Geoff Helisma
One of the NSW Carers Strategy 2014-2019’s key objectives is to “create positive media campaigns that portray carers as real people”, the purpose of which is to allow carers to feel that the “broader community understands their experience”.
In 2010, an Access Economics report, The Economic Value of Informal Care, rated the value of unpaid carers at $40billion – a 33 per cent increase on the 2005 estimate – or, as the carers strategy puts it: “unpaid care is critical to the sustainability of our health and community services systems”.
Minister for Disability Services John Ajaka MLC says it’s “important to unpaid carers that the care role is recognised by the community” and that “as ordinary people [they] would like the broader community to understand that caring is both rewarding and often challenging”.
Geoff Helisma met with Jo Vestergaard, who is the Lower Clarence Carers Support Group coordinator and president of the Yamba Lions carers support group, her son Torsten, 18, who has cerebral palsy, and mother and daughter, Jenny and Jody O’Brien. Jo’s other son, 15-year-old Joel, has Down syndrome.
The NSW Government says it wants the state’s 857,000 carers to be able to “participate fully in their own social and economic life” and to be “healthy and live well”.
It’s an honourable objective, but that reality is some way off into the future. For instance, why the need for support groups in the first place? And, why is it necessary to have two support groups in the Lower Clarence?
The Lower Clarence support group offers “support, friendship and information to all” and “several social events such as high tea, Christmas in July, Carers Week and a Christmas party” during the year.
These low cost or subsidised-for-carers events hardly amount to a full social and economic life.
And, when it comes to gaining financial support outside of the limited funding available through the support group system, each group is left to its own devices.
Jo Vestergaard says that the Lower Clarence group (and others like it) doesn’t qualify for funding outside of things like venue hire, administration, resources and guest speakers.
“After quite a long time of struggling, we had some carers [who were Lions members] come along and talk about … how fantastic Lions was and encouraged us to approach the Yamba Lions and ask for some funding,” Jo says.
Torsten, who was fundraising to buy himself a motorised scooter, was somewhat of a catalyst in the creation of the Yamba Lions carers support group.
“We met with [then] district governor Deyann McDonnell, who is a Maclean Lion; she’s a marvellous lady,” says Jo.
“She’s very passionate about inclusion in Lions Australia for people with disabilities. We had several conversations and she was determined to find a way for a carer group to be more directly connected to Lions.
“She did some research and said we can start a branch of the Yamba Lions that directly supports the carer group. It is the first time in Australia that a Lions club has formed a specific carers’ support group,” says Jo.
“It has given some of the carers ownership over how they function in the community and it has motivated people to stretch themselves beyond what they would normally do. Basically, people are getting out into the community … doing some fundraising activities and raising the profile of carers in the community. ”
“This allows us to create some new connections for carers and to start conversations and … perhaps, get their loved one involved in Lions as a community volunteer – that’s another goal.”
“Because we all have relationships and friendships within the carers support network, we support each other in those relationships. We gain confidence from each other [by] being together in that situation. A lot of these people wouldn’t normally do that. Fellowship and relationships are built as we stretch ourselves to go out and do more.”
Deyann McDonnell says the formation of the Lions support group might be a world first, too.
The NSW Government says it wants the state’s 857,000 carers to be able to “participate fully in their own social and economic life” and to be “healthy and live well”.
Deyann is a District 201N1 Global Membership Team (GMT) leader and a member of the Australian multiple district team – a system designed to “proactively support the health of Lions Club members around the world”.
“Coming under Lions,” Deyann says, “the support group has the authority to fundraise. They also have insurance cover for all of the activities they run, which is very hard to get as a small independent group.
“It also opens up access to funding to respite care places and any other health care resources; it’s a great door-opener for the group to the Australian Lions Foundation, the Lions Club International Foundation and NSW and ACT Safe Site foundation.”
Torsten’s story
(Above) The A Team, Jody O’Brien and Torsten Vestergard, are the Yamba Lions Carers Support Group’s champion fundraisers.
Torsten is a student at McCauley Catholic College, where he is in the process of completing his second year of year 12 study to gain his higher school certificate.
His cerebral palsy can make it difficult for an untrained ear to understand what he is saying, not unlike getting used to someone’s accent.
This, along with how the condition affects his motor skills, has meant that Torsten has had to sometimes deal with discrimination dished out by those either scared or ignorant of his condition.
He says he has “experienced quite a bit of discrimination”, mostly from within his peer group.
