Risky business: the cost of human value

Sam Smith, Founder & CEO of C-Change Scotland and Small Supports partner, explores how Covid-19 has exposed the hidden costs of a system that has failed to take account of human worth.

This blog started with a short conversation on twitter discussing the obvious health risks associated with congregate living settings during a global pandemic. These risks have been highlighted in recent articles (Nursing homes must be made a thing of the past and Care homes across globe in spotlight over Covid-19 death rates).

The question asked was whether risks were even greater when supporting someone in their own home, ‘would that not mean lots of people going in and out of lots of people’s homes?’ I responded stating not necessarily so.

I have to declare an interest, I am the Founder and CEO of C-Change Scotland, an organisation that has supported people, assigned extreme reputations, to live in their own homes or in their family homes for over 19 years. The organisation supports people to live where they want and with whom they want. Every person the organisation works with is assisted to recruit their own team, to help them exercise their human rights and live their good life.

I was a Commissioner involved in the closure of long-stay institutions before setting up C-Change. I was well versed in the argument that community living was fine for some, but not for those for whom it was assumed it would be too expensive, for them to live full, productive lives in the community. For this reason, C-Change is committed to supporting people at no greater financial cost to the state, than segregated institutional services. The organisation is not alone in this commitment, there are a range of smaller not for profit organisations committed to these same ideals. However, this way of working has not gained the momentum one might have expected.

Now, a global pandemic is marching across the land, stress testing a social care system already riven with fissures. The system has, unsurprisingly, been found wanting. Not the people who work hard to provide care and support without adequate protection, for very little money, and who, until recently, had been regarded as unskilled. No, the structural fault lines run far deeper and are based on a skewed perception of risk and limited process for counting real costs.

Covid-19 has exposed the hidden costs of a system that has failed to take account of human worth. This system is based upon several fallacies.

The first is that social care is necessarily beneficial or at the very least benign. This view fails to recognise the tremendous cost paid by people who require support and their families, when they engage with ‘serviceland’. One need only read first person accounts of those who use services, families of young disabled children, disabled adults, carers of older family members, to recognise the repeated use of war analogies. Individuals, families and carers describe entering a labyrinthine system and undergoing battles with bureaucracy that often left them feeling wounded. Some, though desperate for help, retreat vowing never to return. Others describe feeling colonised, being taken over, losing control and personal agency.

The second fallacy is the real cost of social care. An underfunded residential and nursing home sector propped up by private fee-paying residents, has been used as a lever to curtail independent living. It has been used to provide a notional financial ‘cap’ on what funders are willing to pay citizens to enable them to remain in their homes and communities. What Covid-19 has cruelly illustrated is that there are some risks and costs that cannot be accounted for on the bottom line of a budget balance sheet.

These are the risks that are carried by our fellow citizens, those who use social care and also by those working so hard to provide that support. These social care costs are harder to quantify but we know them when we see them and we can feel the burning injustice of that burden.

So, going back to the answer I gave as to why supporting people in their home does not increase the risks during Covid-19, here’s how individual teams supporting people manage.

Teams worked out with the person they support and their family, if they are involved, what made sense in their situation. They each came up with plans about how to look after each other, reduce risks and stay safe. They recognised that they were potential agents of infection and that support is not benign. Some teams changed working patterns to reduce the frequency of people going into the persons home. Others provided some aspects of support remotely. This approach enabled people to rise to the challenge that this terrible virus has presented them. For illustration, here is one small example.

S is an autistic man in his early forties, he had a significant reputation. At one point a whole ‘special’ congregate living arrangement was designed around ‘managing’ him. This broke down and he was readmitted to an ATU. This pattern had repeated many times. Each time his reputation grew.

S has lived in his own home with his team providing individual 1:1 support, that makes sense to him, for over 10 years. He has relationships with his team members based on knowledge and trust. They know him, he feels safe, he has flourished. His reputation is now of a gentleman with a kind heart and wicked sense of humour. A man of faith and of principle.

One of his Team developed symptoms of Covid-19. S and the team needed to go to the local testing centre at the main airport, 20 miles away. S and his team member rehearsed the plan. The team member would get tested, S would get tested. All went to plan, not an issue. A massive non-event to celebrate in the ordinariness of these extraordinary times. But an important landmark to recognise how far S has travelled, with the right support, with respect, with people who know and genuinely care for him.

Where does this life well lived figure of the balance sheet? Where does the risk of not living a fulfilled life, where you contribute as much as you receive, get captured in current risk assessment processes?

We need to recognise that for every decision made, there is a shadow risk that may not be being recognised and accounted for. It is these risks that are often borne by those who use services and their families. Social care is not benign, accessing it comes at considerable cost to people who use services and we ignore these risks and costs at our peril.

We need to move on from the tired old rhetoric that we cannot afford to do better. We cannot, in human and financial terms, risk continuing to do more of the same.

Sam Smith is Founder & CEO of C-Change Scotland, and a partner in the Small Supports programme with NDTi, Beyond Limits and Positive Support for You.

You can find C-Change Scotland on Twitter and Facebook.