The Social Care System: Part 1

In the UK, the Social Care system is split into several different categories, I believe one category is shared housing; shared housing is usually for the elderly, people with learning disabilities and physical disabilities, and sometimes learning and physical disabilities are mixed in with each other. You also have care in the home. I am unfamiliar with the shared housing categories, so I will focus on care in the home.

Care in the home is where people have carers come into their own homes to help them out with a variety of different daily living tasks, this can either be live-in care or hourly care. Live-in care is exactly what it says on the tin; a live-in carer lives with the customer and supports them to live as independently as possible. All live-in carers in the UK are required to have a two-hour break by law, so this is where hourly care comes in for me. Hourly care is used to give people that little bit of extra support if they live on their own or alone with a partner or friend, or in other cases, it is used to cover the live-in carer's breaks. Hourly carers are also limited compared to the customers needing the care, but the main problems lie with the live-in side.

I know that there is a shortage of carers anyway, especially live-in carers, but in my opinion, the worst part is the lack of live-in carers with experience with physical disabilities. I know that I've only really had experience with one agency so far, but I have contacted a few others to see if they can help me, and all but one of the companies which have come back to me predominantly cater for elderly people and people with Dementia. This is the problem I had with the first company. I completely understand that this is because most people who need live-in care are elderly, but it means that people with physical disabilities have a really tough time trying to find the right carer with the right set of skills and qualities to care for someone with high physical care needs. In my experience, most live-in carers mainly have the training to assist elderly people and people with age-related problems, rather than people with physical disabilities. The problem with this is that most carers lack knowledge of physical disabilities, so it doesn't work out. I understand that it is just impossible to train carers for every disability, disease and illness, but the current system doesn't work! You cannot lump everyone together, especially elderly people and people with physical disabilities because the care needs are usually completely different. At the moment, most of the resources surrounding live-in care are focused on the needs of the elderly... This is wrong on so many levels, and it is not only affecting me, but it's affecting a lot of other people too, including the families of people with physical disabilities.

Statistics show that Cerebral Palsy is the most common "childhood" disability, and believe it or not, children with CP grow up to be adults with CP, so I really don't understand why there are so few options for us... Even excluding all the rest of the problems surrounding adults with CP (and there are shit loads), getting a care company that has live-in carers with experience with CP is pretty much impossible, and that is wrong on so many levels!

Even my Social Worker agrees that it is likely that I'm going to continue having this problem, which doesn't give me much hope. Although you can't change it, CP is definitely not the easiest disability to handle, especially my type, because my involuntary movements make it more difficult for someone to care for me. I'm not even asking for a carer to be fully trained in CP because I know that's not possible, all I need is a carer with some experience with working with people with similar physical disabilities like CP, rather than Dementia and older people.

Yes, there is one other option, where I can recruit carers myself, but there is something bothering me about employing my own live-in carer because I've got nothing to fall back on if that doesn't work. I only know of one recruitment agency, and there are little things that don't sit right with me, such as their carers only tend to work one week on, and one week off. To me, that doesn't seem long enough to build relationships and get to know the customer. There's also the uncertainty surrounding insurance and whether I would be able to deal with the money side of it because I am only just becoming confident with managing my own money, so this is another reason why I am hesitant to down that route. However, I might have to try it if I can't get a suitable live-in carer through a care company.

To be continued in Part 2...