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CARER STORIES Leading lady of the Carers Alliance
CARER STORIES Leading lady of the Carers Alliance
| Leading lady of the Carers Alliance |
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| Tuesday, 06 May 2008 10:57 | |||
 This month’s carer’s story is by MaryLou Carter, secretary of the Carers Alliance political party, which was registered in 2007 to contest the federal election under the motto, ‘making the personal political’.We’re grateful that she has agreed to share her story with the readers of Work’n’Care, from her full-time employment as a lawyer to becoming a passionate advocate for children with a disability and their families and carers, and ultimately coming to lead Australia’s first political party representing carers’ interests. MaryLou: It was just over four years ago that I received a letter that would turn me from being fatalistic and just accepting whatever came along into an activist carer. In 2003, I had gone from working part-time to full-time for my husband’s legal practice. That was when our son Nicholas, who has severe intellectual disability and challenging behaviours, was accepted at Kingsdene Special School, a residential boarding school for severely intellectually disabled children, where he would go to school each Monday and come home on Friday afternoon for weekends and school holidays. Since attending Kingsdene School the turnaround in our son’s behaviour and his happiness had been miraculous. The severe level of his disability is such that this segregated environment allows him to be included in the community. Here he learns the capacity to tolerate the wider community in an incremental and measured way so that the approximation becomes the acceptable to him. But he needs lots and lots of patience and lots and lots of practice. This is not in any way to say that this is the environment for all students with disability, but it has certainly been the environment which has delivered the best and most inclusive outcomes for our son. We had applied to the school six years before and were holding on to the hope that he would be accepted so he could maximize whatever potential he had. His isolation at home and his loneliness for friends of his own was re-inforced at his previous special school, where the children came from the four corners of western Sydney with no possibility for specialized after-school care or vacation care—and no possibility of company because our small family just could not provide the friendship and company that he needed. This life-changing letter arrived on 30 October 2003 and told us Kingsdene School would close at the end of 2004 because of funding difficulties. I felt a physical reaction, akin to a fire burning me to the core. This was not going to happen. This could not happen. We approached a disability advocacy service for help because there were 25 families with high-support-needs children who desperately needed the school for their children and for their families. These children and families were certainly at risk of breaking down. What spurred me on more than ever was knowing that my son was benefitting so much from the extended learning program at the school. The program taught living skills in the appropriate setting: learning to brush your teeth must be in context; toilet training does not only take place between 9am and 3pm; after-school care with classmates and playmates is a regular part of life for children without disabilities, so why are children with disabilities excluded from that very beneficial social engagement because every afternoon the buses take them to their homes far away from each other? It was the arrival of this letter which has changed my life completely. At the time I said to my husband that I would have to leave full-time work and that my job would be to save the school from closure. The families never did get the assistance of any disability advocacy service; the families themselves advocated powerfully and successfully because they demonstrated the value that the school added to their lives and to the lives of all their children—the value to their children with disability who attended the school and the value to their siblings. Advocacy by parents and families is fundamentally irresistible because they do it from the perspective of passionate love for their sons and daughters, whether they are disabled or not. Four years ago was the first time I had ever had the opportunity, energy and capacity to look at what direction policy had taken for disability and for families caring for children with severe and profound disability. Children with disability completely lacked the same choices and options for schooling and for services which were available for children without disability. Until this time the lack of sleep had blunted any capacity for me to raise my head let alone a placard or a voice to counter what was happening. I am happy to say the school was saved in 2004 but it is now again under threat because the money given by the Federal Government was only ever emergency money and was never converted to recurrent funding. So it would seem that there is another battle that enervated families must fight for their children’s future, but they are undaunted by the prospect. Since 2004 I have devoured research, studies and reports about disability from both here and overseas. In fact this is now my preferred bedtime reading. I was part of the ‘Walk a Mile in My Shoes’ campaign which in September 2005 saw thousands of worn-out shoes representing carers laid out on the lawns of Parliament House. This was the point at which carers became even more vocal and active in pursuit of equity in the provision of services and support for their families and for the people with disability for whom they care. The personal struggle of carers has been elevated into the political arena with the Carers Alliance political party launched only a week before the Federal election was called last year. The Carers Alliance will re-launch its website in May 2008 as a resource for families to put up information about campaigns and issues that affect them directly. The Carers Alliance made a bid for a Senate seat in the Federal election. Without publicity, with little money, without high-profile celebrity candidates, and without personal profiles in major publications, in NSW alone the Carers Alliance garnered over 14,000 votes; over 25,000 votes nationally. Candidates were run in Queensland, Victoria and Western Australia. The major parties know that this is an extraordinary result given the circumstances and considering that most of the smaller parties, which have been around for a very long time, lost votes. At the 2020 Summit in April we had a carer in Canberra representing carers and people with disability. Katrina Clark was there to elevate the prospects of getting change for carers and for people with disability. On Monday 12 May 2008, the night before Budget Tuesday, 4 Corners will be airing a follow-up story to ‘The Hidden Army’, which was aired by 4 Corners in March 2005 about carers in all walks of life. The renewed interest of 4 Corners in carers was sparked by the recent public furore over the possibility of the razor being applied to the carers ‘bonus’. Carers are certainly on the agenda. We need many things to make a real difference to the lives of people with disability and their carers. Some of these are: population-based benchmark funding to meet the unmet need for services and support for people with disability across all age groups; funded carer–family advocacy at national, state and regional level; federal legislation, such as in the UK where there are three pieces of carer-specific legislation which recognise the carer role and carers’ entitlement to support and services; a national employement strategy for people with disability to seek and secure employment; and legilsation for universal access to premises. I am deeply privileged to have met parents, families and people with disability, in all parts of Australia and from all walks of life, who make an extraordinary contribution to our cause. Their resilience, ingenuity, intelligence, grace and wisdom are an inspiration. Families are at the core of our society and it is from families that so many of the ‘goods’ of society come. What carers want is a good and people recognise a good when they see it. That is what animates my activism—that, and the love for my family and for my helpless son, who cannot care for himself. Only when the ethic of care underpins our society can we care for, repair and maintain the world we live in for the benefit of all. The Carers Alliance website is at www.carers.org.au Mary Lou Carter (mother and carer) Party Secretary Carers Alliance 114 Lower Saint Georges Crescent DRUMMOYNE NSW 2047 Ph: 9819 6732 or 0425 363 421
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