Why We Should All Care

Since his first day in Number 10, Prime Minister Boris Johnson has been promising a plan to reform our ailing social care system. It’s something that successive governments have been promising for at least a decade, but so far, no workable proposals have been put forward.

Almost every time social care gets mentioned by politicians or in the media, the focus is on older people, and while they make up the majority of social care users, another group, disabled people under 65, also make up a significant proportion of the total.

Image shows a digital drawing by Touretteshero. It is an illustration of a pie chart split in three with the message surrounding pie chart that says ‘1/3 of adult Social Care Users are aged 18 - 64’. The segment at the top contains an illustration of Touretteshero in the foreground with Erik and Leftwing Idiot standing behind her to her left and Claire and Bovie who are standing to her right. Touretteshero is smiling with her hands placed on the wheels of her wheelchair and is wearing a navy hoodie with rainbow drawstrings and colourful striped magenta, red and yellow socks. Erik is wearing a blue hoody and black trousers, Leftwing Idiot is wearing a white t-shirt and navy shorts, Claire is wearing lilac trousers and a mushroom coloured jumper and Movie is wearing a colourful patterned purple shin length cap sleeved dress. In the bottom left segment of the pie chart, there is an illustration of an elderly woman sitting in a recliner chair. She is smiling wearing a magenta jumper and white trousers. A walking stick hangs on her chair. Standing behind her are two support workers dressed in purple uniforms. In the final 1/3 of the pie chart on the bottom right is an elderly man standing with a yellow walker with 3 social workers stood behind him.

Disabled adults between 18 and 65 make up one third of social care users, but when it comes to social care policy, they definitely doesn’t get one third of the attention.

I suspect the main reason for this is that decisionmakers are more likely to have encountered social care via their elderly relatives than via the access requirements of younger disabled people.

I also imagine that when thinking about their voters, politicians are more likely to consider older people. This could be because younger disabled people are massively underrepresented in parliament, in the media and in most work-places.

But if we’re going to build an effective and fair social care system, it’s essential that we take into account the differing circumstances and requirements of people at all stages of their lives.

The current bias towards older people means that:

3,000 working-age disabled adults are living in care homes for older people because of a lack of services that meet their requirements
• Younger disabled people aren’t permitted to save more that £14,000. Above that they have to pay for some or all of their care – that means things like saving for a house, a wedding or a child are nearly impossible
1.4 million people provide over 50 hours of unpaid care every week. Anecdotally, this can have a direct impact on those carers’ lives, as well as meaning that those receiving free care have very little choice over who supports them.
• There may be as many as 800,000 young carers in England alone, and what little research that’s been done in recent years shows that the authorities often see disabled parents as a risk to their children, rather than providing them with the support that enables them to parent their children.
• Many younger disabled people live in fear of being taken from their homes and ‘warehoused’. In recent years local authorities and Clinical Commissioning Groups have introduced rules that mean disabled people can be forced into residential care if it’s cheaper than supporting them to live independently at home.

My independence often feels precarious, not because of my body or brain, but because my life, and the support I receive to live it, is dependent on the decisions of non-disabled people who have never met me.

Social care that only focuses on elderly people works on the assumption that those who receive it have had careers and the opportunity to build up assets, and not that they may be at the start of their journey through adult life.

Every time a new social care policy is introduced I worry that I’ll be forced to choose between living my life and keeping my home.

We already know what ‘independent living’ should look like – good practice in social care had begun to emerge just before the 2008 financial crash. But the onslaught of austerity put an end to that and stripped many disabled people of vital support, costing many their lives.

I’m sure Boris will be quick to tell us that social care costs are rising, but he’s unlikely to mention that we’re spending less on social care today than we were in 2010.

Social care funding isn’t money disabled and older people can spend however they like, it’s what enables us to employ others to meet our requirements to live. So, not only is social care enabling older and disabled people to safely participate in community life, it’s also creating a huge number of jobs.

In England there are estimated to be 1.62 million adult social care jobs. Investing in social care isn’t just about meeting the needs of those with care requirements. It should also be about valuing the skills of all those employed in the sector. This is money that’ll go back into the economy through individual spending and tax.

As we emerge from the COVID-19 crisis, there’s a unique opportunity to reinstate good practice, allow space for innovation, and develop holistic, humane social care systems that support people throughout their lives and provide fulfilling jobs and career paths.

My fear though is that this opportunity will be squandered because of short-sighted, simplistic thinking, and through a deliberate misunderstanding of the role that social care plays in people’s lives.

To Boris Johnson, and all those responsible for the future of social care, is, include the requirements of disabled people who are not old and make sure we’re not forgotten in your public statements and policy decisions.

To everyone working in social care, from social workers, to agency managers, to the amazing support workers and personal assistants that allow me and many others to lead active, fulfilled, independent, safe lives, I want to say a heartfelt thank you.

There’s so much more to social care than crisis. It’s a sector that can be lifesaving.

Whatever Boris announces in the coming weeks, we mustn’t allow social care to be presented as a niche issue – it’s is about the sort of society we want to create together, and as a disabled person and a taxpayer, I want a system based on compassion, kindness and equality.

Social care has been misunderstood, neglected and under-resourced for too long and we should all care about changing it.

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