Self-directed Support – less choice, more stress

My wee family’s brief foray into local Self-Directed Support (SDS) services was just that – brief.

We were persuaded to consider a small package of social care in preparation for a time when we might need more. We agreed and our supportive Occupational Therapist came out with a council official to start the process.

It didn’t go beyond the initial meeting as three things were evidently wrong in implementation:

Firstly, the official was quick to point out that as I had “chosen” to be a full-time carer for my husband, any care package offered would be cut significantly with a “carer deflator”.

Secondly, the SDS assessment was not remotely fit for purpose. Focused solely on mental capacity and risk, it wasn’t outcomes or “rights-based”.

Thirdly, at no point was I offered a Carers Assessment. It’s not that I particularly wanted one (like most carers, I pretty much think it’s a waste of time) but my needs as a carer were never fully acknowledged.

It appears that our experience isn’t isolated. In my local area, carers are worried about the roll out of SDS. There is talk of valued services such as day centres closing, as direct payments are likely to be insufficient to buy back these services.

The reality of SDS is that, rather than being transformative, it can leave families struggling with less choice and poorer outcomes.  And some of the issues outlined above are picked up well by the ALLIANCE’s recently published study “Personal experiences of Self-directed Support”.

It’s encouraging that some of the study respondents appear to have a positive tale to tell and have been able to use their budgets to do a range of things – social, recreational activities and accessing respite. We need to see more of this.

However, for so many others, the intended transformation of social care through SDS has never really happened.  If anything, its roll out has often created more stress with families left on their own once a package is awarded.

For others there is a lack of choice and control, as risk-averse officials can limit families’ ability to choose what they purchase with a direct payment – even where the intended expenditure would clearly lead to a more positive outcome.

What is more, over a quarter of those involved in the ALLIANCE’s study had to wait over a year before their SDS packages were put in place with lengthy waits even to make it into the assessment phase. It’s also deeply concerning that over 50 per cent of respondents don’t have enough hours to meet their needs through SDS.

And then, the icing on the cake; annual reviews which are used as a guise to cut already established support packages, leaving carers to fill the gap and provide care for more than 100 hours per week without support.

Lastly, whilst political parties have promised to protect family incomes during this general election campaign, none of them mention the devastating impact of the Care Tax. With inflation busting increases, family incomes are sucked dry. And yet, care services are not “add-ons” that can be stopped when money is tight.

This is the brave new world of Self-Directed Support and the ALLIANCE’s work provides our decision makers with a chance to reflect on people’s experience to date and identify “the good, the bad and the ugly” of its implementation.

Our fractured social care system is also very evident in this work and I commend the ALLIANCE for taking this wider view. As the report outlines, where we go next is critical and alongside the ALLIANCE, I “..encourage the Scottish Government and local authorities to acknowledge the issues with SDS funding …as part of a wider national conversation about the future of social care and SDS”.

Care and support are necessary for key basic human rights – if we do nothing, we risk isolating families further, and reduce their social and economic contribution.  That’s simply unacceptable in 21st Century Scotland.