My name is Ruth den Brinker my husband Peter and I have five children. The four older ones are married with their own young families.

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1 Good afternoon. My name is Ruth den Brinker my husband Peter and I have five children. The four older ones are married with their own young families. Our youngest son, Jon who is now 32 is severely disabled and requires considerable care. The daughter of two teachers I have always been interested in education. On completion of my Nursing training in 1967 it was my goal to continue my education and lecture in nursing. After Jon was born I returned to work and study part time. When Jon was nearly 3 he developed a mild cold. For our family, that mild illness turned out to be the end of the road called normal. He developed extreme and varied epileptic seizure which left him brain damaged and partially paralysed. I dropped out of University. Jon s care needs were intense. At 6 he underwent a Temporal Lobectomy in the hope that the epilepsy could be resolved. He left hospital unable to walk or weight-bear meaning he required lifting and required a wheelchair Page 1 of 6

2 for mobility. Early onset puberty meant that by seven Jon was nearly my height and weight. His seizures could be as frequent as 1 2 minutes apart and go on for days or even weeks at a time. Our other children became junior carers. Our family of five could not survive on a single income. I began to work casually in nursing homes, at weekends, Easter, Christmas, New Year and other public holidays. My husband and older children cared for Jon when I worked. We rarely spent time together as a family. By now any thought I had of a career had gone out the window. When Jon was 11, he underwent a Hemispherectomy, or removal of the affected half of his brain to control his epilepsy. As his situation slowly improved, I returned to part time study. In 1993 I enrolled at RMIT. I spent 1 day each week, not as mum or a carer but just me, developing a group of friends and thoroughly enjoying myself. I had a sense of freedom and as a fellow student, not a carer of a disabled son, enjoyed a different identity and equality. This was a most Page 2 of 6

3 enjoyable time for me. There was certain envy however, when other students were involved in planning out their futures. My future was a dayto-day proposition. In 1998 I finally completed my Masters Degree my interest was in Gerontology. In the interim, Jon s condition had improved to the extent he was able to attend his day program more predictably and he had also qualified for some funding which is now known as HomeFirst. This paid for a care worker morning and afternoon so I could go to work full-time. I had sustained considerable physical damage caring for Jon. Nursing was no longer possible. My employment options were limited. At the youthful age of 49 (any career goals in complete tatters) I ventured into the workforce as a Case Manager. My learning curve was vertical, as I mastered computers, pagers and mobile phones. My lucky break came in the form of a supportive manager. And work which could occasionally accommodate my need to be flexible. With a great deal Page 3 of 6

4 of juggling and support from our other children I was able to stay in that job for nearly 7 years. On paper, my Jon had quite substantial packages of support over the past few years. But it has been marred by a lack of coordination, lack of reliability, and at times we feared for Jon s safety. The stress this has caused means that in spite of going part-time, I have had to resign from two jobs that I loved. My first priority was Jon s wellbeing. Phone calls while I was at work telling me that there was no worker with Jon, or arriving home to find Jon had been left at an empty house, created constant stress. Services were regularly terminated at a day s notice, created insecurity. So I worked in a series of jobs, leaving when care workers and services let us down. Working in Jobs rather than as a professional I was often supervised by people who were far less qualified which I found quite demoralizing. My self-esteem suffered because I couldn t maintain regular employment. Our society values people according to what they do. I had no hope of promotion, no career structure and no pay increases. Financial stress was Page 4 of 6

5 a constant issue. Our children have always accepted that sometimes gifts at Christmas were tokens of our love. I have many emotions around the issue of work; Guilt at being selfish enough to even want to have a life apart from caring. Work provided a group of friends, social interaction, and a life outside caring, which I value enormously. There is also a feeling of loss because I couldn t achieve my goals, even though the reasons why were beyond my control. The disadvantage experienced by carers is not limited to women. My husband was offered jobs in other areas and interstate, which he was unable to consider due Jon s need to be close to the Specialists and Hospital. He too experienced the situation of not being able to climb the ladder. Although as a migrant, he worked very hard to complete four Masters Degrees and had to sacrifice time with the family to ensure our security. When carers retire willingly or unwillingly, there is no superannuation nest egg. We would like to travel, a reward a lifetime of hard work but this is difficult. Page 5 of 6

6 At nearly 65, I have to be realistic and accept that my chances are gone. But I can share our story to work for change for the younger families. Page 6 of 6