First of all, get used to repeated assessments that will poke and pry and demoralise you for everything you might need, from basic benefits if you can no longer work to possibly horrendous care and support assessments. You’ll also need to jump through lots of hoops and be virtually penniless to get any help with home adaptations so expect to have to wash in the kitchen sink for the foreseeable future. Should you need a wheelchair or other mobility aids more of the same again I’m afraid.
However, let’s concentrate on social care assessments. You may be continent, but according to several local authorities we’ve had contact with, it will enhance your independence not to rely on human help to go to the loo. They believe you will be much better off with either a pack of incontinence pads, using penile sheaths or being catheterized. In other words, they argue it will make continent disabled people more independent if they sit and soil themselves, then wait for hours before someone comes to clean them up and change their clothes. Worse still, social workers seriously say this to people without falling about laughing.
During your assessment, forget all about what you can do. You will be forced, if you want any care and support provided, to concentrate on what you can’t do which can be very dismal. Then you have to go through this process every 12 months, each time dreading it because you never know when your current funding may be cut or even why. On top of that you might suddenly be asked to pay an amount towards your care which you simply can’t afford. It is perverse in England, and other parts of the UK as well, that the poorest disabled people are asked to pay most towards their care packages. Local Authorities don’t have to charge people for care and support but most do. Legally all they have to leave you with is £114 a week and now many take 90-100% of the Care Component in PIP and DLA. This is in spite of research showing that the extra cost of being disabled is £550 a month.
Recently we came across a woman who has suddenly been told she must pay £200 a week towards her care although she currently gets it free. Then there’s the woman who has been told she and her disabled partner should live in separate flats and asked to shop and cook separately. This according to her local authority is what person-centred care is meant to be.
What sort of things can social services ask you to do while they assess your care? Well unfortunately just about anything they want to.
After the Independent Living Fund closed in June 2015, when people were being re-assessed for local authority care and support funding only, we heard of many examples which could only be described as abuse of human rights and would be described as abuse in any other situation.
One woman in the North East was forced to eat while the social worker watched her to see how much help she needed to eat, and the worst case was possibly in Hounslow where the social worker wanted to come in and watch someone who is an abuse survivor both shower and go to the toilet – just to check she wasn’t lying about the level of support she needed.
Then there’s the length of time this assessment process may drag on, adding to the torturous impact on disabled people. Most recently we have one case where the assessment process has dragged on for over 18 months with the person meanwhile left with not enough support to live independently and take part in all the activities he wants to. In another case, the assessment took over 12 months and, in that case, social services tried to force the person to have a different bed and an assessment by a District Nurse.
Unless we fight for change this is not just the present for people who are now disabled but might be the future you all face one day.