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SocietyDecember 4, 2023

What happens when your WINZ-funded therapy stops?

Image by Archi Banal
Image by Archi Banal

For more than a decade, WINZ-funded therapy helped one woman manage her chronic depression. Then, the money stopped coming. 

Content warning: This story discusses depression and suicidal thoughts – please take care. 

Ellie* remembers crying herself to sleep, wishing that she wouldn’t wake up, when she was just 10 years old. “It’s been a part of my life forever,” she said, now 45 years old. “A lot of people think that depression is just feeling sad, but it’s feeling like nothing is enjoyable any more. It’s when you think about the things that used to feel good, and there’s just nothing there. It’s a really empty, hopeless feeling. You feel like you’re not even really a person.”

Her high school years saw a lot of time spent in the counsellor’s office, and university brought with it a whole new set of struggles. Ellie became stuck in a relentless pattern of completing a semester and then dropping out, her grades soaring to A’s and then crashing just as quickly to D’s. She received a depression diagnosis in the early 2000s and began taking antidepressants, while managing to take on part-time and volunteering positions when her mental health allowed. 

“You constantly feel heavy, like you don’t have the energy to do anything,” she said. “Going for a walk feels impossible when you don’t even have the energy to lift your arms to turn on the TV.” The inability to work due to her chronic mental health condition means Ellie has been a beneficiary for her entire adult life, and in 2013 she decided to start attending regular therapy sessions through a disability allowance provided by Work and Income New Zealand (WINZ).

You feel like you’re not even really a person.’ Photo: Getty Images

Therapy can be a transformative tool in people’s lives, says psychotherapist and counsellor Beth St Claire, who has worked with Ellie and a number of WINZ clients for years. “To be in a well-supported and compassionate process can be life changing. Seeing a counsellor can sometimes help to identify the roots of an experience and, once you unravel all of that, there’s a real chance of making significant differences to people’s lives.” Through therapy, people can re-enter their studies, or the workforce, or just find ways to better cope with daily life.

“People find that they can function better and actually have more satisfying lives, even if they’re not employed, or they’re on very limited means,” she said. 

Ellie found regular therapy immensely useful, despite having to endure the “humiliating” process of asking for her GP to confirm to WINZ that she was still suffering from depression every three months. “It took a while until it started to feel different, but at some point things just weren’t as bad anymore,” she said. “I found just this new level of managing everything, and that there was a limit to how far I would fall. I could also message her and ask for an appointment if I needed to come in sooner – having that kind of support was amazing.” 

Case managers approved Ellie’s requests for regular therapy for over a decade, allowing her to access up to 30 sessions a year. She believes that this regular counselling is the reason that depression hasn’t seen her take her own life. “There have still been times where I’ve felt quite low, but there have only been a few times where I have been in truly in crisis and truly at risk,” she said. “I credit that all to therapy.” She was never given any reason to believe there was any limit imposed on her therapy sessions. 

A Ministry of Social Development office

As of September 2023, there were 1,818 people in Aotearoa receiving a disability allowance for counselling sessions through WINZ. Under the allowance, applicants can generally receive up to 10 counselling sessions in total, with the possibility to extend support to up to 20 more sessions if that person’s medical or nurse practitioner recommends they are necessary. This number is the total amount, not an annual allowance, although St Claire has encountered confusion around this limit among clients, counsellors and case managers alike.

“There’s a huge issue with the allowance in terms of how many sessions people are eligible for, because you get completely different experiences with different case managers. Some people have no problem getting it renewed when they apply for more, others get put through their paces a bit to get those additional sessions, and others are told they’ve used their 30 sessions up forever, for the rest of their time with WINZ, which is ridiculous.”

Although over time she had armed herself with useful tools and strategies through counselling, Ellie found herself dropping into her deepest depression in years during Auckland’s 100-day lockdown in 2021. What compounded the depression further was the fact that her phone was faulty, so text messages from her therapist had not been getting through while she was isolated. “I felt pretty abandoned. I shut myself in my room for weeks and cried.” Eventually, one of her flatmates sat her down and said she needed to seek more support. 

