The worst secrets are truths not shared.

It’s amazing how sometimes folks who you think should know about things, which seem second nature to you, catch you inside out. I had two such conversations recently. The first was from a care home provider who acted with shock when I said that someone assessed as requiring residential care has the right to a personal budget and to exercise choice and control over their care and support. The second conversation was from a daughter who reacted with equal befuddlement when someone asked her had she thought about the various options for controlling her mother’s budget whilst she was in a care home.

Now maybe I am being a bit disingenuous but as someone who has campaigned for and worked to raise awareness of self-directed support for nearly 20 years I am still astonished that two and a bit years after its inception so many folks do not know about the Social Care (Self Directed Support) (Scotland) Act 2013. Okay, I am not expecting folks to be experts in the minutiae of legislation but I would have hoped and imagined that this distance down the road that the basic rights and entitlements of older citizens were being advanced and promoted across Scotland. They are clearly not in every place.

The Act – and therefore that in practice means it is now a legal requirement – states that any individual assessed as requiring care and support and meeting the eligibility criteria of a local authority has the right to be offered four options as to how the budget allocated to meet their assessed and agreed outcomes should be spent. The so–called four options exist for all our citizens and many individuals have already had and are having lives transformed by being more involved in designing the support they require around their outcomes rather than having to fit into a pre-designed service or system. So choice and control has and is making a real difference to the learning disabled, to those with physical and mental health challenges, but what of the tens of thousands of older citizens?

That picture is not so clear. Undoubtedly many hundreds who live in communities are being supported to exercise choice through self-directed support and projects like our own Getting it Right For Older People are embedding their human rights at the heart of their care and support.

For those in residential care the story is less positive. Legally many of those individuals have the right to be offered control over their budget through three options, although not direct payments (option one). We have two test sites exploring the way in which all four options can be exercised. In both of these there is really interesting work going on - in East Renfrewshire and Moray - involving the local integration partnerships, providers and citizens themselves.

But what about the rest of the country? On the one hand, I hear a lot of platitudinal statements around older people and self-directed support. Folks will say – older people do not want the hassle that controlling budgets and all that that might bring. What presumptive discrimination! Who are we to limit the exercising of rights because it conflicts with our status quo systems and existing ways of working?
On the other hand, one of the challenges is the way we commission and purchase residential and nursing care home provision. Our present system is not designed to focus around the particularities of the individual – it is a one size fits all model. The reform process now underway has a real opportunity to personalise residential care commissioning and assessment. It will not be easy but it is I think necessary.

Personalisation is not just about ensuring that the services and supports that an individual care home resident receives are built around that person’s outcomes and needs. Personalisation, in the Scottish context, is about the principles of informed choice, collaboration, involvement and control. That practically means that individuals need to be individually assessed, their outcomes (unique to them) identified and then they need to be allocated a personal budget. Clearly this suggests a systemic change in the way we offer and deliver residential care. It is a task and a challenge for commissioners and for providers together. It is a process, a change, a journey that we need to work at together and with those who use services now and who will require supports. It is a journey we have delayed for too long.

The worst secrets are indeed those truths we do not speak of and tell. It is time for all of us to start talking about the rights of residents having access to the full extent and breadth of the law around self-directed support and by extension to their full human rights. It’s too important to keep it a secret.

Dr Donald Macaskill