So when you hear them
Make claims of progress
Take a good look
And see who isn't there
We need a seat now
At the table
So please invite us
Or don't pretend to care.
Songwriter: Gaelynn Lea.
Today’s newsletter is on Disability Support Services (DSS). It follows last week’s announcement by the Minister for Disability Issues, Louise Upston, that the DSS Taskforce will be extended for a year to “continue its progress in stabilising the disability support system and shaping it for the future.”
Which might sound positive if you’ve been drinking the blue Kool-Aid, but will have sounded anything but to those who remain in limbo following the upheaval in the sector last year when the Government stripped Whaikaha - the Ministry of Disabled People of its ability to administer disability support services and instead move funding to the Ministry of Social Development.
Talking with Blake.
Last week, I heard from Blake Forbes, a disability advocate, and this morning, we had a chat about the current situation and how things have changed under our current government.
Blake is a member of the Labour Party and aspires to be a member of parliament one day. He also has cerebral palsy and relies on carers for his physical needs. You can read more about him here:
Man with cerebal palsy can't get diagnostic scan due to radiology staff shortages
Blake said that three times a day, carers visit him for things like showers, breakfast, and dinner. However, with the shortage of staff across the system, there are periods when they don’t have enough staff, people don’t turn up, and so families have to step in and do these things.
While there was no impact in the recent budget, since the previous government, things have deteriorated significantly in terms of disability services. They weren’t perfect under the last government, he said, but there has been a significant degradation in health and disability care since then.
Comparison with pay equity claims.
Blake had been hopeful of getting relief care to take the pressure off his family. However, like those involved in pay equity claims that the government has recently cancelled, he has been set back multiple years by the government’s actions and has to reapply.
The changes have not only set back those in need of respite care, a vital lifeline, but also those who need residential care. They will now have to reapply and advocate all over again, and we spoke of people who haven’t been able to get into houses due to cutbacks.
Blake mentioned one parent who has passed away from cancer, who thought their child was getting into a home, but had to fight for a place as she was dying, to secure a spot just before she passed away.
For others, though, friends and family are left to pick up the pieces where the state fails to deliver the required services. Blake was concerned that if he re-applied for respite care, things would be more difficult. Like pay equity, the criteria will be a lot tighter. Anecdotally, things are much harder.
What has been happening?
Over a year ago, the government put sector funding on hold at a “keep the lights on” level. Then, it was announced last week that the task force has been extended for at least a year, and concerns have arisen that there may be further extensions.
In the meantime, MSD has taken over the day-to-day responsibility for the sector with claims that the previous system under Whaikaha was not viable.
I also spoke to Nick Ruane, who works at Workbridge and is an advocate for Education For All, a cross-sector advocacy group.
Nick is also the national chair for the Labour Party's Kirk (disability) Sector. He has written a good explainer of what’s been happening, so rather than me reinventing the wheel, if you’d like to understand more about this, check out his article here:
Minister Upston
Blake said it was appalling that both Penny Simmonds and Louise Upston have blamed carers for things not working and claimed that they haven’t made cuts, despite the inescapable fact that people have been unable to access the residential housing or respite services they need.
Blake, who runs the BFG podcast with Paul Barlow, has been pursuing Minister Upston for over a year, but she has refused to appear, saying she appreciates what they’re doing but doesn’t have the time to attend.
I reckon Louise Upston should take the time to listen and speak with Blake and other advocates - it seems to me that, as the minister in charge, that is the absolute least she should be doing.
After my discussion with Blake, I had a chat with
, aka Paul Barlow, Blake’s partner in podcasting, for his take.Paul explained it well, that while we might get pissed off by the government, for someone who is living with disabilities these lengthy delays will cause tremendous anxiety and frustration. It is easy to imagine that would be the case.
He continued saying that Whaikaha had discretionary spending, but the coalition has no intention of going back to that, even though it is what the community want. As Paul said, giving away money is not something that this government will do-unless it’s to landlords.
He finished by saying of those affected, “They know what they had, but they don’t know what is coming.”
So what do people want?
I asked Blake what he would like to see happen.
First and foremost, he wanted to see Enabling Good Lives (EGL) reinstated.
Ideally, recommence Whaikaha, or if not, have a replacement of the same quality standard that the previous system had provided before the cuts in 2024.