She reached out to her GP to explain she was in crisis, and sent off the GP’s note to WINZ to be approved for more therapy sessions, just as she had without issue for years. Except this time, WINZ contacted Ellie to say her request for support had been declined. Over the phone, a representative told her that counselling assistance was only ever supposed to be extended for clients in “exceptional circumstances” and that long-term counselling should be looked after through community mental health instead.

Those “exceptional circumstances” depend on the unique situation of each person, said Mark Goldsmith, Ministry of Social Development regional commissioner for Auckland Central-East. “Their case is assessed by a regional health or disability adviser who provides us with their expert medical opinion.” In Ellie’s case, “we exercised the maximum amount of discretion possible to us” he said. “This level of continued support for conditions like depression is provided through the public health system.”

The cracks begin to form. Image by Archi Banal

Ellie had no idea there was a limit on how much therapy WINZ was able to provide under the disability allowance, nor that she had long exceeded it, and describes the “terrifying” moment she found out she would no longer be able to access the therapy she had relied on for over a decade. “There have been multiple times in my life where I have felt suicidal, it has always been a presence in my life. So the thought of going through the next 40 years without being able to manage that stuff with a professional was so terrifying,” she said. 

After it was recommended she access community mental health services, Ellie found that she would not receive the same level of care through a system described as being at “crisis point” by a local psychiatrist. “The only ongoing support that they had was for people who struggle with sort of basic functioning things,” she said. “And even for that, there was a nine month wait.” While she was assured she could access the community mental health crisis line whenever she needed it, Ellie felt it was just “ambulance at the bottom of the cliff stuff”. 

Private therapy was the only other option, but the cost proved to be a barrier. A Consumer NZ survey of private providers found the cost per session averaged $125 in Auckland which, at the frequency Ellie required, was out of reach for her $501-a-week benefit. She found local therapists operating on a sliding scale that went as low as $30 a session, but they too came with months-long wait times. “I often don’t get a warning,” Ellie said of her mental health. “It’s not like I can go ‘I’’m probably going to need therapy in a month’. That’s just not how it works.” 

St Claire, who worked closely with Ellie for nearly a decade, said she was also caught off guard by the decision by WINZ. “To suddenly withdraw this support from people is to sometimes remove the one place where people feel they can be honest about what was going on inside their heads, or the only place they are starting to build trust in themselves and trust in another person” she explained. “For people who have a tendency towards suicidality and self harm in particular, they can start to think they don’t actually deserve any support or help.” 

Due to her initial distress at receiving the news over the phone, Ellie was granted a further five discretionary therapy sessions from WINZ. Unfortunately, she says those sessions were mostly spent managing the fallout of the decision. “It just doesn’t make sense because I’m on the benefit for lifelong depression,” she said. “They said I can now only get short term therapy for something specific, like if someone dies. But my need for therapy will always be because of the same thing: depression.” 

Photo: Getty

She lodged a disagreement of the decision with WINZ, but they upheld the initial ruling. “It would be fine if there was something else in place. But it’s not community mental health, because they don’t have the funding and they’re overworked and overwhelmed,” she said. “It felt a bit like a great big giant crack that I’m falling down, and WINZ is saying ‘that’s not our problem’.” Ellie took her complaint further to a review of decision hearing, where she met with representatives from WINZ to share her side of the story. 

For weeks, she crafted an extensive statement about the impact that therapy has had on her life, and her fears for the future should it be taken away. “I have been suicidal multiple times in my life and am afraid that without, access to regular support, the next time this happens I will not live through it,” she wrote. “My medical disability is such that without access to appropriate care, it is possible I will repeatedly find myself in crisis. It is the ultimate ambulance at the bottom of the cliff, a cliff that you are telling me I will have to fall off again and again.”

