14 Mar 2022

Covid-19: Ministry of Health 'so far removed from the day-to-day lives of disabled people'

7:46 pm on 14 March 2022

Ōpōtiki mother of three Kathleen Sanft is a "super-mum" by any measure, but Covid-19 infections in children are enough to make any parent sick with worry.

Kathleen Sanft and children

Kathleen Sanft with her children. Photo: Supplied

Despite every effort to protect them, her disabled 12-year-old daughter and non-verbal five-year-old son have tested positive for the virus.

Both children have autism and attention deficit hyperactivity disorder (ADHD), along with her non-verbal 13-year-old son.

Sanft's daughter is suffering the most, as Covid-19 spreads through the house.

"Her legs are sore, they're throbbing, she's on paracetamol. She's got hot tears, like hot and cold shivers, and her scoliosis is very painful," she said.

While the family is well-prepared, Sanft cannot help but worry about her children.

"We've also lost family, we've lost friends to Covid, so it's very real. We just hope that we are prepared enough," she said.

"I like to try and think of myself as super-mum ... but when it gets to a point where I physically can't, that's when I have great concerns for the children.

"Maybe one of us could get moved off to hospital if it gets so bad and that is when my anxiety will go through the roof."

Three support workers usually help with the children but the family must now isolate alone - a constant worry for disabled people who need assistance in daily life.

Concern about support for disabled people during the Omicron outbreak has prompted Disability Rights Commissioner Paula Tesoreiro to launch an urgent inquiry that will examine the continuity of essential in-home services.

Rachel Mullins

Rachel Mullins. Photo: Supplied

Rachel Mullins uses a wheelchair and has a team of six support workers who come to her Christchurch home to get her up in the morning and into bed at night.

"I couldn't get out of bed without them, but I also probably couldn't go to the toilet without them either. If nobody was able to come I'd be stuck in a wet bed, which wouldn't be pleasant," she said.

Mullins worries about her support workers being forced to isolate, getting sick or unwittingly bringing the virus to her door.

"If I get sick, chances are there won't be a place for me in the hospital because the hospitals are potentially going to be overrun. My staff can't come in and help me because I'm contagious, but I can't do everything myself," she said.

"To say I've got a six-pronged plan for what happens for when my staff start falling - no I don't - and I just have to think it can't get that bad."

Mullins belongs to a Facebook group another disabled person has set up to help them find someone else to step in if their support workers are sick.

She said the Ministry of Health should be more responsive to disabled people.

"The ministry is so far removed from the day-to-day lives of disabled people," Mullins said.

"Unless disability affects you directly in your life, or you know someone with a disability, or you've broken your leg and been on crutches, nobody understands."

Kerri Bonner

Kerri Bonner. Photo: RNZ / Nate McKinnon

Kerri Bonner has three support workers who come to her Christchurch home every day.

She has cerebral palsy and uses a wheelchair, so they help her get up, cook and eat.

Bonner is blunt about the consequences of being left to fend for herself.

"I wouldn't survive," she said.

Like Rachel Mullins, she has devised her own plan in the absence of any targeted guidance or advice from the Ministry of Health.

Bonner feels the weight of the health and safety responsibility to her staff.

"I have gloves, aprons, I probably need to get some visors, which I'm having trouble tracking down online, but that's something else I probably need to invest in. It's a lot of extra pressure," she said.

"They want to know what I'm doing to prepare, but with no sort of guidance I'm pretty much making it up as I go along.

"There should be more support for those of us who receive Ministry of Health funding to keep us alive."

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