Blake spoke of fears that disabled people may end up homeless under the new rules on accommodation, which came in last week, with implications for caregivers or boarders. The Minister has claimed that disabled people won’t be prosecuted for this, but the community is understandably sceptical.
MSD to monitor whether stricter rules for accommodation supplement push people into hardship
Blake lives with his family, so he is fortunate to be in a good space. His parents are relatively young. However, for others who don’t have family support or where parents may no longer be able to care for them, ongoing delays are not an option.
The community and individuals are fearful; they worry about what will happen to their families when they’re gone. What happens to people who can’t get into residential care before they have no other options?
Blake had been close to respite care after a five-year journey; applying for residential care would be a different matter altogether. As he said, it shouldn’t take a terminal illness for families to get emergency action; it should be the same for everyone.
The people who need or want to go into residential care must be able to. Being unable to access respite care is awful for all concerned.
Finally, I had a chat with Nick Ruane, whom I mentioned earlier. He said the DSS review is underway as Whaikaha was about to run out of money, and that has resulted in a freeze on funding to the big disability organisations.
A series of reviews had been conducted to produce results before the budget. However, it was clear that no new money was forthcoming.
Nick said, “There is no money for anything with this government; the operating allowances are so tiny, there is no funding for disability support services at all.”
He and others have low confidence that this will be resolved satisfactorily.
I’m loath to say it, but the only way this will stop is getting rid of this government, and if there is a light at the end of the tunnel, as Nick said, it’s probably a train.
His prediction: the government will extend this out, drag it out for another year, then announce that there is no more money, no flexible funding, and here is the new system —like it or lump it.
Realistically, he said, there are not going to be 40,000 disabled people and their families marching in the street, and so there is little blowback to the government from public pressure.
Ironically, Enabling Good Lives, which is similar in concept to Whanau Ora, was created under National, through Tariana Turia, when John Key was Prime Minister.
There is money, he said, $1.1 billion, that has been shifted from Whaikaha to MSD; the issue is who holds the money and how it is delivered back to those who need it, which should be used to roll out Enabling Good Lives, nationally.
Nick said, at the moment, we have the worst of worlds, where the money has gone back to MSD, which most disabled people have a negative relationship with, in terms of how they’ve been treated.
He would like to see the funding allocated from MSD and distributed to the community in a more Whanau Ora model, where families can take control of their own needs, which they are better placed to understand than the government.
It seems like a no-brainer to me; however, common sense and this coalition remain estranged.
I hate finishing columns saying the only answer is to change the government. Still, I do not see any hope of the coalition treating the disabled community as anything more than charity, and they, along with their friends and family, deserve so much more than that.
Thanks so much to Blake, Paul, and Nick for your time today. It was much appreciated, gentlemen. I’m sure we’ll talk about this or other issues again soon.
Ngā mihi,
Nick.
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Related editions:
Back in March, I wrote about there having been a year of harm inflicted upon disabled people and their whānau:
Last year, about the government moving Disability Services to MSD:
And the tradeoff between Disability Funding and Tax Cuts:
There was also a guest newsletter from Author Catherine Lea, asking who cares if we don’t:
To end today, “I Wait”, by Gaelynn Lea. Have a good one, all you lovely people.
Thanks Nick. A great piece of actual reporting as well as commentary today. This Government wants private charities to step into the void. They want to take social services out of democratic control and subject then to the whims of benefactors. This has been the case since the early 1990's. A constant creep of charitable and volunteer organisation taking on the roles the Government should be doing or at least funding properly. Key offered social housing to The Salvation Army for instance. It's very much cold charity from the conservative viewpoint. They might pitch some money in, but they don't want anything to do with the poor, disabled, or mentally unwell. Then on the every growing NACT far right, they'd be fine with them all just going off and dying in a ditch. I agree, a change of Government is the only solution.
How can anyone with an ounce of empathy not revile this government for their lack of humanity?
Most disabled people cannot participate in hikoi to put the spotlight on the disgusting way they are being treated or ignored.
Apart from making donations to worthy causes, what can those of us who are able-bodied do to help?
It may not be much, but my first step is to share this on my own Facebook page which is open to the public for viewing despite advice that it should be for friends only. However not even all my friends see the political world as I do, so even if it pricks just one person with a conscience into vowing never to support any right wing government ever again, I will feel a little less disheartened.