Viewpoint: why does my social care support feel like a game of Monopoly?

Following on from his appearance on ITV this week, Matt Lester discusses how his social care support in Southampton became a game of chance and why he is concerned that support is being reshaped to fit budgets, not people’s needs.

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Imagine social care was a game of Monopoly. But in this game, your local council plays the always-present banker. They decide what counts and what doesn’t. And instead of title deeds being bought or auctioned, it’s support hours for people who live with disabilities. People like me.

But unlike the real monopoly, there are no Community Chest cards, no moments of kindness or relief. It’s all left to Chance. As you move forward, you can’t know whether you’ll lose hours – or get told you no longer qualify for the things that make life worth living.

Of course, my life isn’t a game. The stakes are much higher. I am 35 and live with a mild learning disability and coeliac disease, among other conditions. I live in Southampton, in a small flat. It’s my place, with routines that keep me steady.

For years, I have had support. For about 18 and a half hours a week, support workers visit me and help me to live more independently.  This support is vital – it’s not a luxury. It’s the difference between coping and falling through the cracks.

But then, this morning, the doorbell went. Chelsea, my locality manager who works for my support provider, Dimensions, was with me when I opened the door. Emma, my social worker from Southampton City Council, stood there.

I hadn’t met Emma before. She had been my social worker for just two days. There’s little continuity here. Emma smiled, said hello, and we all sat down.

No cuppa policy

There’s strictly no cuppa, though. These days, you aren’t allowed to offer your social worker a drink, in case you poison someone. Yes, that is an actual policy.

Emma then dropped the news: the council is reassessing changes to my support. I’m going to have to make do with 15 hours, maybe 10.

Currently, I understand that Southampton City Council is re-tendering all aspects of adult social care. That means they are getting social care providers like mine to “bid” to support us.

The council is still working out the finer details of reducing my support. But what I heard clearly was that the life I had built around my 18-and-a-half hours of support per week was no longer secure.

What counts as social care support

When I was told about my social care support being reduced, I cried.

To comfort me, Chelsea, my locality manager, put her arm around me. Emma, from the council, said she wanted me to have a better life, and I believe she meant it.

Here’s what makes me want to laugh and scream: Going for a coffee with your support worker no longer counts as support. Neither do bowling, the cinema, nor getting on the bus if you can walk.

You can go to the shops because getting food is practical, but not to the places where ordinary life happens, those places of community, where friendships are built and independence is tested.

The message is: stay home and be safe. But home can be isolation. I have been there, and I know how small and empty life can feel.

Cutting support hours does not make my needs disappear. It only makes them invisible to the paperwork, and the truth is that paperwork never has to live my life. None of this is person-centred. It is system-centred.

‘None of this is person-centred’

Yet unlike far too many of the hundreds of thousands of people who live with a disability, I have a voice. I am Co-Chair of advocacy organisation ARC England’s Together for Change, and Vice Chair of the All-Party Parliamentary Group on Learning Disability. I have met MPs, such as Care Minister Stephen Kinnock, to discuss what life is really like for people like me.

I know how to speak up and tell the truth in plain language. I also know that most people in my position do not have this platform. Most people just get a letter or a call, and their life shrinks. Support is being reshaped to fit budgets, not people’s needs.

Here’s a paradox of receiving social care support: the more you do, the less support you get. My deepest concern is for the future. What funding is there going to be? What support will be available?

Whatever happens in the budget, we are going to face some big challenges, and if we don’t raise concerns that we’re raising today, we’ll lose bus passes, we’ll lose blue badges. We’ll lose everything.

I told ITV this week, on a televised prime-time evening news slot, highlighting what life is like for people with a learning disability.

Start by breathing

If you are going through cuts to your support, too – like so many people who receive support probably are – start by breathing. You are allowed to be upset. You should never feel ashamed for showing emotion when something so personal – the support you draw on – is being stripped away. Keep a record, and ask for everything in writing.

Tell them about the group you no longer attend, or the hours that slipped away. I hold on to my faith and my church. Your hope might look different, but find hope and keep it close. That hope will keep you moving forward.

Message to the government

To the central government, whoever is in charge today or tomorrow, please listen to people with disabilities. Fund our lives, not only our must-do tasks. Going for a coffee with a support worker is not a treat. It is community, confidence and mental health. If you only fund the bare minimum, you will pay later for loneliness and crises. Pay support workers fairly so that good people can stay in the job.

Count travel and community as support, because independence is not a matter of filling out a form.

And of course, this isn’t monopoly. It’s not a game – but right now it feels like my independence is being played for, one roll of the dice at a time.

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Matt Lester, who receives support in Southampton