Jessica was born in 1981. Because Down Syndrome is identified at birth, I knew our future was going to be bleak. All the same, Jessica was much loved from that moment and I knew, no matter what, she was always going to be part of my family.

Jessica (28) has been raised by a single mother who has no relatives in Australia.

Once, a lady told me that God had sent me this angel from heaven so I could look after her here on earth and He had chosen me to do that. I believed her.

Jessica has a younger sister, Natalie, who has had to mature at a very early age. Having a disabled sister made her feel very responsible and during the school holidays she undertook to look after her big sister when I had to go to work. This was because she knew there was no one else. Growing up wasn’t easy for Natalie and I know that sometimes she felt left out because most of my time and attention was on Jessica. I wish I could compensate her for this.

Life as a single mum without a family support network has not been easy. I had to give up work for many years to raise my children. When the children started school I had to accept jobs that were not to my liking but at least we had a little extra money that was much needed. Holidays in our household were very rare because of our limited income.

I always had to work part time as I had to be home before Jessica arrived from school. Then when she started work in supported employment, I would drive her to and from work. Because of this my chance of employment has always been limited. Nevertheless, I am always updating my skills and I am always studying something. I need to be busy in order to keep my sanity.

Jessica, with supervision, is independent at home and she knows her household and its surroundings well. However, she would be lost going out in the community by herself, so I always have to chauffeur and accompany her everywhere she goes. This means I have little or no time for myself. For security and safety reasons, I never leave Jessica alone in the house so I have to take her with me wherever I go.

I am worried about Jessica’s future, where is she going to live and with whom. I am growing older and I don’t have any relatives in this country. I would like to see Jessica settled and living with people that she knows and feels secure with. She is very shy and does not feel comfortable among strangers. She would be very unhappy to live in an environment that she doesn’t know.

It is imperative that the Government understands the anguish of parents not knowing what the future of our children is going to be once we are not here to look after them and not knowing where are they going to go. I would like Jessica to stay in the Ryde community living with her friends, close to the family home and in the area she has lived all her life.