Crisis Mode: NZ’s Poorly Planned Disability Transformation

Little over a year since the newest big pilot launched, one of New Zealand’s biggest players released a report stating that the disability support sector has entered full crisis mode.

NZDSN certainly pulled no punches in its latest report, stating that “the disability sector is in crisis at every level” in an explosive overview that estimated $574m shortfall in funding.

Whether you agree with the report or not, you’d be a poor fool to say that it simply reflects the financial interests of providers and attempts to scaremonger the Government.

The proof of the effects this funding model is having on real disabled people couldn’t be clearer.

Such reading makes a mockery of the “nobody left behind” and “choice, control, flexible” values that have underpinned the most ambitious change to disability support system since the closing of the large institutions. If anything, the uncertainty and stress on the system matches (if not beats) that of what was experienced in the nineties and early 2000s.

NZDSN estimates 15,000 people within the regions where new support pilots are taking place (Waikato, Christchurch and the MidCentral) have missed out on getting some kind of disability support.

15,000 people, more than a handful (making somewhere around 25% extra unmet need) in an approach where $24m of taxpayer money was spent on development.

But what exactly was designed and how well was it actually developed in the first place?

That’s the question that will be asked by the appropriate parties, and as much as it seems that they will be the ones tasked with easing the uncertainty ahead, they were let down by some pretty shoddy advice and a clear lack of awareness from those disability community representatives that themselves forgot about or didn’t understand the reality that was burning below the surface.

Chaotic Feeling Underpins Life In New Disability Pilot

Words like “try, learn and adjust” that came out of the MidCentral project were as clear a sign as any that there were few answers on what to expect, but more importantly, they provided absolutely zero clue on how to address the issues that were coming.

Just over a year since launching Mana Whaikaha, the feeling on the ground in the MidCentral has been described as one of chaos after long periods of time with deep-rooted uncertainty.

Such sentiments are echoed in previous and ongoing work in other parts of the country. The Real Michael Pulman understands that connectors in the Waikato have been told that their jobs are only certain until June 2020, with further announcements not expected to be made until earlier in the year.

In his interview with RNZ on Monday, NZDSN boss Dr Garth Bennie was exactly right when he said that the pilots were originally about testing the designs, offering disabled people a choice of their supports rather than taking from a set menu.

One must also ask how cutting runaway costs could possibly have ever been managed with the growing demand not being a prospect, but a certainty. To even attempt to answer that, there needs to be an honest admission about what was going on behind the scenes.

It was never simply about “Enabling Good Lives” for disabled people and their families. It was about attempting to adhere to a set list of principles and do it with very little to no extra funding with tangible impact in the long term.

What’s been a constant reminder in 2019 is that disability support services are flying blind into the future. Perhaps this was always the case, perhaps this is identifiable in the wider health and social service sectors, but it’s dangerous to assume that small parts of the country can successfully show enough result to transform a system nationwide.

And yet, that’s the very assumption that’s come from all this, whatever is happening in these new spaces will soon be the status quo for all. It worked well for persons X, Y and Z so let’s build on that and repeat the formula.

There is merit in arguing directly against that. The poorest outcomes in the new pilots should be the examples used when decisions are made about what to do next.

That’s not all positive and rosy though is it? Now more than ever there seems to be much logic in stopping, having a big rethink and getting it right if the basic human rights of many disabled people are to be met.

All that starts with an admission that what we’re doing currently just isn’t working.

NZDSN REPORT: https://www.nzdsn.org.nz/wp-content/uploads/2019/11/NZDSN-Sector-Briefing-Final-14-11-2019.pdf

Ministry of Health Offers Little Assurance To Disabled Community

The Ministry of Health may have fronted, but the detail on what’s next for Disability Support Services was light and uncommitted during the latest round of conversation.

During a live stream hosted last Thursday, the Ministry of Health shared its learnings and attempted to get close to something of a vision for the future after it held public events around New Zealand that engaged with the disability community. Continue reading Ministry of Health Offers Little Assurance To Disabled Community

System Transformation workshops off to underwhelming start

Two workshops down and not a lot to show for the co-design group behind transforming the disability support system in New Zealand.

Throughout April, the first of several workshops were held in Wellington that saw a small group of disabled people, advocates, and service providers come together to work with Government.

