Is integration the end for inclusion?

Carers Disability Social Care

I am honoured to have been invited to write a response to Andy Burham’s recent speech on his vision for an integrated health service, in relation to how it affects disabled people. Before I begin I think I should assist in avoiding any confusion by explaining I am not that Simon Stevens, the one in control of health services in England. Instead, I am an independent disability consultant with 20 years experience of social care as a service user and someone working in the field in many ways.

Labour is promising a fully integrated health and social care system hailed as one service that meets everybody’s needs. It should be firstly noted this is very different to the parallel ‘National Care Service’ they were proposing just before the last election. While the integration of health and social care looks logical and promising, for disabled people of working age particularly, this concept could be quite damaging.

To understand this, it is important to explain some context. Labour left Government in 2010 when personalisation was the key theme of social care policy. It must be understood that personalisation was a professionals friendly step-down to full independent living as defined by the old disability movement. At this time, personalisation was already a disappointment to most as professionals have watered it down to meaningless words, but it was better than nothing.

The last 5 years has seen Winterbourne and the rise of the carers movement as the right of carers appears to have been given priority over service users by this Coalition government. At the same time, a new and vocal ‘sick and disabled’ movement has grown out of the opposition to the welfare reforms, demanding welfare over inclusion and independent living, leaving many disabled people, particularly those with high support needs, out of the political agenda. This means Labour has lost its historical links with the independent living agenda as it now simply sees disability as a welfare issue as it promises to deliver Iain Duncan Smith’s reforms better than he could.

This means the integration agenda could be a convenient opportunity to retire personalisation as the priority appears now to be reducing hospital admissions and bed blocking, rather than a quality of life as social beings which people require to be included and active citizens. The priorities scare me because it has the potential to undo social care and under the control of health, potentially revive long-stay hospitals as a convenient way to cheaply manage people.

Social care is not just about preventing falls or allowing quicker hospital discharges. If we add the ever growing power of the carers movement, which has mostly squashed independent living out of the agenda, I predict things can only get worse for disabled people unless there is a major shift in the culture of health and social care towards independent living and including social based outcomes. It is highlighted by Andy Burham’s remark that ‘severely’ disabled children now live longer and may even need adult services. This is a very odd thing to say as it is firstly totally out of date as there is not a sudden crisis in the transition between child and adult services, a problem that has always existed. But more worrying is that it shows some welfarist prejudice, as he suggests children with high support needs just need warehousing, under the direction of their carers (as no one has parents anymore), to continue into adulthood as the need for a decent education and employment opportunities appears to be irrelevant.

Labour’s policy is confirming the general welfarist thinking on disabled people in terms of those fit for society and employment opportunities, and those who are unfit for society. When Labour still wants to ‘look after’ old people like they are all war heroes without a mind of their own, it is clear disabled people who require social care are automatically deemed unfit for society, mindless objects of pity who will be controlled by this integrated system.

I want Labour to be fully committed to independent living and inclusion for all regardless of age, but I fear they will simply set up a new and improved Independent Living Fund, reinforcing the two tier system we have now where only those who demand independent living gets it, where people like myself remain ‘lucky’, while the rest are warehoused or left as the property of their families.

Enablement and Empowerment are cornerstones of an effective and cost efficient health and social care system, but when professionals fight to keep their jobs and control of their piece of the cake, costly disempowerment will continue to be the order of the day and so any new money will simply be swallowed up by empire building. This means that unless Labour is willing to replace the engine of the new “NH&SCS”, as opposed to simply giving it a new spray job, it will be business as usual in this new game of musical chairs.

I fear Labour’s plans are going to potentially destroy social care in terms of personalisation and independent living, as its bigger brother, Health, takes centre stage making all the demands. Unfortunately, it is a bit late for this election to go back to the drawing board to design a better policy!