WE CURRENTLY HAVE A SOCIAL CARE system based on the Poor Law principles of means and needs testing. The vast majority of social care is delivered by the private sector or outsourced former local authority services. Much of this provision is stuck in a service delivery time bubble, creating dependency and restricting independence.
After nine years of austerity cuts, coupled with arbitrary ‘welfare reform’, the system is at breaking point and many thousands of people have died unnecessarily or prematurely from this double whammy. The UN described this as a “human catastrophe” and a “grave and systematic” violation of the human rights of disabled people.
The government still has no credible proposals to offer following the ‘dementia tax’ debacle during the 2017 election campaign. The often promised social care green paper has failed to materialise. Age UK research estimated that 54,000 people – or 77 a day – have died waiting for social care packages since the government first said in March 2017 that it would publish the green paper. During the same period 1,263,844 older people have developed an unmet need, such as requiring help to wash or dress – this is 1.805 every day.
Local authorities (LAs) who are responsible for funding and delivering social care have had 40% cuts since 2010 and face hundreds of millions of pounds more cuts to their budgets over the next two years. This has led to a dramatic postcode lottery of care, according to research carried out by Disabled People Against Cuts (DPAC). So far any suggested increases in budgets will come from rises in Council Tax, a regressive local tax imposing a disproportionate burden on lower income groups, as has already happened over the last two years. In his desperation to fix Brexit, the Prime Minister has promised new government money – promises few are likely to take on trust.
There are always calls to join up health and social care, but this is a trap for the NHS. Social care is largely delivered by private sector/for profit companies. In social care the bottom-line trumps everything. As council budgets are cut, so needs are no longer recognised or met, as the eligibility bar is set higher and higher. It is currently estimated that about one million people with social care needs don’t get any support. That is why the Tories and their allies want to move the NHS towards the social care model of delivery – it is part of their privatisation and private health insurance plans. They have already demonstrated this with their proposals to roll out NHS personal budgets on the failing social care model.
Social care is means tested and only the poorest receive free social care. Even this is now being eroded and undermined with raids on people’s limited incomes and benefits. When we wrote about this in Briefing nearly two years ago we said that local authorities are now putting up people’s personal contributions so high that they are being forced to give up their social care because they can’t afford it. With two more years of austerity cuts this situation has got much worse.
We now have the dangerous and illegal situation where people who have been assessed as needing care under the mis-named Care Act are losing it because it is too expensive. They are having to make appalling choices like: do I eat and pay my rent, or do I give up my care and independence?
Research from the University of Oxford and UCL, published in the BMJ Open journal shows 120,000 excess deaths of older disabled people and care home residents as a result of austerity cuts between 2010 and 2014. The researchers estimated that an additional 100 extra deaths would occur every day – an additional 152,141 people by 2020 – if austerity continued, which it has. They estimated that an additional £6.3 billion is needed every year to close this “mortality gap”.
The perfect storm of institutionalisation and austerity has been felt particularly by people with learning disabilities and autism. The closure of community-based facilities from the early rounds of cuts resulted in a spike in the number of disabled people being held in so-called assessment and treatment units. These private ‘hospitals’ have sprung up in response to the market and opportunities to make super profits.
The first scandal was Winterbourne View, exposed by Panorama in 2011. Despite the government commitment to close these institutions there are more people constrained in them today than there were when the abuse was first exposed. The recent incidents of torture and bullying in Whorlton Hall, County Durham and Muckamore Abbey NHS hospital, County Antrim, Northern Ireland, demonstrate how deep and corrupt this crisis has become.
The Equality and Human Rights Commission (EHRC) have taken legal advice to create a right to independent living based on Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD). The context for this is the analysis of the UK government’s regression against this article:
Spending for adult social care in England was budgeted to be 3% lower in 2017/18 than in 2009/10, which is equivalent to 9% lower per person accounting for population growth over this period, meaning “older and disabled people with more complex care and support needs getting less long-term care.”
Of the 87 Continuing Healthcare policies we reviewed, 44 of them restricted support at home to an extent that threatened to contravene the European Convention on Human Rights Article 8 - the right to respect for one's private and family life - and UN CRPD Article 19 – rights of disabled people.
Across Great Britain disabled people face a shortage of accessible and adaptable homes and long delays in making existing homes accessible, with patchy provision of advice, support and advocacy, and only around a quarter of local authorities across Britain setting a percentage target for accessible housing.
Despite the government’s Transforming Care agenda to move people with learning disabilities and autism out of inpatient units and into community living, as of the end of February 2019 2,295 were still in inpatient units in England, of which 1,330 (58%) had a stay of over two years in length.
The UN CRPD has recommended that UN CRPD Article 19 should be incorporated into domestic law. The EHRC agrees with this recommendation, and has developed proposals for legislative change to strengthen disabled people’s right to live independently and be included in the community. The Commission has recommended that the UK government should incorporate the UN CRPD as a whole into domestic law so that individuals can effectively challenge rights violations and access redress.
Given the centrality of the right to independent living, they also support specific, targeted measures to incorporate Article 19 rights and bring domestic law into line with international requirements. However, to date there is absolutely no indication that the government has any intention of doing this.
That is why disabled people’s organisations (DPOs) are campaigning to scrap the Care Act and to replace it with a right to independent living enshrined in law, based on article 19 of the CRPD and for a universal national independent living service paid for from direct taxation and free at the point of delivery, alongside the NHS: https://www. rofa.org.uk/independent-living-for-thefuture/.
This is the only way to solve the social care catastrophe that faces disabled and older people and meet our UN CRPD responsibilities.
This social policy is both radical and transformational. It should be the centrepiece of an inspirational manifesto commitment which would be up there with the 1945 commitment to establish the NHS. This is a time to be bold, not to be tinkering around the edges. We hope that the shadow cabinet will treat this issue with the urgency it demands. There needs to be real co-production with DPOs on the future of social care and the implementation of the UN CRPD Article 19 under a Labour government.
We must start immediately recording unmet need so it can no longer be ignored. Crucially there need to be transformational proposals coming from the shadow cabinet on social care for the longer term. Current plans and announcements promise investment in current private and local authority social care services which are not Article 19 compliant. Promises of free personal care in the home or partial nationalisation of some care homes are not radical or good enough.
This could be a huge missed opportunity to co-produce with disabled people and our organisations in line with the UN CRPD. It could potentially put a newly elected Labour government on a collision course with the UN, the EHRC and DPOs. This must be averted and joint planning for co-production and real reform for universal and sustainable social care must start now.
Mark Harrison is director of Social Action Solutions, and Senior Research Fellow in Social Action at the University of Suffolk.
Peter Beresford is co-chair of Shaping Our Lives, the disabled people's and service users’ organisation and network, and Professor of Citizen Participation at the University of Essex.