There is a ‘Little Britain’ sketch that stands out for me and it is the one of the computer saying no, because it so cleverly and clearly explains what it can feel like for a customer/patient/user to be confronted with a job worth system. I feel the biggest reason most people make a complaint or become frustrated is not necessarily the decision that has been made, but rather that the decision has not been properly explained to them in a manner they understand.
One of my biggest criticisms of the way social care currently works, and where there is a conflict with the principles of independent living, is its distaste for leisure activities. When social workers seemed focused on the basics of keeping people alive and healthy, leisure is frowned upon as a luxury only available to those who are creative enough with their personal budgets, particularly also only for people with learning difficulties.
The first thing I learnt having a significant life long impairment is that to succeed in the world as a credible disability consultant and activist is that I had to do things differently to make the most of my situation. Time, energy and of course money are the three things in my life I never have enough of and therefore I have needed to find often creative ways to use these resources as effectively as I can.
While everyone wants to believe providing social care is giving service users what they need and ideally want, sometimes limited resources and other factors will mean that social workers may have to look at needing to cut people’s level of support in the name of fairness. Many disabled people fear, but not including myself, that the Independent Living Fund’s transfer to local authority control will result in a major cut of the support they will receive, including the possibility of being put into residential care.
It is assumed by most people that the hard part of getting social care is the assessment process, fighting for what you need and then obtaining it in terms of a specific number of hours from a care agency, or having the cash equivalent as a direct payment to employ your own personal assistants, but I would like to suggest that is the easy part. The hard part is actually what you are going to do with the hours you have to make the most of them.
Do we limit the expectations of service users from our own ideas of what they are capable of?