Long Covid sufferers fear benefit rule change

Long Covid can cause a range of symptoms. Photo: Vinay Ranchhod/RNZ
Long Covid can cause a range of symptoms. Photo: Vinay Ranchhod/RNZ
People suffering from Long Covid are scared they will face penalties under the coalition government's benefit reset.

Social Development Minister Louise Upston has announced a ramping up of benefit sanctions would begin from June.

The ministry would begin "work check-ins" for those who had been on a jobseeker benefit for at least six months, to make sure beneficiaries were "taking appropriate steps to find employment and are receiving the right help", Upston said.

Long Covid sufferer Sarah Macrae was so sick, she had to leave her job as a director at Waikato Hospital in September 2023.

Facing a huge drop in wages, she went straight to Work and Income for help.

"I sat in front of the woman and I burst into tears and I just said, 'I am absolutely terrified. I've never claimed a benefit a day in my life. I have worked every single day. I'm a professional. I'm now solely responsible for four children, and I don't have a job. And I'm incapable of working. What do I do?'"

Backed by her GP, Macrae initially applied for the supported living payment or sickness benefit, because it was more money and could give her disability status.

But the ministry rejected the application because her medical certificate did not state that she would be unable to work for two years or more.

She was then put on the sole parent support benefit - which aims to help single parents find or get ready for work.

Her extreme fatigue, severe pain and mental impairment meant she was given a medical exemption from seeking work.

"Every time I do push myself, I'm in agony. My kids are watching me trying to get them to school in the morning and I can't even raise my arms to go on the steering wheel without crying in pain."

Despite the exemption, Macrae was sent multiple texts to take part in online job seminars, which she said was humiliating.

"That, to me, was just such an insult, you know, even a professional for as many years as I have. I'm not capable of working or I would be working. There is nothing that would stop me getting a job."

RNZ has seen the texts offering the job seminars, although the ministry denies ever sending the invitations.

Macrae was finally approved for supported living in March and said it bumped her total benefit income from $413 to $468 a week.

Social Development Minister Louise Upston. Photo: RNZ
Social Development Minister Louise Upston. Photo: RNZ
But with four children to feed and $560 a week in rent to pay, she was struggling to cope and has been asking the ministry for food grants.

Because she had been given a $300 grant at least three times in the past year, the agency had started asking her to prove she was buying cheaper food, she said.

"I've been asking (MSD) for food grants because I've literally got no way of making ends meet. I've used up every single little bit of savings I ever had. I sold the second car I had, I've used all of that. I've literally got nothing left.

"And still they're belittling me for the fact that I'm claiming too many food grants. I was just like 'You kidding me?'"

Macrae said she wished Work and Income would give people with Long Covid an individual case manager.

"We are already so fatigued, brain fogged, cognitively impaired... That's been one of the hardest things, is constantly dealing with different people and not having a person. 'Hey, remember what happened last week. Can we help again this week?' You know someone who sees it or knows my file."

Another Long Covid sufferer, Hannah, said she also struggled to access the supported living benefit.

She said contacting Work and Income to update her details or book an appointment was a nightmare.

"Fifty percent of the time you can't even get hold of [anyone] on the phone. You call them and you get disconnected or you call them and you end up on a long as wait list."

In response to questions, the ministry said anyone who experienced difficulties applying for support should get in touch.

Jessica (not her real name) said Long Covid had left her unable to work since October 2022 and she was on the jobseeker benefit.

She said up until now, Work and Income staff had been supportive and realised she could not look for work.

But now she was scared she would face penalties under the coalition's new "work check-ins".

"It worries you with the whole National government, what they're doing - like trying to say 'Oh, there'll be options for people to get back to work who can work'.

"I'm like, 'I'd love to be back at work but I physically can't'. So what are they going to do?"

The Ministry of Social Development said anyone who did not meet their obligations to look for work would be contacted to find out if there was a good reason. If there was not, they would be told to comply.

Upston has said the check-ins would only apply to those on jobseeker benefits and not those on sole parent or supported living benefits.

However, people on those benefits would also have obligations in the future - although they might be different, she said.

"Their obligations might be to look for a few hours' work, their obligations might be in training or work preparation, but we don't want to wait for the two years before we start to provide the support that they need to get back into employment."