A lack of external support in lockdown pushed parents of special needs children to the brink - now they are calling for more support from the Government
With senior secondary school students in Auckland returning to campus this week, some parents in Auckland will be breathing a sigh of relief. Ten weeks into lockdown, keeping an eye on the kids while juggling work from home can be its own full-time job.
And like many aspects of the way lockdown affects peoples’ lives, it doesn’t hit equally. For some parents, the load is disproportionately heavy.
For Auckland woman Angela and her husband (she asked Newsroom not use her full name), life in lockdown with their daughter Olivia demands their full attention and more energy than they have in reserve.
Twelve-year-old Olivia is the only person in New Zealand with an exceedingly rare genetic condition that comes with intellectual disabilities, macrocephaly and a host of other diagnoses such as autism, ADHD and sleep disorders.
She needs full-time care. Back before the lockdown, she was attending Sommerville School in Panmure, allowing her parents to share the load and giving Olivia the chance to get out of the house and spend time with other kids.
Nowadays, outside of trips in the car to spot teddy bears in her neighbours’ windows, it's home 24/7. And with a high- and complex-needs child, it’s hard to fit anything else in.
“For us, the day normally starts between six and seven,” said Angela. Olivia’s body isn’t good at producing melatonin, the sleep aid neurochemical, so if she could be up several times through the night, and then she’s up and at ‘em early. And once the day begins, she requires constant attention.
“We can’t let her be by herself, as she may disappear or run off,” Angela said. “You have to keep watching her the whole time.” And not just from the corner of your eye - “If you aren’t paying enough attention, she will do things to show she is not getting enough attention. You can’t be working while watching her.”
And with both parents working full-time from home, it's become a difficult balancing act, with not enough hours in the day to be a full-time carer and run her own business - and somehow fit the rest of life into the five minutes that might go spare.
“We worked out we are better off paying for somebody to come in and help, rather than destroying our health,” Angela said. She also said she and her husband are lucky they have two people to juggle the hours - as well as access to carers and her own parents, who come in and keep an eye on Olivia for a couple of hours every day.
For many parents of children with special needs, things are even more dire this far into lockdown.
Serving as chair of the Sommerville school board, Angela said they got calls for help from parents every day. Sommerville School has 318 students with special needs, spread across 300 families. Many of them are single-parent families, said principal Belinda Johnston, who is herself a mother to a special needs child.
She said a 75 percent divorce rate for parents of children with special needs meant many were going it alone. And while ordinarily the Government provides some funding for care, the increased load of lockdown has seen no increased payout to relieve the load.
“The Government provides a certain amount of hours of care provided,” Johnston said. “And at this point in the year, many have already used the balance of these up - now we have families at crisis point. I get emails every single day.”
In response to this, Johnston started a petition calling on the Government to provide a one-off payment to people who receive carer support and haven’t been able to get to their usual external care due to lockdown.
With cheaper options for external care like school or holiday programmes off the table, Johnston said parents had burned through the allowance more quickly. On top of that, lockdown in Auckland has meant an extra 200 hours families have needed to look after their child - 24 hours a day, seven days a week.
“Most of these children require supervision while awake and some while they are asleep,” Johnston said. “The mental fatigue and stress these families are facing is massive and there has been no support from Government especially financially.”
The funding from the Government seems a bit removed from the financial reality of hiring a carer; the budgeted $76 per care day will provides only a few hours of care a day. Angela said she and her husband spent $1650 over the last fortnight for 60 hours of in-home care.
“A lot of families in the community can’t do that.”
Johnston said there was some acknowledgement for these parents after last year’s lockdown, with the expansion of the list of goods and services they could claim on special student funding - called the Ongoing Resourcing Scheme (ORS) by the Ministry of Education.
But this year, there has been little to no recognition.
“There’s a lack of awareness of it - not intentionally, I’m sure,” she said. “We are under-represented for sure.”
Despite the funding already in place, she estimated that more than half of the families at Sommerville wouldn’t be able to stretch for full-time care.
She wants to see a blanket top-up for parents of special needs children in Auckland. “It would give the families some sort of relief from the financial burden,” she said.
The anxieties of lockdown have reached these children, who may not understand exactly why they can’t go back to school in person.
“You’ve got children who can’t speak or articulate very well, who have no idea about what’s going on in the world or why they can’t leave the house,” she said. “On top of that, they can’t go to places that are normally calming for them, whether it's the playground or the local gym or something - that increases difficult behaviours as well.”
She said children with special needs were very good at picking up on the anxieties of adults - and right now, there’s no shortage of that.