The purpose is to design a new system for supporting disabled people; but about all that’s been achieved so far is discussion on Enabling Good Lives principles and clarifying the meaning of Mainstream First.

Workshops continue in Wellington this week, but the group have already convinced project manager Sacha O’Dea to schedule additional meetings in a bid to get the process complete in time for cabinet’s reading in June. More work will need to be done in between meetings as well.

There was a lack of clarity of the actual scope behind transforming the system, and that was a major cause of anxiety in the first meeting. Finer details were cleared up and the official line from O’Dea to the group is that the scope of transformation is for all specialist disability support services in New Zealand. That adds up to around 33,000 people in total – with no word on the restrictions regarding eligibility criteria.

The second workshop saw clarification over the term ‘Mainstream First’ – a big buzzword behind new approaches to services that enable more choice and control. Here is the decided meaning:

“Everybody experiences full participation and inclusion within their community (people, places, assets, infrastructure and supports) as of right and can choose funded supports to enhance and facilitate this.”

The group is keen on getting into the actual design process – something that hasn’t really happened throughout the first month of the project.

Hard Work & Real Action Needs To Begin Now

There is no doubt that the co-design group faces an immense task over the next eight weeks.

It goes without saying that whatever the future looks like for services, and more importantly the process, a key ingredient needs to be simplicity. One assessment, one host, and a greater level of flexibility to go along with the person as their life journey continues. Don’t do things to, for, or on behalf of the person with a disability, do it with them.

This isn’t a case of creating a “brave new world”, it’s about creating a fair system that does include a much greater level of financial investment. The money side matters just as much as the promise of a better system, one cannot be a given without the other.

While some great minds are present on this group, just how much can be achieved remains the huge question.

In an election year, time is of the absolute essence, and it’s debatable that Minister Nicky Wagner will leave anything to chance when it comes to this so called “system transformation”. Re inventing the wheel isn’t going to happen by June.

There is a risk that this co design group could be just another example of great talk, with positive enthusiasm and quiet cynicism, followed by mediocre action.

 

Pay Equity Deal could leave some clients in limbo

Support workers will rejoice today as the long-fought pay equity deal gets the sign off.

55,000 workers will get a pay rise of up to 43%, across Government sectors including Aged Residential Care, Home Support, and Disability Services. It is a huge win for a part of New Zealand’s employment that has gone long underpaid for far too long.

But who picks up the tab? And, what does this all look like after the election later this year?

As it pertains to disability support services; it is a sector made up primarily of women. There are men, too, who work as carers and provide home help but they are mostly overshadowed by their female counterparts. Those counterparts, rightly so, are very loud and have historically tried to “fight the system”.

Underpinning this long battle is the reality that women are not paid on an equal level to men.

Poor coordination, underfunded providers, and a lack of quality care workers in the sector are not addressed in today’s announcement. An extra $500 million per year – that is the cost of this victory. A fair and well deserved victory, but a very expensive one nonetheless. Productivity and output are not measured in the decision either.

Newstalk ZB host Mike Hosking was very right when he said that once one group of people get a rise in pay, everyone then sticks their hand up wanting the same. He was also right when he eluded to the fact that workers won’t be being required to put in any extra hours or have additional tasks added to their regular duties.

Ah – but that statement forgets that there are already many support workers that go above and beyond the people they support. They work extra hours, often for little to no compensation.

While this news comes as a big win for the care sector, it will come at a major cost, but not only to who you’d think. Disabled people and their families will feel the impact of this too, and their current allocation of funding won’t manage the tsunami of pay increase demands that will come as a result. The funding must increase, not just the pay rate of support workers.

There is a tremendous risk here – and it could ultimately backfire on those most needing the support who have such little flexibility with funding as it is.

HealthCare NZ to pick up 850 families wanting Home Support

IHC New Zealand boss Ralph Jones has confirmed that HealthCare NZ and Spectrum Care are likely to take over provision of home support and facility based respite for its clients.

IDEA Services has been in the news for dropping the two services, and even more recently for cutting its Autism support, but the impending signature with two of New Zealand’s most prominent support providers is encouraging.

