For the protection of vulnerable Australians, names have been changed in the following accounts.

Mackay family raising funds for local community (20 January 2009).

“At the moment I am in a ‘catch 22 situation’. I am living with my sister following the recent death of my Mother. While I am at my sister’s home I am not able to access emergency/funding, but it is not practical or safe for me to live in my Mother’s house because it is far too large for me to maintain. At the moment I am unable to utilise my lifestyle hours outside of the home because my package is being used to enable me to travel to and from work, I would like to be able to take advantage of some of the programs that are offered in my local community but due to the circumstances I do not have enough money in my package to cover the things that I need to do; to have the same opportunities as other members of the community. I believe that every member of the community should have the right to fully participate in society without discrimination. My situation is particularly hard to understand because I am dammed if I do and dammed if I don’t. I am living with my sister in what I consider emergency housing but I cannot get more funding because my sister’s house is not considered emergency housing because she is looking after me but she is not getting any help to look after me because there is not anywhere near enough funding to cover emergency housing situations”.

“My husband Cameron and I are parents to two year old twins Rebekkah and Jane. Jane was diagnosed with Cerebral Palsy at 9mths. In everyday life this affects us some how. Whether it be eating, watching other children play, and general day to day activities. Unmet Needs for out situation would be accessibility to equipment. Jane can’t walk or stand and is only just sitting. We are on a waiting list for a standing frame. To obtain the correct bathseat took quite a long time and she has grown out of her chair, which she plays in. Another unmet need would be learning support at mainstream daycare centres. We tried our local daycare centre for one day a week. They did not have the correct high chair or play equipment for her. I endeavoured to source help through Playcare North and was quite shocked at how long it took for them to assess Jane and inturn the fact that having playcare come to the centre for Jane didn’t mean she was going to get anymore one on one then other children. Too many times Jane was left in swings and bouncers – so I pulled both children out of daycare and now we have a nanny once a week. This therefore has made it hard for me to return to work. And is expensive – but Jane is happy! We believe there should also be more funding to provide more therapy. NDT is a very beneficial form of therapy but there is not enough. We receive majority of Jane's therapy from the Cerebral Palsy League of Qld whom are very helpful – now obviously – more funding for them in this area would help there unfortunate kids who are disabled. Another service, which would help our situation, would be medically. Jane is sick a lot. Chest infections, ear infections, cold, she get high temps and can convulse. I guess help when she is sick would help. Home doctor services etc would be very helpful also. We couldn’t imagine our lives without Jane, and the Cerebral Palsy League of Qld has made this journey more bearable. They are a credit to these little people with unfortunate situations”.

“Our story begins with the birth of twin girls, Helen and Elizabeth four and a half years ago. We lived in idyllic life in the Country and Helen and Elizabeth were sister for Stephen, Russell, Jason and Louise. Both were born in Brisbane ten and a half weeks premature due to twin to twin transfusion. My partner attended antenatal classes at Country Hospital and despite showing all the signs of twin to twin transfusion doctors failed to diagnose the problem. At two years of age we decided that we had to move to Brisbane as Country offered very limited therapy for the girls. Although we did the moving ourselves it was very costly and we had extreme difficulty finding rental accommodation that we could afford. Taking the wins to therapy and into hospital on a regular basis taxed our income and I, the father, could not entertain a day job as I was needed to help with the twins and the housework. I work night shift five nights a week (sometimes seven if needed) and rely on the age pension to get by. Our 15 year old daughter Louise, is a prominent tennis junior, but is restricted to improve due to lack of finance. Elizabeth is the worst affected of the twins and the latest diagnosis is that she may never walk by herself unaided. She cannot sit or roll over by herself. She was measured for a wheelchair 12 months ago and we have just taken delivery of same. We were obliged to part fund the chair to the tune of $800 and we were forced to fundraise as we did not have that sort of money. We have carers for the girls but the hours we receive are limited do to lack of funding available to the respective organisations. We get maximum rent assistance but this does not keep pace with rising rental charges. Our home life has had to change dramatically as the twins required 24/7 attention – Elizabeth cannot hold her bottle - this has to be done for her. We will require a new van soon to accommodate the wheel chair and we just don’t have the money for that. Both girls require ongoing treatment and we envisage that our financial position will worsen as the girls get order and require more. We are extremely lucky to have two beautiful first and helpful family and we really appreciate the assistance given to us by the various organisations who do their very best with very limited funds. We just would love to be able to afford a night out or even a short holiday for the family.

“My name is Lisa and I am 55 and live at home with my parents. My mum and dad are over 75 and dad uses a walker now. Mum had a hip replacement. I only get 3 hours support per week and I am really worried about what will happen to me when my parents are not here anymore. I have CP and there are lots of things I cannot do for myself. “Where will I go”? “Who will help me to get dinner”?

“My name is Robert and I am 57 and have CP. I have a manual wheelchair but I cannot move it by myself. I need help for everything. I have a package and have carers but I can never get out. I cannot visit my mum because her house is not accessible. I feel very lonely and would not survive if not for the Cerebral Palsy League of Qld. I go to work and that is where my friends are”.

“My name is Julie. I was borne with Spina bifida on the 24th of December 1983 in NSW. I came to Brisbane when I was 16yrs old. I live with my father who is my full time carer. My father had to stop working to be my full time carer and it aspects our financial situation. I would like to be able to go places with a carer so dad can have some time by himself”.

“I live at home with my mother. If my mother was not there I would need help with the cooking, doing my hair just staying in the house with me. Also I need help with the banking and shopping. I need a carer to go out with. The vacuuming, cleaning floor I can put washing out, but I need help. I do not have a carer at the moment but I would like one”.

“I am currently living with my husband we both have cerebral palsy. I walk with a walker and my husband is in a wheelchair. We are totally independent but I work three days a week and we would appreciate if we could receive some assistance with meal preparation say 3 nights a week, we have applied in the past and we have been told that we have not been disabled enough to receive some help”.