He says the worst time was “probably when I was in Year 6 at my primary school. There was quite a significant group of people. It first started with me being asked to go and play a game of touch football. [Then they were] laughing and teasing me; they also said some rude stuff to me and called me quite a lot of discriminatory names. They [made] it quite personal and started saying things about my whole family; and it just tore me apart, really.”
Torsten acknowledges that other kids without disabilities are teased, too.
However, he tells a positive story about more recent times at McCauley College, perhaps reflecting on society’s changing attitudes towards people with disabilities.
“It was my Year 11 school retreat and we were playing football,” he says.
“I fell over and I hurt my back, and my CP, my cerebral palsy, was mucking around. I couldn’t hold my cup steady; my nerves and joints, I couldn’t control them. My friend, she came over and sat down next to me and helped me with my food and my drink.”
“And when the staff were unable to help, my friends stepped in to help me out, to move me around and with eating and drinking. I saw a decent side to all of them. I saw the kinder side and that actually brought me closer to my group of friends and [it was] more inclusive.”
Jo says Torsten’s disability was magnified as a result of the fall.
“Without being directed or encouraged, his friends just rallied around him in a very natural way and helped him, included him and supported him, without making him feel like he was a burden on them … it was just a really nice natural thing,” she says.
This event was a turning point for Torsten, a revelation of sorts.
“It showed me that when it’s a tough time for me I can count on my friends to help me,” he says.
“If I got stuck they would come and help me and support me.”
Torsten’s experience demonstrates that inclusion is a remedy for discrimination.
A teenage writer, maw17, puts it this way in an opinion piece on online, teen-written US magazine, Teen Ink: “Even though discrimination against people with disabilities is a big problem for our society, there is a solution, inclusion. A big reason people with diseases like cerebral palsy get discriminated against, is because people think they are different, when they really are not.”
Torsten’s personal growth as a result of being included has equipped him to overcome the fear of letting go.
“My HSC is over two years,” he says.
“I’m doing pathways. My principle gave me the opportunity of doing my school formal last year and ‘graduating’ with my group … or go to my formal this year. I was talking to my friends about it last year, and every single one of them said you’d better come.”
So it was with some trepidation that Torsten faced his second year of Year 12 after his friends had graduated.
“I have felt inclusion in this year’s group; but at the same time it did take a while. I have the same connection with this year’s group, like I did with last year’s group.”
Jo says: “He’s been surprised that he found those connections because he wasn’t expecting them.”
‘It showed me that when it’s a tough time for me I can count on my friends to help me; if I got stuck they would come and help me and support me.’
The A Team: Doing it for themselves
Torsten Vestergaard and Lions carers group secretary Jody O’Brien are the group’s main fundraisers.
Dubbed the A Team, they have a synergy that inspires people to interact and offer support.
Jodie, 31, is both a person with a disability – she has schizophrenia – and a fulltime carer who has been looking after her mother, Jenny, since she was 16.
As it transpires, Jenny, who suffers from a “multitude of health problems”, is a carer, too, supporting Jody with her disability.
“Mum and I get along really well,” says Jody.
“She’s very supportive of me, she encourages me to get out there and do things. She doesn’t want to feel too much like she’s taking up all of my time, she wants me to get out there and experience the world. The fantastic thing is we’re both a bit like giggling kids; I think that makes it much easier.”
Torsten’s and Jody’s fundraising is generally in the form of selling raffle tickets.
“They go out and they basically walk around the markets and they chat to people and they sell more tickets doing that as a team than we can doing anything else,” says Jo.
Being attached to Yamba Lions, Jody says, means that “people respond to us so much more readily because they’re … aware of the Lions club and what they do for the community”.
“I was really amazed with that, as soon as we put on the Lions shirts and went out into the community people would come up and talk to us.”
“… about what projects they know Lions have done.”
” We decided to go and do whatever fundraising we could around market stalls and we just got a really fantastic response; and people responded to Torsten so fantastically.”
“I was joking with him, saying that he really is the social butterfly of the club because everyone who comes up to us hugs him.”
Torsten says: “For me, it’s about putting myself out there and engaging with the community. I go and talk to the stallholders; we discuss the prizes and talk about the Lions and how we got involved.”
Torsten has also been a guest speaker at Lions, where he has used PowerPoint presentations to convey his message. “I want to be a role model for other people in the community who have disabilities,” he says.
Jody says the carers group has been a huge step forward for her and those involved.
“I initially joined [the Lower Clarence Carers Support Group] because there is so much support and information there.
Everyone has gone through difficult times, they all understand exactly what it’s like to have hardship and everyone is extremely real, loving and understanding.
“When we developed the [Lions] branch club; that was so we could just focus a bit more on fundraising and getting the word out there for carers and also for people with disabilities.”