850 families receive home support under IDEA Services, and the provider says it’s confident that HealthCare NZ can take on each of those.

“When we signalled an intention to move out of these services, a great deal of work was done to ensure continuity”, Ralph Jones said. “We know that families want certainty and we are pleased to be able to share the next step as part of our commitment to ensure uninterrupted services”, Jones added

Three of the respite bases will be managed by HealthCare NZ, and Spectrum Care are wanting to manage two in the Wellington region.

Minister for Disability Issues lashes out in Parliament

nicky-wagner-mp-for-christchurch-central
Minister Wagner lashed out in Parliament this afternoon. Photo: TheWorkingBlog

In a remarkable afternoon in Parliament; the Minister for Disability Issues took aim at IDEA Services and labelled the provider irresponsible.

Opposition Labour MP Poto Williams has accused Nicky Wagner of reacting in an appalling manner when asked about cuts to Autism Spectrum Disorder (ASD) support announced by IDEA Services on Tuesday.

In a rant of sorts, Wagner accused IDEA Services of doing a U-turn on discussions about re-signing the contract which would have seen the ASD support continue. Wagner also claims that IDEA refused to enter into transitional services before a new provider was found.

“After previously indicating they would renew contracts, they gave no notice their clients. They also refused to agree to a temporary three month contract”, Wagner said. “I say that IDEA Services is being totally irresponsible. We all know change is difficult, especially for this cohort of clients where routine and security is so important”, Wagner added.

In the aftermath of Wagner’s comments, the Ministry of Health issued a statement. Toni Atkinson, the senior media advisor for the Ministry, reaffirmed the Government’s stance that increased levels of funding has been injected into IDEA Services.

“IDEA have been funded $2.3million per annum to deliver these ASD services. They, like other providers, need to configure their service within the available funding”, Atkinson said.

Despite a long relationship between IDEA Services and the Ministry; it appears that the relationship could now be over.

“We acknowledge IDEA’s long standing commitment to the provision of Autism Spectrum Disorder (ASD) services through New Zealand. We are disappointed that the relationship with families and the Ministry is to end in this way”, Atkinson said.

Reaction on social media has been of shock and disappointment, particularly at Wagner for her comments. One woman said the Minister was in “la la land” if she couldn’t work out how underfunded the disability sector is.

The Ministry say that other providers have already showed willingness to pick up the ASD contracts. No firm date has been given for new services and an announcement won’t be made until a new provider is confirmed.

Atkinson says that the wait will continue for the high amount of people on waiting lists.

“People on wait lists will stay on the waiting list until new services are in place. The Ministry will ask IDEA to provide a copy of the current waiting list so that these people can be prioritised once alternative services are in place.”

The Ministry estimates that currently 446 active clients are involved in services and 728 families across New Zealand are on waiting lists.

Ministry of Health make further comment on ASD Support reductions

A senior media advisor at the Ministry of Health has provided further information on the recent cuts to services supporting people in the ASD community.

According to the Ministry; an email sent by IDEA Services last week was confirmation that the provider would not be renewing the ASD contracts.

No one has said that IDEA Services won’t continue to provide any support for the ASD community, in this blog or otherwise. IHC New Zealand boss Ralph Jones said that the organisation will continue to advocate on behalf of all people with intellectual disabilities.

But the fact remains, IDEA Services won’t be running these popular services and the hundreds of families on waiting lists will have to stay in limbo.

For a long time now, people have struggled to take what the Government says regarding funding for disability support at face value. This latest example in terms of the apparent reduction in funding for ASD support services is the latest example.

After the email exchange between IDEA Services and the Ministry, a letter was sent out to people receiving support for ASD services. In that letter, IDEA Services gave this official statement:

“Unfortunately with the underfunding of over $500,000 in the 2016/2017 year and no offer of an increase for the coming year we cannot continue to provide the service”, IDEA Specialist Services General Manager said.

The Minister for Disability issues has said that funding isn’t being reduced, for IDEA Services or any other organisation. This is in direct contrast  to what was claimed in the letter.

Costs for all organisations are on the rise and some have speculated that the $500,000 underfund for IDEA Services isn’t specific to ASD contracts. What IDEA Services are saying is that there has been insufficient funding to continue ASD support services moving forward.

