It is National Carers Week from October 12-18, and regrettably a lot of people don’t really care. They don’t need to care for someone with a disability so they feel the occasion has nothing to do with them.
Ever gone to a supermarket and seen ‘those people’ – oh, that is a horrible term – with a disability and thought, ‘those poor souls’, and then looked away because ‘it’s not my concern’?
If we can perform one good thing this month perhaps let’s share a glimpse of what it’s like in their world. We’ll start by dismissing the patronising approach, and may we correct those who use the line “people with disabilities” – you may have one or a multiple number of health issues that may make you a person with a disability, but no one can have more than one disability.
Apologies for the political correctness or a hint of being on the attack, but it seems being in the world of a carer of someone with a disability is largely about trying to convey to those outside of it that the simplest form of frustration can be consuming.
Few understand this environment more than Pat Smitherman, of Clayton Bay, who 25 years ago started a carers support concept that is now the basis of international programs that assist those who care for someone with a disability, be it mental and/or physical.
When Pat started out ‘carer’ was a new word. Now there is The Carers Recognition Act (2005) South Australia, and people have used Pat’s model with the key element being the carer is at the centre of the program.
With help and amazing encouragement from her husband Peter, the program has changed the lives of so many families, and since her retirement in 2006 the Smithermans have continued to be an invaluable reference source through the Carers Support Centre program, including the tireless service provided in Victoria Street, Victor Harbor, under the auspices of Health SA.
The impact on our community is emphasised by the fact there are 213,700 South Australians providing ongoing assistance to someone with a disability or an age-related frailty (2000 ABS), including about 300 from Goolwa-Victor Harbor. This does not include those who are not registered as a carer along our south coast, and there are lots.
As much as everyone can say ‘more should be done’, the fact is, caring for those in need can happen to anyone tomorrow, and it is society’s challenge. If it weren’t for Pat being asked to develop a program which began with a study of carers at home and their families, which gave her an insight what their world was like, we would not have anything near as vital as we have now.
“Initially, in 1990 I was given the responsibility of looking after 80 people,” Pat said. “I talked to people in a caring situation and I picked up they were obviously financially stressed, very isolated, most were grieving in some form, and they were losing their social skills and self-esteem because they were just at home looking after someone else.
“People were withdrawing from the community. The first thing I did was to try and get some contact with them, and I started with support groups. Recreation was not a word that many used, so I declared one day to be a carer’s day-off, and we went out.
“At the end of that day they said things like ‘I have had a week’s holiday… I cannot remember eating with a knife and fork’. It really hit me. I realised there were many caring situations. Predominantly people used to talk about the aged, which of course is a huge area, but there were lots of parents – parents who had babies that had a disability, children having to go through the trauma of where they go to school and how they may be supported. Then I discovered there were children looking after parents, some only six or seven. Their parents may have had a mental illness and they wouldn’t go to school because they feared mum might do something to herself.
“It is a huge issue that people think can be solved with a few support groups or throwing money at them, but it’s much more than that.
“It’s incorrect to make the assumption that everyone who is caring loves that person because it is sometimes not the case, and it is even harder if they don’t particularly like the person. I am concerned about the number of children looking after parents, and sometimes also their brother or sister. Previously, the system never recognised those kids, and we still need to do much better for them.
“Where there is a child born into a family with a child with a disability the marriage suffers because the female is usually the one involved in all the therapy and the contact with the schools – and rightly so – fighting for the needs of the children.
“The father often works during the day and is not involved. He comes home and the wife is stressed out and so their relationship disintegrates; there is no time to be a husband and wife. That troubles me, as does the men feeling left out.
“The other group often ignored are the siblings of children with a disability because quite often all of the energy quite rightly is focused on the child with a disability and the siblings can be out there wondering what is going on.”
Peter’s equally kind nature and willingness to make a difference saw him create time-out events for the carers to again feel alive; that there is a world outside of their home and normal conversations can still be made. He spoke of how some carers do their shopping, and the only person they may speak to the entire week is the check-out person.
“It can be a lonely world out there for a carer,” Peter said.
Neither Pat nor Peter have sought applause for their efforts. Pat remains overwhelmed for having received an OAM on September 11, 2002. She still remembers the date because she described the occasion as one of the happiest days of her life. A Centenary Medal came later.
However, if there is one thing she would like is for people to recognise this forthcoming Carers Week from October 12-18. She wants people to just think about those who are carers for others. “If you think somebody might be in a caring situation, make a point of saying g’day to them or just talking,” Pat said.
“They may feel extremely isolated. A little chat can make a real difference to them. People tend to stay away because they don’t want to get involved; they don’t have to.”
We could fill this magazine with what Pat and Peter have done for carers and the people they care for, and it’s not as if they have cared for a family member or friend and this is their way of giving something back to the system.
They do it because they care, and if you don’t just think that you might be unwittingly placed in this situation tomorrow. It’s why you should say ‘hello’ to a carer this month and for a change make them feel alive. CL
What a great idea; a new community centre to serve the southern Fleurieu region. You can vote for this fund My Idea project from Oct. 17-Nov. 3 and make a difference.
Here is your chance to have your say – help to fund a new community centre to serve the southern Fleurieu Peninsula by giving your vote on the State Government’s fund My Idea program.
You simply go to the website www.yoursay.sa.gov.au/fundmyidea and vote for Alexandrina Connect Inc. concept.
It’s the name of the new group behind establishing a community centre based in Goolwa. A community meeting will be held at the Alexandrina Council Chambers on November 13 at 6.45pm for a 7pm start to officially establish the organisation and kick-start the program. Guest speakers will be Fiona Verity, Dean of Social and Policy Studies at Flinders University, and Karen Bradford, chief executive of Milang Old School House Community Centre.
The fund My Idea program offers up to $50,000 in assistance. There will be other initiatives placed on the website, and whichever one gets the most votes from the community gets the funding.
The group behind Alexandrina Connect needs to raise $120,000 by the end of June, 2015 to lease premises to conduct the initial program, establish the governance structure and further consult with the community.
This is a community project run by the community for the benefit of the community, and the least we can do is help it get off the ground by voting in its favour. You may vote online from October 17 at 4pm til November 3 at 4pm for one of three fund My idea concepts. Thanks for any support!
Without getting into politics, the Federal Government has cut back its funding for certain community projects – including those across the Fleurieu Peninsula. The proposed Alexandrina Connect will help keep those programs and services going.
The Alexandrina Connect Inc. initiative already has the support of local service clubs, community organisations, Alexandrina Council and the Goolwa & District Community Bendigo Bank.