This isn’t quite the post that I thought I would write. We’ve just been allocated a budget to pay for some personal care and respite (only 3 months short of 5 years from our initial referral for this.) Self directed support is the new way of providing social care in Scotland. The idea is that carers have control of a budget, allowing a bespoke care package to be set up that is tailored to an individual’s needs. Previously, councils would either provide the care directly or set up contracts with agencies to do this on their behalf. There are clear advantages to this approach, not least the ability to specify exactly what you want, who you want and (within reason) when you want it.
This kind of flexibility is not usually a feature of council services. For example, our local council runs a holiday programme for children with additional support needs. R’s usual allocation is 2 days in April and October and 4 in the summer. These days are allocated at the convenience of the council. If you don’t need a day – perhaps because of a family holiday – then the allocation is lost. The days are not allocated until about a week before the school holidays start, making forward planning very difficult. My usual work days are Monday, Tuesday and Thursday, so, of course, for the holiday last week, R was given Friday. I dropped R off at 9. At 10, they called to say that there was no nurse on duty due to a staffing issue and, as R had had a seizure, I would need to collect her.
Trying to extract information from social work about how to organise and administer the care that we have funding for has been difficult. The system is very new and no-one really seems to know how it works. The council worker that came to speak to me told me that we must manage the budget in such a way that sufficient funds will accrue in the account to pay for employer’s insurance, payroll services and so on in the second year. She then said that any funds in the account that had not been used by the year end (in March) would be clawed back. I pointed out that if they did do that, I would be unable to save any money in the account until after March. She looked confused and changed the subject.
On Monday I contacted a very well regarded local organisation about providing care for R. Unlike many health and care workers we have encountered, the woman that I spoke to showed empathy as I described our circumstances. (Professionalism is apparently incompatible with demonstrations of empathy. I find it strange that if, I, say, describe how R usually gets up for the day at 3am or even earlier, or that she blacks out and stops breathing, most professionals merely note this information without comment and move on. This is not normal and it’s not easy. It’s ok to acknowledge this.)
We met today. I expected to be able to write about our new respite arrangements, however, the agency worker explained that as a consequence of the introduction of self directed support, her organisation has lost its contracts with the local councils. The result is that they are able to employ far fewer staff than they have done in the past. This means in turn that they are unable to provide care to many clients when they do request it.
We are making progress towards respite, which is good news, but even with a budget in place we have some way to go yet.