, and it demonstrates the worst possible way to create legislation that affects so many disabled people and their families. The Minister herself admitted on Facebook that there was no proper engagement with disabled people or their families. She should know, therefore, that the Government is in breach of Article 4(3) of the UNCRPD.

I suggest to you that there is no excuse for the foundation elements of this Bill failing to meet NZ’s obligations under the UNCRPD. Except that in rushing to respond to the Supreme Court decision, there was not adequate consideration of the legal or moral rationale for the foundational aspects of the proposed new DSS system. Maybe the foundations would be better if there had been more time, and some actual engagement with disabled people and our families through our respective representative organisations.

Over the years, I’ve been accused of not acknowledging the plight of families when advocating for the needs of disabled people.

I’m not about to apologise for my disabled-person-centric approach to advocacy, because that’s my role. I am, however, very aware of the situation faced by many families whose lives are turned upside down when someone in the medical world presents a diagnosis for their loved one. It happened for my parents over fifty years ago, and it is still happening today. Gaining independence was a key mission my father had for me when I was a child.

Not because he wanted me out of the family home, but because he knew blind people could have a decent life if we had the right skills and sufficient opportunities. He had the same hopes and expectations for me as for any of his other children. I’m sure many among us can say the same thing about one or both of our parents.

Even as an adult, I am materially interdependent on my family, but it is a choice I have as an adult, not a state imposition.

I’ve put professional time and energy into the plight of households in which a disabled person is living by working with researchers to show that poverty affects our households at an alarming rate. Households with a disabled person are twice as likely to be in material hardship, and three times as likely to be in severe material hardship, using Government data and Government-defined hardship measures. This analysis used data collected before the recent geopolitical turmoil we are inheriting from offshore.

It was collected when things were supposedly better than before, but now, I suspect it is worse. I further suggest that households with disabled family members are doing it tougher today than households with no disabled family members.

Disabled people do not want to be a burden on their families. Even feeling like a burden devalues us as people because we put ourselves out. We might allow our needs to become secondary to keep the peace, and we might even pull back on developing meaningful relationships because it questions our hard-fought independence and autonomy. I suggest to you that the current Bill therefore devalues disabled people. But it also adds a burden to families who are already our natural supports.

When I meet parents of disabled people, I am often confronted by the decisions they’ve made in the best interests of their disabled loved one. The first and often most obvious one is the reduction of what would otherwise be a two-income household to a household where one person works and the other has to support their disabled younger (or older) family member. This is just not sustainable. If the burden is too great, families will burn out. For example, I’ve had interactions with a taxi driver in recent times who “looks after” his brother all day and then drives taxis in the evening. He’s putting so much time into the care of his loved one that he does not have a life of his own for more than a handful of hours each week.

This burden will take its toll, perhaps not soon, but eventually.

We need to see foundation legislation for the way disabled people are seen by the State to uphold the UNCRPD. We must be seen as equal holders of rights in our communities and in our families. We do not need the State to portray us as a “responsibility for our family”. That’s just sugar coating a life of dependence for disabled people.

I’m going to close by reflecting on the speeches of MPs from the first reading. I felt, and the length of speeches in Hansard confirms this, that the current Government MPs had considerably shorter speeches than the opposition MPs. Government MPs wanted to get the “good legislation” to Select Committee as soon as possible.

Opposition MPs wanted to take stock of what the Bill was actually doing. Even opposition MP speeches, however, did not focus heavily enough, in my opinion, on the needs of disabled people or their families.

Too much time was spent on having a go at the Government for its track record against disabled people and on reducing the rights of people to pursue action through the court system. The question before Parliament is not simply how to respond to a Supreme Court decision. It is how New Zealand understands disability, independence, family responsibility, and the role of the State. Those foundations deserve careful thought, broad consultation, and enduring political support. They are too important to be treated as an afterthought. I suspect that if more MPs in Parliament truly knew what disabled people want and how our families are faring, that maybe, just maybe, we’d get more sustainable legislation that will support us for years to come.