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.
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Same thing is happening with myself and my housemates (I live in supported living) We had somebody from county hall visit us and conduct a care assessment, His sole purpose was to go around all the supported living complexes and assess people, these people mainly have learning disabilities and/or ASD. The result was that all 5 people on my complex lost a majority of their hours and now have to pay a large contribution towards their care package, i.e most of their PIP care award. I have heard stories of other services users at other properties losing most of their hours too and that social services have taken peoples individual hours and combined them into shared hours so people don’t have one-to-one hours to access the community anymore.
They didn’t cut my hours though, I am the most able on the complex but I’m on a community treatment order and have section 117 aftercare. They probably thought it would cause them lots of problems if I were to get sectioned again as a result off having my hours cut. The expense of being in an assessment treatment unit outweighs the cost of receiving community support. It is an unfair system for people not on CTO’s.
If any of the other service users with learning disabilities are there under DOLS, then isn’t taking away their 1:1 and making them share care hours, an unfair deprivation of liberty? It has to be the least restrictive option possible, doesn’t it – and if they can only go out where and when another service users also wants, then that is not the least restrictive option, when “normal” people can go out their home whenever they want?