Lockdown brought families to breaking point

Lockdown brought families living with intellectual disabilities to breaking point.

While most Kiwis stayed home, fired up their wifi and began to live and work online, the isolation was extreme for families caring for young disabled children at home all day and for disabled adults living independently.

These two groups, identified by IHC as being especially vulnerable, were the focus of a series of emergency initiatives. IHC mobilised its nationwide volunteer network and worked with partners in the disability sector to connect with people online and on the phone.

IHC Director of Advocacy Trish Grant says young families had no school, no respite, no outside activities and children who wouldn’t engage in online learning. “Life was pretty grim, and they had to start having four or five conversations with various agencies.”

“People were panicking, ‘How on earth am I ever going to be able to cope?’,” Trish says. “Families were feeling quite frightened about how things might escalate. With a couple of families, I was really worried about mental health issues,” she says.

“It was not just about disability support. Families live fairly highly tuned lives, so that when one thing changes then everything topples over. What we know is that systems are complex and don’t work easily for young children and families.”

Trish says policy and practice need to join up so that children receive the help they need. “You also need to know what you can do in the interim if your child needs something additional.” She says this might mean being able to talk to a psychologist for half an hour. “Always being on the back foot is not a great place to be.”

She was also very concerned about the disabled people who were living independently. For weeks they often had little in the way of human contact, except for deliveries of groceries, after losing their regular support workers. “There was no question that people felt very challenged. At the start there were people who were very angry.”

New Zealand became a largely cashless society, with many businesses accepting only cards. This excluded people with intellectual disabilities without credit or debit cards. “It was a real problem for people not being able to purchase things,” Trish says.

Many Kiwis switched to video calls to connect with families, friends and colleagues. But a lot of disabled people don’t have smart phones. Only 53 percent of the 900 people in IDEA Services’ Supported Living service had mobile phones.

“It was great when we got the 0800 number up and running,” she says. People First New Zealand, IHC and The Personal Advocacy and Safeguarding Adults Trust collaborated on the helpline.

IHC also coordinated Awhi-at-home, a Facebook community for parents to keep connected and support each other, with input from a number of disability and government agencies. In a further initiative IHC and Carers NZ launched wecare.kiwi – a free support network for people living on their own or caring for a vulnerable person. Carers NZ triaged the requests for help and then referred family carers or the people with disabilities to IHC.

IHC Self-Advocacy Coordinator David Corner usually receives five hours’ support a week from his disability service. This was reduced to one hour a week for the whole of Alert Levels 4 and 3. Realising how this was going to affect people in his position, David took action. Every week he called 10 people and says he found that people were losing their confidence.

“The staff were actually doing their shopping. That was quite sad in some cases because quite a lot of the people that I was talking to could have done their own shopping. It was sort of the only freedom – it was the only time you could get out and talk to people,” he says.

“I don’t think bubbles were explained to them. If you lived on your own, you could add another person to your bubble.” And staying connected was difficult with pay-as-you-go phones. “Some people were a bit worried about their mobile phones and being able to top-up their mobile phones.”

Fiona McKenzie manages her daughter Claudia’s individualised funding and in lockdown managed all her support as well.

“For a lot of us Level 4 and Level 3 were just the way we live anyway. Suddenly, now that the whole country is in that position, the Government and the ministries have been able to free up and provide things that families have been asking for, for a long time.”

Fiona, who lost her support worker for Claudia, 21, says getting respite and good support is a constant issue for families. Families might qualify for respite hours but have trouble using them.

During lockdown Fiona, a Canterbury filmmaker, was part of the Awhi-at-home crew. In a series of video interviews posted on its Facebook page Fiona talked to mothers about what they were finding hard and what worked for them. It was a lifeline for many parents, but she says they are wondering what life will be like in the ‘new normal’.

“There is a degree of cynicism and eye-rolling. How many times do we have to say that we need this and it’s not available? It’s not just the money; we need more options. We need enough resources to make our lives bearable.”

Fiona says the present funding systems just add stress. “I don’t talk to other families about my budget. I am terrified that I might be getting too much or not enough. We don’t want to be employers. We don’t want to do timesheets and contracts,” she says. “Families are tired, and they all recognise that this is an opportunity for a personal reset. This is a good time to change the systems that are not working for families. The families are not just saying listen to us. The question now that people want to ask is how can you show me that you are listening to us?”

Photo caption: Canterbury filmmaker and mum Fiona McKenzie interviewed families about ways to get through the lockdown. She is pictured with her daughter Claudia.


This story was published in Community Moves. The magazine is posted free to all IHC members.

Read the full issue of Community Moves.