“I’m afraid, too, for all the people in similar circumstances to mine, but who aren’t in a position where they are able to advocate for themselves.”

The night before the hearing, she felt sick with nerves about reading the statement in front of people. “It was this weight hanging over me. I just had to keep reminding myself that it’s not just about me – the more people that complain about things, the more likely something is to change.” Friends had helped her revise her statement for days, which also made her worry that she was going to present as too articulate and knowledgeable to need further help. 

“It’s a line that you’re treading all the time with the system: if you’re not put together well enough, and you’re not really articulate, they’re not going to take you seriously. But if you’re dressed too nicely, and you’re too articulate, they don’t see your need any more,” she said. “It’s a trap. The better I advocate for myself, the less likely they are to believe that I need help.”

Ellie says that the hearing itself felt “disrespectful” and “dehumanising”. The chairperson was 30 minutes late, she was addressed by the wrong name multiple times, and when it came time to read her statement, she was discouraged from doing so aloud, instead encouraged to summarise her thoughts. “It didn’t feel like they were listening to me,” she says. “Even when I started reading, they were shuffling their papers and looking at other stuff. That’s not the way you treat other adults. It’s not the way you treat people.”

After the hearing finished, she says one of the representatives joked that they would take the papers back to the office, but couldn’t tell her where it would end up next. “It was very, very dismissive,” says Jess, Ellie’s flatmate who was also in attendance as a support person. “It really highlighted that, for them, this was just a boring thing that they had to do as part of a normal work day, with no real understanding of the fact that it was Ellie’s life and livelihood, very literally on the line.” 

In response to Ellie’s account, Goldsmith said: “We have spoken with those involved and are satisfied that Ellie’s hearing was conducted with respect and professionalism. The chairperson was delayed due to heavy traffic and apologised for this. They could not recall any jokes being made.”

A Work and Income office

A few weeks after the hearing, Ellie received a letter saying that WINZ was upholding the original decision to withdraw support. “Advice was sought from the Ministry’s Heath advisory team, who have confirmed that there are no extenuating circumstances for this assistance to continue to be paid,” the report read. “The Ministry appreciates that the Applicant was not advised the payment for counselling sessions was temporary, and this led the Applicant to believe that funding for counselling would continue indefinitely.”

Ellie didn’t have high hopes for the decision, but said it still hurt to receive the news. “When I opened it I felt very flat, but I’m still really proud of myself for what I did do,” she said. One positive from the hearing is that she has been moved onto the Supported Living benefit of $530 a week, allowing her to save a little bit of extra money every week to eventually access private therapy next year. Still, the fear of crisis remains. “It can happen so quickly, getting to that low point. And suddenly you’re trapped and not able to reach out.”

On the final decision, Goldsmith told The Spinoff “we empathise with Ellie’s struggle with depression and have done what we can to support her by paying for between 10 and 30 weeks of counselling every year between 2010 and 2022 through a Disability Allowance.” He later added that, after the hearing, “we are doing what we can to help her receive regular, ongoing support for this through the public health system.” But with the mental health crisis being what it is, Ellie is still waiting for any sign of that regular, ongoing support. 

It was “awful” to see these services taken away, said St Claire. “As counsellors, we can see what that person needs. They need that stability and consistency. It’s not just about whether they are happy or not, but whether they can maintain their competency enough to pay their bills and stay in their house.” Her flatmate Jess was in disbelief at the decision. “It just really feels like she’s stuck in the cracks between the health system and the state care services system,” she said. “There’s just a gap, and no one seems that interested in fixing it.” 

Although she is dispirited by the process and is now having to stay extra cautious around her own mental health, Ellie said she is determined to speak up for people who might not have the ability to speak up for themselves within a confusing and opaque system. “I can’t be the only person who gets therapy through WINZ, so I’m not just doing this for me,” she said. “I know that not everybody can advocate for themselves like this, so I just wanted to be the noisiest drop in the bucket that I could be.” 

*Name has been changed

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