The government’s promise to consult on social care in England provides an opportunity to bring about change. But for too long, this debate has almost exclusively focused on older people, overlooking those who need care and support much earlier in life.
More than 280,000 working age disabled adults rely on social care to lead independent, healthy lives. When done right, it empowers them not just to live, but to have a life.
At the MS Society, our new report, End the Care Crisis: Stories from people affected by MS in England, demonstrates the transformative impact social care can have for people with multiple sclerosis (MS). From Edith, whose support enables her to get to work each morning, to Martyn who, with the support of a carer, is able to do things others might take for granted, like go to the cinema.
It also highlights the devastating consequences when people aren’t able to get adequate support. Take Angela, for example. At just 35 with two young children, her husband (and carer) is at breaking point. And yet the first time she contacted the council for support, she was told help was only given to people in wheelchairs.
The system continues to fail us, and that is totally unacceptable.
Disabled people aged 18-64 make up a third of long-term social care users, accounting for almost half of the social care budget. We already know that younger people with MS are less likely to get proper support – only 32% of 18- to 29-year-oldswith MS have all their care needs met, compared with 73% of those aged 70 to 79. But this isn’t the only thing illustrating the age divide.
Perhaps one of the most worrying symptoms of our failing social care system is the number of younger adults living in care homes for older people. A Freedom of Information request by the MS Society revealed more than 3,300 adults under 65 are in this situation in England. This indicates that, across the country, almost one in seven younger disabled adults in residential care could be in homes with mostly older people, and potentially missing out on the specialist care they need.
Not only are care homes for older people rarely equipped to meet all the needs of younger adults, living in such settings can be extremely isolating, and have a damaging impact on their quality of life and mental health. This is just one example of a much broader, deep-seated problem.
As a country, we do not provide younger adults with conditions such as MS the care we know they need. The question of how we fund and deliver quality social care has been a subject of debate in this country for at least 20 years. We’ve seen 10 government consultations and reviews of social care in that time, yet our politicians have failed to make the difficult decisions on the back of these.
Social care remains in crisis and there will be a £2.5bn funding gap by the end of the decade. While it’s promising that the government last month finally acknowledged the need to improve social care for younger as well as older people, we must hold it to account on this.
There is increasing evidence that fixing the social care system makes sense – not just ethically and morally but financially too. Reform could help prevent and delay acute needs from developing, reduce pressure on the NHS, galvanise local economies and, most importantly, enable disabled people to live independent, dignified and productive lives.
This latest consultation has to involve disabled people of all ages, offering real action and a bold vision for the future. One that recognises the experiences of everyone who depends on social care, and finally gives us a system that works for all who need it.
Michelle Mitchell is chief executive of the MS Society