Just Connie’s Year #26 : Invitations & Independent Payment

26th January 1997

I slept until 6am when Mummy got up with me. I feel a lot better today! I have found a new game today – I put an item of clothing over my head or face and then Mummy shouts “Where are you?” and I pull it off! Francis and Sarah came for tea!

26th January 2017

I was so excited to come home from college this afternoon and have TWO invitations waiting for me! I love being invited to things and going to parties. Jordan helped me open them and read them out to me. I’ve been invited, with my family, to Melissa’s 18th birthday party and to Jess’ 21st birthday party! I am already asking where they are and what I can wear! Jess is my cousin Ryan’s girlfriend who I always wave to in town when I see her and and Melissa is a family friend who lives up the street and I have known her since she was born so I am so excited to go to both! It was dance class tonight and Mum took me out for my tea before with my friend Chloe who also goes to dance class and her mum. We went to Sainsburys cafe for tea and then had lots of fun dancing … I was shattered by the time I got home!

26th January 2017 (Mum’s Perspective)

Today the letter arrived for Connie to start the move from receiving Disability Living Allowance (DLA) to getting Personal Independent Payment (PIP). This is going to mean a lot of phonecalls, a lot of filling in paperwork and a face-to-face assessment of Connie. The move to PIP means that Connie could receive more help but it could mean that she receives less … we are hoping it won’t be the latter. I am in charge of Connie’s finances and all her paperwork as she has no ability to understand anything to do with them yet we are often asked to prove that she is unable to understand. People constantly demand to speak to Connie on the phone for her to give them permission to discuss her details and they sometimes demand to see her in person to discuss things – it is very frustrating and they quickly realise the error of their ways when I do put the phone to Connie who really doesn’t like being on phonecalls and finds it all very stressful and upsetting. Even with Connie’s notes in front of them they do not understand how severe her disabilites are and it often gets me very mad! Hopefully this next set of paperwork and meetings won’t cause too much stress for us all … fingers crossed! 


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