I have been assessed as needing support to meet all 10 outcomes of the Care Act eligibility criteria – and up until March this year, I was receiving a care package of 24 hours per week. This was split into 15 hours support from a personal assistant, to help with personal care, parenting and meal preparation, six hours for accessing the community, and three hours of domestic support.
In December 2018, I was told my support package was to be cut by seven hours. The council said my needs could be met by the new support package and that, while historically people were given more generous packages, now ‘social workers have to use the Care Act’. That’s a load of rubbish because my last assessment in 2017 was done under the Care Act and I got 24 hours a week.
My needs haven’t changed, but the ‘decrease in need’ box was ticked on the assessment this time.
‘I could do the things others took for granted’
Under my previous package, I was able to use the six hours’ community support to go into town with my personal assistant and buy fresh food and any items we needed for the house, and on a Friday afternoon we would go somewhere nice together to walk my assistance dog.
There are very few places locally that I can exercise my dog off the lead and I’m supposed to do that a couple of times a week, as per my agreement with the charity who provided him. Walking him is freedom, it’s getting out in the fresh air, seeing new people and not being trapped in the house. He loves it and I love it. I can get out, be me, and do the things that other people take for granted.
But now my care package has been cut, I won’t be able to do this anymore.
There are still six hours allocated to community support in the new package, but I will have to use this time to meet my other needs, including taking my children to medical appointments. I calculated that last year my kids had 24 medical appointments between them, lasting an average of two and a half hours each, so that is 10 weeks in a year of me not accessing the community.
I’d also have to give up something else to be able to walk the dog – go without a bath one day or not buy fresh food, which I have to do because I’m on a low histamine diet due to an intolerance.
‘It makes me feel pathetic’
The council is crippling me by taking away this support; they are making me more disabled. Before, I had a choice and an opportunity that I was making the most of, and now they are taking that away. I see people I went to school with working all over the world and travelling to foreign holidays, and I can only go a mile away from home in my power chair, it makes me feel pathetic.
I know it’s wrong and I know the council is breaching the Care Act but they won’t listen to me. They have to cut my budget to meet their own budget, but they won’t admit that. Properly funded social care can make the world of difference. It has helped me improve my physical and mental health and be more confident, but these cuts will physically and mentally cripple me.
Tom’s name has been changed. He spoke to Rachel Carter as part of a Community Care investigation into cuts to social support.