If I ruled the world… I would overhaul the social care system

Opinion, Politics

Adult social care is in crisis. Poet Jamie Hale offers their radical idea for change

If I ruled the world, social care would be free. Disabled people would have control of their own lives and a lack of support wouldn’t leave us trapped.

I am in my mid-twenties and use a wheelchair. I need support for everything, from turning in bed to leaving the house. However, my impairment isn’t the biggest impediment in my life. Instead, it’s a lack of care. Someone, somewhere, has decided that four short care visits a day is enough for me to lead an independent, fulfilling life.

This means that if my catheter leaks at 10pm, I am left lying in a wet bed until my care assistant comes the next morning. This means that I am often forced to wear incontinence pads – not because I need to, but because most of the time there is no one there to take me to the toilet. This means pressure sores, hospitalisation, and indignity. I rely on my housemate to voluntarily help in an emergency, but he has a full-time job and can’t give me the support I need. I want to study a Masters, and develop a career as a poet and writer, but without enough care, these things are just not possible. Ideally, I would receive live-in or 24-hour assistance, but my social care plan doesn’t allow this. I am imprisoned in my own home.

Social care is provided to disabled people who are unable to complete essential tasks of daily living without support. It is not free and even people on benefits, some who can’t work, typically have to contribute towards cost of care. Local authorities do have have the power to cover costs, although this is ‘means-tested’.

Qualifying for social care has become increasingly strict since 2010, with government cuts impacting people’s lives significantly. A prime example of this was the closure of the Independent Living Fund (ILF) in 2015. This was a ring-fenced £320m fund that helped care for people with high-support needs – one that no longer exists and leaves care plans extremely limited. Since 2011, there has been a £4.6bn reduction in local authority social care budgets, with people all over the country losing a huge amount of their care hours. People are frequently given as little as two hours a week to leave the house, during which time they’re expected to go to medical appointments, do their shopping and socialise.

Unsurprisingly, this means they are restricted from having hobbies and social lives, as they’re not given enough care to do these things. This further disables us, leaving us trapped in our own homes, causing anxiety, depression, and isolation. Worse still, cuts to funding overnight care means people who need significant night-time assistance are being forced to live in care homes regardless of their preference, because it’s cheaper than supporting them to live independently.

When I told my social worker that my situation was untenable, I was threatened with the suggestion that the only alternative would be a care home. This keeps me from pushing for improvements because I’m terrified of being warehoused and locked away at a time when I want to be studying, developing interests, and socialising, just like anyone else my age. I’m not asking for anything more than what abled people get automatically. I’m asking to be able to use the toilet in the night if I need it, or have my bed changed following a catheter bag leak, instead of me being left to lie there and wait for morning knowing this may result in another six months of pressure sores.

The focus of social care needs to change. Rather than just satisfying basic human needs, like being fed and watered, social care needs to give people all the funding they need to live independent lives – lives in which they make their own choices about how they want to spend their time and aren’t prevented from doing so due to a lack of care. Disabled people too have dignity and we don’t deserve the demeaning situations that non-disabled people don’t have to deal with.