I feel compelled to post an amended version of an article written two years ago by Sandra Daniels and myself. I’m doing so because sections of the Left are colluding with the Labour Right to impose a regressive National Care Service on older and disabled people. We have always acknowledged there is broad agreement that there is a crisis within Social Care. However, there are vast differences of opinion in terms of its causes and what is required to develop strategies to bring the crisis to an end.
We accept sections of the Left, incorrectly in the opinion of disabled people, believe a National Care Service could be established ‘upon a par’ with the NHS, increasing resources and improving pay and working conditions but such a perception ignores decades of oppressive practices and ideological justifications for warehousing certain groups of people. It ignores how the NHS is run and its failings.
It is a hypocritical position because the Left claim to oppose cuts to services and oppose oppression, yet the call for a National Care Service silences sections of the oppressed who understand clearly that an established National Care Service would lead to reduced services, the withdrawing of support, and increased ageism and disablism. A new National Care Service would, in the view of many disabled activists, bugger up the lives of our brothers and sisters.
There is still a stereotyped perception that ‘Social Care’ is simply about ‘looking after the older people’ which means that other groups of people in need of ‘social support’ are either ignored or subjected to inappropriate services. Another major problem is that there is much confusion and disagreement over what is understood by ‘Social Care’ and as a result, differing interests are being played off against each other. All the major political parties have misrepresented the crisis within so-called ‘Social Care’, due to the stereotyping of people in need of support via a crude collapsing together of health and social issues, hiding the impact of the implementation of cuts e.g. focusing on ‘risk management’ within eligibility criteria and undermining advocacy and independent living. People seeking services are finding their support needs are no longer considered to be significant enough to merit support or that the services they need no longer exist.
Disabled people involved with these issues argue that Social Care and Independent Living needs to be addressed other than through an outdated ‘one size fits all’ approach that has been adopted by both the NHS and local authorities over decades of service provision. Those who require social support come from a range of service users with differing support needs – not everyone needs ‘health care’ or even ‘health and social care’ (sic) and to conflate them all can lead to inappropriate assessment and service delivery (or the denial of any support whatsoever) and have oppressive consequences.
Community-based social support, including independent living, should replace the old fashioned ‘social care’ model in order to change the relations between health, local authorities, other professionals, and service users. It is vital to acknowledge different perspectives among service users. Teppo Kroger writes: “…the words ‘care’ and ‘carer’ are regarded by the disabled people’s movement as paternalistic and dependency creating when used with reference to disabled people. Social ‘support’ is currently considered the more appropriate phrase for disability related services.” There is an urgent need to promote a Human Rights perspective on Independent Living amongst both disabled and non-disabled people. What makes this difficult is not only the historical relationship between governments, health and local authorities regarding ‘Social Care’ and their inadequate understanding of disabled people’s perspective on Independent Living, but also the fact that many of our allies or potential allies are equally spellbound by the way social support has hitherto been planned and delivered.
While there is such confusion and ignorance around Social Care and Independent Living it is hard to see how progressive proposals for the future will get a fair hearing. Our push for a Human Rights perspective is undermined by the policies of the different actors involved. It is clear that people are still confused as to why disabled activists don’t trust local authorities and health service providers. From their experience disabled people understand just how oppressive current ideologies and practices (as well as those potentially in the pipe-line) frequently are. They also know that their own knowledge and solutions are too often marginalised or ignored altogether.
Many decent people remain confused as to why the agenda for the integration of Health and Social Care structures is so dangerous and oppressive. For decades, disabled people and their organisations have fought against the medicalisation of their lifestyles. They view the integration of services, culture, and planning based on such medicalisation as turning the clock back. Disabled people’s organisations have a wealth of material, knowledge and experience that can be drawn upon to develop democratic structures, policies and practice which is capable of delivering good quality services to all communities.
We are all for ’shifting the centre of gravity’ by placing people at the centre of decision-making with the capacity of agenda setting. This is why we favour new independent national and local structures that would change how health, local authorities, voluntary sector, and service user groups worked together to co-produce community-based services with an emphasis on independent living. The core values of this approach are to be found within Article Nineteen of the United Nations Convention on the Rights of Disabled People.
It is important to recognise the ageism and disablism within current practice of both Health and Social Care services. Many people over fifty-five develop impairments or chronic ill health, but because this is ‘naturalised’ as part of the ageing process and dominant ideas about ‘disability’ are oppressive, most older people shun being viewed as ‘disabled’. Employing the social approach towards disability, we can see how by approaching disability as being ‘imposed social restrictions on top of the experience of impairment’, the majority of older people are being ‘disabled’ by inadequate and inappropriate service provision which often includes unnecessary institutionalisation. The coronavirus pandemic has exposed the eugenic undercurrent in existing policies and practices. Disabled people’s organisations believe that addressing health care, personal support and social support has to be done through considering people’s lifestyles and encountered barriers and not simply through the ambiguous lens of ‘well-being’. Over the last two years by working within Act 4 Inclusion we have advanced a new vision which adopts an eco-social approach towards building a transformative way of providing services, enriching communities, and promoting sustainability, choice and control over own lives.
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