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Carer's Stories

THE FIGHT

Here is the story of 'THE FIGHT' for permanent accommodation for my daughter. I am fifty five years of age and Sally is twenty nine the youngest of my three children. I am Sally's sole carer as her father died eight years ago after a short battle with cancer.

Sally was diagnosed with an Intellectual Disability, Hypertonia and mild Spina Bifida in her early childhood years. As she has grown older she has developed Epilepsy, curvature of her spine, and has had both her hips replaced. Sally's disability means that she is unable to read or write, has no money handling skills, cannot tell the time, cannot read a calendar, cannot use a telephone, cannot travel independently and cannot prepare a meal. She needs assistance with personal hygiene, dressing, brushing her hair and teeth, medication, cleaning the house, doing laundry, using a microwave, and choosing clothes appropriate for the weather. Sally has no awareness of stranger danger; she lacks confidence and initiative and requires prompting and support in all aspects of her everyday life. Sally is extremely routine oriented and when that routine is interrupted she becomes confused, agitated, disoriented and emotionally upset.

It has always been my goal and dream that Sally be given the opportunity to live independently of me, in shared accommodation with other people like herself where she would be able to have the care, support and companionship she requires. This became an even higher priority when her father died after an illness of only fifteen months. As a result I have spent many hours, days and weeks over the last eight years attempting to access permanent shared accommodation for Sally all to no avail. I have tried again and again with the Department of Human Services and always end up waiting and waiting for a case manager who offer nothing except to be put on another list to wait. I have approached many Non-Government Organizations but without a funding package they also offer nothing except another waiting list. I do not see this goal/dream as any different as those I had for my other children where I was able to plan for them to move out of home supporting them through the transition to become more independent. Yet it is proving to be so much harder as the current system is unable to offer us access to accommodation unless Sally is experiencing a health crisis, family breakdown, my death or if I am prepared to make the decision to relinquish care of Sally.

Earlier this year I did manage to organise an opportunity for Sally to experience independent living. This was accomplished by her sharing her home with another person with a disability who was much higher functioning. Sally relied on this person to assist her with her daily routine and if there were any emergencies she was able to respond quickly and communicate this to family and support people. Sally was also reliant on some short term funding that was used to provide support staff in the home for a few hours a week. Unfortunately after only three months the person who was sharing Sally's home moved out into shared accommodation after only waiting on the Disability Support Register for three weeks. As a result Sally's ability to live on her own has become untenable and has placed her at significant risk of harm. When this person was offered supported accommodation there was neither communication nor consultation with Sally or me as to how Sally would be able to cope living without this person. Staff from the Department of Human Services have suggested that Sally move into Aged Care to enable her to be seen as a higher priority for supported accommodation. I feel this suggestion is inappropriate as it will cause Sally social and emotional isolation from her peers; it is also extremely costly and will negatively affect her quality of life.

My life has been consumed by my efforts to find the best support and care for Sally and due to the ongoing stress of this situation my physical and mental health is deteriorating. I am seeing a Psychologist on a regular basis and am suffering from high blood pressure. My relationship with Sally is at the point of breaking down and I feel that I have no other choice than to consider making the heartbreaking choice to relinquish care of Sally. I have thought long and hard about taking this course of action but I sincerely believe that Sally would thrive if given the opportunity to live in a supported living situation with her peers and receiving the support and care that she requires.