Parents with children on the spectrum age can face many challenges.
Mary Anne Gill talks to a Tauranga woman about how her 41-year-old son is still transitioning.
People call Julia Genet a “champion for change” and her son Richard the “tractor man”.
The 69-year-old mother of two makes no apology for her description and is about to take that even further by offering her innovative company concept to other families in the Bay of Plenty.
The rationale behind her and daughter Caroline establishing New Breeze Ltd in 2004 was a frustration with the system that provided funding and support for Richard who in 1994, at age 18, finally got an official diagnosis of autism and intellectual disability, which in 1999 via a needs assessment, brought with it funding from the Government.
The family, husband Anton, Julia and Caroline, were living on a Hawke’s Bay farm when Richard was born in April 1976.
“Richard was very challenging. He clearly had an intellectual disability, cause unknown,” says Julia.
“When he was 7, he was spinning, screaming, rocking – all the very strong autistic things.”
Julia took him to see Australian-based psychologist and author Dr Tony Attwood who was in New Zealand for a speaking engagement.
“He gave us some basic things to do with Rich which involved a balance between using his fine motor skills and gross motor skills.”
Back then, school was not compulsory for children with a disability.
“Nobody bothered with him much.”
They enrolled him into Hohepa in Clive, a community for children and adults who have intellectual disabilities. There they practiced the curative education principles of Rudolf Steiner.
Richard was in a class of seven and initially thrived in the community but his parents struggled when he was home for the 12-week holiday breaks.
“Rich was having major meltdowns for so many days. We tried to put in place everything we knew about autism but we didn’t have an official diagnosis and couldn’t get one so we struggled and there was no funding then.”
Julia was on the Hohepa Council of Management, the Disabled Persons Assembly and Autism NZ national committees.
“It was a fairly vibrant time for disability then. People were talking out for themselves. It was the most amazing training ground for me.”
As they became more aware of disability issues, Julia and Anton realised Richard felt cloistered in the Hohepa environment.
“We wondered if it was the right place for him. We thought there were more opportunities opening up.”
In July 1999, they shifted him into Supported Individual Lifestyle Choices (Silc) in Tauranga.
“We’d been going up to Tauranga quite regularly visiting my sisters. We loved it here. We saw a house and land in Oropi with 550 mandarin trees and a bed and breakfast which we thought would be ideal.”
They missed it at auction but soon afterwards, it came up for sale again about the time Anton had an accident, which resulted in a severe brain injury. He now requires 24-hour support.
Julia, using skills she picked up when studying real estate, sold the Hawke’s Bay farm and bought the 6000 sq m Oropi property, about 10kms south of Tauranga, and moved there in November 2000.
Richard’s job, when he visited, was to mow the lawns on the tractor. Since he was a baby, his special interest had always been tractors – hence the ‘tractor man’ nickname.
He was struggling at Silc though and there is some debate over whether it was he or Julia who was eased out. Julia maintains she was the problem, not her son.
Lorna Sullivan of Standards-Plus in Tauranga, a long-time advocate for disabled New Zealanders, advised Julia to set up her own company to receive Richard’s individualised funding package.
“It really set a precedent. What we were doing was something quite different.”
There was no way Anton, Julia and Richard, at this time in his life, could live on the Oropi property. “We just wouldn’t have been able to make it work,” says Julia.
She found a piece of land in Maketu that was flat but on the top of a hill and it could house Richard’s beloved tractor.
There was a home there and they built a little cottage for Richard and a big workshop at the back for Anton. It was a breezy site hence the name for the company New Breeze Ltd. It was also a new way of supporting a person with a disability who required 24 hours support.
The cottage was custom built, lined with medium density fibreboard and had everything bolted down.
“Rich didn’t want us (his family members) looking after him. Through the company, we managed Richard’s funding. Then we had to learn how to employ staff. Originally, we went through many staff. We are lucky though, we do get high quality staff despite the pay.”
Isabelle, Caroline, Charlize, Richard and his carer Dhanya Jose with Julia Genet. Photo: Bill Hedges, Rotorua.
Julia and Caroline maintain the system could work for many people.
“I don’t think families are always the best person to look after their son and daughter with a disability for ever. I don’t do his everyday care; the support people manage it and the environment so he’s the best he can be.”
She is a great supporter of the Social Role Valorisation programme, a name given to an analysis of human relationships and services, formulated in 1983 by Wolf Wolfensberger. The theory is that society tends to identify groups of people as fundamentally different and of less value than everyone else.
“This is the key to getting things right for people with differences,” says Julia.
Richard’s nieces Isabella, 10, and Charlize, nearly 5, live in Pyes Pa south of Tauranga.
“Rich loves them to bits. They’re really good with him, they manage amazingly well. Sometimes Rich has some interesting behaviours. For example some of the social skills he learned from acting at Hohepa, he still does today, like bowing dramatically and kissing their hands. To them though he’s just Uncle Rich.”
The Oropi property came on the market again and Julia decided a move back would benefit everyone and be a step towards sustainability for the family, so she put Maketu up for sale.
“It was interesting to see how Rich managed while people were looking at the property. He offered them cups of tea and took them tiki touring.”
They moved back to Oropi in January this year. Richard lives in the main home and Julia and Anton are staying with Caroline and the girls. They want to build a cottage for Richard but council red tape and Tauranga’s booming building market has thwarted their plans so things are moving very slowly.
“Meanwhile Richard lives in the main home happily lording it up there,” says Julia.
The workshop has been fixed up so Anton and Rich spend a lot of time in there.
The plan is still to build a cottage as while they could renovate the flat in the workshop they would still need all the red tape.
“A lot of the mandarin trees are gone so we’ve got some avocados which means we can have a micro business.”
Julia’s granddaughters are looking forward to living on the property with extended family.
“Anton needs 24-hour support. He chokes sometimes. So they have Opa (grandad) choking and Rich yelling. It’s great fun here. I’ve shifted them so many times.”
Julia says she marvels at how well Richard transitioned from Maketu back to Oropi.
“People need to realise how well autistic people can manage change with the right support.”
The next challenge is to establish a collective based on the Australian Homes West model. It is a family-governed service, which supports people living in their own or rented homes.
Julia sees about five families involved and it would enable them all to employ an administrative and support coordinator across each individual family who would have their own support people. A key strength of the model is to allow for succession planning.
A family member can be on the board so when that member resigns, or wants to take leave, another member of the family or friend with the same vision, can take their place.
“For older parents with older children living at home, this is a real solution. The older children can have their own home and support people and a degree of independence. It’s a win-win.”
So does she ever get frustrated or downhearted?
“I sometimes feel sorry for myself when I’m caught up with red tape more than anything. I get frustrated by some of the bureaucratic nonsense.”
In her down times, Julia loves surfing the net, she enjoys reading and spending time with the grandchildren.
“Rich loves celebrations so we have plenty of those.”
She pays tribute to Richard’s carers who she says work so well with Richard and the family and as a team. There are regular meetings between them all but it is the team who support Richard, not her.
That is why he lives a charmed life.
• Any families interested in forming a collective in the Bay of Plenty area should contact Julia firstname.lastname@example.org