Learning Disability Coalition
James' story
I live in my own specially adapted bungalow, where I have been living independently for two years. I need 24/7 support because of my severe disabilities. I get this support through a combination of agency support workers and my Mum, which I pay for with my individual budget. These support services are very important to me so that I can live independently from my Mum and Dad. Before I began to receive these services my Mum was my primary carer for 25 years and my needs were so demanding that she could not get a job. Now she only does some of the caring and is able to work part-time.
I keep in close contact with my family and friends and my Mum still visits me regularly. The care that I receive means that I am able to undertake a variety of different activities which I really enjoy, such as going to the park and to my local Sensory Centre. I have very complex needs, and am on a variety of different medicines. Sometimes I become ill and require additional care and support. My support workers are very helpful in providing support both inside and outside of my home, and in responding to my changing needs. The support I get to live in my bungalow has allowed me to live a fulfilling and independent life. It has also given my parents a greater degree of independence and peace of mind.
James’ Week
Monday
My mum woke me up this morning, and supported me to have a shower, get dressed and get into my wheelchair, ready for breakfast. I helped my mum to prepare my breakfast. My mum also supported me to take out the recycling.
After this, the minibus and escort, Joyce, arrived to take me to my day centre. Joyce pushed my wheelchair to the bus and stayed with me whilst the tail lift lifted me onto the bus. In the day centre, I have two care assistants, Jo and Sarah, who took me to the bathroom to attend to my personal hygiene. Afterwards, I took part in music therapy and some stretching exercises. At the end of the day, Jo and Sarah put me in my hip speak and hoisted me onto the bus which took me home.
When I arrived home, my next support worker, Wayne, was waiting for me outside. He then fed me and gave me my medication and a drink. After watching the Music Channel Wayne helped me shower and took me to bed at 9pm.
Tuesday
Wayne, my sleep-in support worker, came in at 7.15am to wake me up, wash, dress and shave me. He put me into my hip speak and assisted me with making my breakfast and doing my laundry before I went to the day centre with Joyce. At the day care centre my care assistants Michael and Jo took me to do some gardening and Jo hoisted me onto an exercise mat to do gentle exercises which help the stiffness I have in my joints. My day care officer also supported me to attend the service users meeting to discuss what we though should be done in the day care centre.
When I returned home my support worker June gave me a drink and helped me get ready to visit my parent’s home for my Dad’s birthday. June took me to my parent’s house where I joined in with a family meal and birthday cake. Mum had helped me to choose and wrap some presents, and my sister helped me to give Dad his presents and card. I watched Dad open his presents and was very happy. June then took me home, showered me and cleaned my teeth and took me to bed at 10pm.
Wednesday
I was very upset and distressed when June woke me up this morning. I wouldn’t eat my breakfast or take my medication. June had to call my Mum to come and see me, and she discovered that I had a wisdom tooth coming through. Mum gave me some pain relief, and after that I felt much better.
Mum and June took me to the day centre where I had a quiet day because I was still feeling quite ill. When I came home, Mum and I went into the garden to sit in the sunshine, and she helped me to re-order my medication and incontinence aids. I went to bed very early as I was tired, and Mum stayed with me throughout the night.
Thursday
My mum woke me up today, washed and dressed me and fed me my breakfast and medication. My support worker Joyce then took me to Worester Snozelen, which is a multi-sensory centre which helps me to explore the world around me in my own way. My favourite activity is the Star Tunnel, which is a completely dark room with lots of sensory things, like stars and lights. My care worker Jo supported me to explore the Star Tunnel, before I went back to the day centre where she attended to my personal care and fed me lunch.
I then returned home, and my support worker, Silunduire, fed me and gave me my medication, and then took me for a walk around the local area. She then supported me in watering the plants, showered me and cleaned my teeth and hoisted me into bed.
Friday
Silinduire, my support worker woke me up this morning. She washed and dressed me, stripped and made my bed and gave me my breakfast and medication. My escort, Joyce then pushed me to the bus where I was taken to the day care centre. Whilst there my support workers Jo and Michael tended to my personal care and then took me to the pub for lunch.
This afternoon my support worker, John, and I went to the local park for a picnic. He prepared my tea and drove us there. When we arrived, John got me out of the car and supported me to feed the ducks and pushed me around the park. After he had fed me my tea and medication, we went home, where John supported me to have a shower and got me ready for bed.
Saturday
John and I spent the day exploring a sensory garden, and going for a walk along the local canal to watch the barges. When we returned home my new support worker, Jono, was waiting for us. Today was the first time that Jono had supported me by himself. My care is very complicated, so Jono has had a lot of training to make sure he knows how to look after me properly.
June came in to make sure that Jono fed me properly and gave me my medication. He showered me and got me ready for bed. June made sure that Jono hoisted me into bed correctly before she left.
Sunday
Jono woke me up at 8.15am, and he washed and shaved me, and then hoisted me into my wheelchair. June my next support worker arrived and shadowed Jono feeding me my breakfast and giving me my medication. June helped me to get ready to go out, and then took me to my local church, where I met up with some friends.
June supported me to take part in the family service – I really enjoyed the singing! After the service, we all went into the hall for a chat and a cup of tea. I had a lot of fun, and met some more new people. June then took me home and dealt with my personal care. She then took me to Arrow Valley Park and pushed me round the craft stores, fair and water games. June then took me home, and my next support worker Paul watched the football with me, then hoisted me into the shower and took me to bed.
