Jane Campbell: coalition of carers and disability groups is needed

Disabled people’s organisations and carers’ groups must co-operate to push for more social care. The clock is ticking, warns Jane Campbell (pictured)

Why is the debate about the future of independent living for disabled people kept almost entirely separate from the one about support for carers? Both groups deserve the best life chances. The debate about ­carers is enjoying its highest political profile in years but the voice of disabled people is seldom heard in it. This is a curious situation given that without disabled people’s need for support there would be no debate. If the government is committed to promoting independent living for disabled people of all ages, then surely it follows that the objective of any carers’ strategy should be to involve carers in supporting independent living for disabled people.

Politicians of all colours are desperate to show that they “care about carers”. Care equates with compassion. Associate yourself with that and the feelgood factor becomes tangible for everyone involved. Carers fly in the face of everything the doomsayers believe has gone wrong in society, for they are selfless rather than selfish. If we support them, as they care, we may believe it shows society is not the self-interested individualistic one we thought it had become.

No evidence of more compassion

This is a potentially dangerous and misleading narrative. The rise in the numbers of informal carers is not evidence of a growth in altruism or compassion. It is evidence of what happens when an expansion in the numbers requiring support meets fast-retreating public services. Relatives become stranded in the middle, often with no way out other than to give up their personal life ambitions to support a family member. Older disabled people and older carers also face tremendous isolation and bad health, putting pressure on crisis health care which could so easily be avoided with less expensive preventive community services.

Nearly 80% of local authorities now provide services only to those whose needs are judged to be “critical” or “substantial”. This scandalous situation is stark evidence of our abandonment of any sense of responsibility for one another. It is the go-it-alone society. But do we realise this? Absolutely not. In a recent Mori poll, when asked what would happen if a relative could no longer care for themselves, 81% of the public believed state services would kick in.

Sadly when one of the 81% finds themselves in an unwanted caring role, it will be too late to do anything about it. The struggle which inevitably follows saps so much time and energy there is nothing left to demand change. Politicians may celebrate carers but it is hard to believe that they are listening to them. If they were, how is it that on their watch social care is being run into the ground?

That is why I believe the time has come for disabled people to speak out for carers and vice versa. I believe disabled people’s and carers’ organisations must come together to forge a new consensus built on reform, investment and expansion of our social care system, with a clear aim of promoting the independent life chances of all concerned.

Given the government’s failure to join the dots, we must do it for them. Together, carers and disabled people must set aside the historical differences that made the supported feel an unproductive burden and the supporter guilty if they yearned for life outside the caring role. We must demonstrate why it is in the public interest to make this investment. We must make the connections not just between policy on carers and disabled people, but between the future of social care and the wider challenges we will face as a country over the coming decades.

Increasing demand

The clock is ticking. Current trends indicate that the increasing demand for informal carers will lead to a massive decline in the number of women in the workforce – what a retrograde step that would be. Already, one in three children living in poverty has a disabled parent. Social care is a growing determinant of life chances for those who need it and all who share their lives. The question should not be “can we afford to invest more in social care?” it should be “can society afford to keep carers and disabled people in reciprocal dependent relationships?” By keeping us separate we are all losers.

Jane Campbell is chair of the Equality and Human Rights Commission disability committee

This article appeared in the 6 December issue under the headline “We are now the go-it-alone society'”