I live in Suffolk in a group home. My parents live fairly close and I see them regularly. I am a sociable and happy person but I need 1:1 support to do a lot of things. On weekdays I have dedicated personal assistants to enable me to have an active life which includes swimming, sailing and accessing the community. I have a genetic condition called Angelman Syndrome with associated physical and profound learning disability.
I was born in Yorkshire. I was induced as I was overdue but otherwise it was a normal birth and no indication then that I had disabilities. However, soon after I came home it became obvious that something was not right as I was feeding and sleeping badly and losing weight.
My Mum was very unhappy because of this which was made worse because she was isolated and away from our families in Suffolk. Also, she was receiving poor support from the system.
My Dad changed his job and we moved to Suffolk, to be much nearer our families. We flew to Philadelphia, USA for a week to visit the Institutes for the Development of Human Potential and afterwards we carried out their programme for a year which involved me being “patterned” to crawl by a team of volunteers and doing lots of physical and mental exercises. I started to walk on my own aged 4.
We moved again in Suffolk to be in the catchment area of the Special School which my parents chose for me. It was close enough so I could walk there every day with my Mum. Although my parents went for genetic counselling it took a long time for them to consider whether to have another child. My brother was born when I was 7.
We moved again because special education was subsequently reorganised and I did not need to live in the school catchment so we decided it would be better for us to live near a park where I could go for walks more easily. This meant I had to go to and from school in a taxi which was very inflexible and my Mum and brother had to rush back from his school to get back in time which meant he could not walk home with his friends.
When I was 10 my sister was born, my parents had been for the latest genetic counselling. I spent lots of time with my family on holiday and in beach huts especially when I was young and I loved being in the sea. As I got older, I went for respite care regularly. I received Mobility Allowance when I was about 12, this enabled my Mum to have her own car which improved the quality of life for all of us.
I lived with my family in Suffolk until I was 17. There were other care issues in the family so I moved to a group home and I continued to see my family regularly at weekends and stayed with them at bank holidays. My Dad changed his job to agency/self employed to give him more flexibility to look after me and the family and my Mum started working part time. I continued at school until I was 19 and then moved into Day Services run by Suffolk CC. Because of my complex disabilities I did not fit into a normal day unit and so I went on tour which was not very satisfactory. Eventually I settled at a local day unit, I was assessed and funded for a 1:1 personal assistant there.
I continued to live my group home, which was very supportive. I continued to attend a day unit which moved a few times. My service at the day unit deteriorated as my 1:1 personal assistant support became diluted because of sickness and holidays by others. So when I was 29 I started using Direct Payments to fund 2 days/week of my day service, this required a trust to be set up. I employed a Personal Assistant who continued to work with me for the next 7 years with the emphasis on my mobility. When I was about 33 my Direct Payments service was extended to a full 5 days/week and I had several personal assistants.
When I was aged 36 my group home status was changed to Supported Living with associated financial and staffing changes. At that time the Professional Deputy Service (PDS) started to look after my financial affairs and have continued to offer an excellent service.