I have cerebral palsy and scoliosis (curvature of the spine) which means I am a wheelchair user and need support for any type of movement. I’ve had a support package for the past ten years. I have a 24/7 support package funded by City of Edinburgh Council, with top-up funding from the Independent Living Fund which covers overnight care. I use a care provider to employ my personal assistants but I interview and choose them myself. They help with personal care, housework, cooking, help to get to and from my volunteer work and social events, everything involved in living my life. I do feel the amount the provider pays my carers could be improved – it can make it difficult to keep staff as people will obviously look for the best rate of pay for the job they do.
Having enough support, and flexible support, keeps me in good physical health and lets me maintain my friendships. It means that my relationship with my parents is ‘mum and dad and daughter’, rather than ‘carers and cared for’. I contribute to society through volunteering, which is preparing me to move towards paid work. I feel valued.
I’ve got the support I need, but I see others who don’t have what they need and I often think, ‘they could do with a bit of what I have.’
I do have good peer support from groups of disabled people and from Lothian Centre for Inclusive Living, where I have volunteered for the last five years, as an associate trainer and speaking to people about disability in my role as an LCiL Champion.
Peer support means that I have stable mental health and a sense of belonging – there are people I can trust and who know what being a disabled person is like. Being a Champion helps me know that my experiences aren’t for nothing – I can use them to help others and to make improvements in the way things are done.
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