My grandma Hazel has dementia and I’ve been caring for her for the past two years. Seven million people across the UK are in a similar situation – caring for their friends, parents, children and siblings. It can be really overwhelming and lonely, especially at the moment with all the extra stress, uncertainty and pressure of the coronavirus pandemic. And in my day job, I hear every day from families and carers of autistic people who face the same worries and lack of support that I do.
Lots of us can’t be there for the person we look after at the moment, either because they’re vulnerable or because we might be unwell. Equally, it’s important that those of us who are caring for others during this time get the support we need to keep going.
Carers are plugging the gap in social care
Many of the 700,000 autistic people in the UK receive support from unpaid carers. Some autistic people need round-the-clock care, either in their own homes or in residential care. But council budgets have shrunk over the last few years, and that’s meant less support for the people who need it most.
Our research suggests that even before the coronavirus pandemic, two in three autistic people didn’t get the support they need. Unpaid carers have increasingly stepped in to fill this gap. Carers UK estimates that they save the economy about £130bn a year.
Under the law, carers are entitled to a carer’s assessment to find out what support they might need to maintain their own physical and mental wellbeing. But many aren’t told they’re entitled to this. Even when carers get an assessment, it often doesn’t lead to the right support, whether it’s short breaks, respite care or peer support. And, in the context of the coronavirus outbreak, we’re worried unpaid carers – who may themselves be vulnerable – will be expected to pick up even more of the pieces and end up overwhelmed and burnt out.
Many carers tell us they’ve had to reduce the hours they work, or leave work altogether, to meet their caring responsibilities. They can end up facing financial difficulties – often because they’re not supported by their employer. I’m really lucky I can work from home when I need to be there for my nan. But many don’t have this option. That’s why Carers UK’s campaign to call on the Government to put in place paid care leave would make such a huge difference.
Worryingly, their research suggests that almost half of carers haven’t had a day off for more than a year. This is too much for anyone and is devastating for their health – both physically and mentally. The stress of not getting the social care support we need for my grandma, and the level of responsibility I’ve felt, has affected my own mental health.
What needs to change
Caring can be difficult and during the coronavirus pandemic it’s likely to get even tougher. To make sure carers can continue helping the most vulnerable people in our society, the Government and councils must make sure they get the right support – and step in if carers can’t continue. But the Government also has to address the root of the problem: the social care system has been starved of investment. Carers can’t keep filling the gap.
In mid-March, the Government announced £1.6bn for social care to support councils during the coronavirus outbreak. This was desperately needed to keep the system afloat, but no one knows yet if this will be enough. We need the Government to commit more money if people need it and, once this outbreak is over, to find a long-term solution that better protects autistic people and their carers.
If you’re a carer for an autistic child or adult and are looking for information and guidance please visit: autism.org.uk