Some members of the ASD community say that IDEA Services didn’t renew the contract with the Ministry of Health due to being underfunded as costs for services and programmes continue to rise. They also say that this was not a new problem either.

The mainstream media are currently working on this story.

Minister denies claims of reduction in funding for IDEA Services

The Ministry of Health and the Minister for Disability Issues have both denied a reduction in funding for IDEA Services led to cuts of support programmes for people with Autism.

Tony Atkinson, Disability Support Services Group Manager, rejected claims of funding reductions leading to IDEA Services pulling out of providing three programmes that support and educate people in the ASD community.

“There has been no reduction or cut in funding to IDEA Services”, Atkinson said.

The Ministry and IDEA Services want to limit disruption and the gaps between the end of one service and the beginning of other ones. Atkinson says that alternative arrangements for affected services are being worked through.

Just what those other services will be, and how accommodating they are to the thousands of people in the ASD community remains to be seen.

Aside from the thousands due to be affected by the cuts announced via a letter distributed from IDEA Services on Tuesday, many more are still on waiting lists as well. In the letter, IDEA pointed to an underfunding of $500,000 in the 2015/16 financial year as a big factor in their decision to cease continuation of three ASD programmes.

After negotiations with the Ministry of Health, a new contract was not signed. Atkinson says that the Ministry will be seeking alternate providers to continue services for ASD clients and also the others affected by home care and facility based respite cuts.

The Minister for Disability Issues palmed off suggestions of reductions and cuts also. When contacted by this blog, Nicky Wagner says she had no knowledge of the letter sent out by IDEA Services and questioned some of the quotes published on this blog.

“I haven’t seen this letter but nothing you quote is correct”, Wagner said.

Yesterday, the Minister announced the members selected onto a co-design group that will be tasked with transforming disability supports. Some concerns have been raised by members of the ASD community about their representation on the group.

Gabrielle Hogg is advocate for people on the Autism spectrum and says that a lack of representation goes against a call from the United Nations to have people with Autism in decision making roles on Government advisory committees.

Hogg says that she is very concerned that people on the spectrum are being ignored.

“Autistic individuals feel very much locked out from having direct feedback with being on the group”, Hogg said.

More to come.

Thousands on the Autism Spectrum have support cut

Members of the ASD (Autism Spectrum Disorder) community have been left reeling after news that IDEA Services will no longer provide support to families due to funding cuts by the Ministry of Health.

Three popular and successful support programmes will get the chop, leaving many on the spectrum without their day bases and no education for families. It also means that the several thousand on waiting lists now have to miss out, at least until something else is sorted.

The news comes as a massive blow to the ASD community, and IHC New Zealand’s boss Ralph Jones says that the timing of the announcement comes as an “extra blow” that is “devastating” for the organisation and the people it supports. Just a few weeks ago, Jones also announced that several support services would be cut, including home support and facility based respite.

Other providers are now set to not only bare the increase in demand from the over 12,000 people affected by those cuts, but now also the large numbers involved with ASD programmes.

ASD programmes run by IDEA Services to be cut are:

Growing Up With Austism

ASD Plus

Communication & Behaviour

In total, IDEA Services was underfunded by a total $500,000 in the past financial year as the Ministry of Health continues its cut backs. This news comes despite the fact that Minister for Disability issues said that funding has increased by 4% each year throughout the sector.

IDEA Services has been providing large amounts of support to the ASD community since 2013 under a contact with the Ministry of Health.

The Government simply must inject more funding into disability support. If not, big cuts like this are only going to continue. Labour MP Grant Robertson took to social media to air his concerns, but very few others in Parliament have touched on the issue.

“We should restore the funding for this as part of a comprehensive and diverse set of support programmes for those with autism. It is what a caring and inclusive country would do”, Robertson said.

People suffering from autism and their families have taken to Facebook to air their concerns. One woman said that IDEA Services had done a lot of good work to develop autism awareness training but the Ministry of Health hadn’t provided enough investment for it to take place. Another woman, who works for a National Group Organisation (NGO), said that families are being left with less and less support while workloads for organisations only continue to lose workers who are fed up with being unpaid for extra hours.

This blog has contacted this Minister for Disability Issues and the Ministry of Health for comment.