Monday 29 May 2017

A 'Dementia tax" or a right to independent living?

I wasn’t going to blog about the Tory manifesto mess on social care which has been aptly dubbed the “Dementia tax” - it’s not good for my blood pressure - but there are some important things being missed in the public debate. So here goes….

1. It is an accident of history that social care is not funded in the way that the NHS is.  The NHS is funded on John Rawls' principle of the ‘veil of ignorance’ - in other words no-one knows whether they are going to be struck down by serious illness and it is therefore in all our interests that we each pay a bit to ensure that health care is there if and when we need it. That’s the basis of social insurance.  

When the NHS was set up, social care was not a political issue in the same way that access to health care was.  We didn’t have large numbers of people living into frail old age requiring help because of physical impairment and/or dementia,,or large numbers with learning disabilities or mental ill health.  The smaller numbers with these experiences were looked after in long-stay hospital wards or by families.  Thus social care did not become identified as an issue of social justice in the way that health care did.

2.  Fast forward to today and the increased likelihood of living into very old age, with the costs that accompany the need for personal care, means that the injustice of having to bear all or most of the costs of that care, becomes more apparent. Politicians and pundits alike have, for many years, decried as unjust the fact that if someone goes into residential care the value of their house can be taken as part of their assets and used to contribute towards their care. And the Tory manifesto commitment that this practice would now be applied to people receiving care in their own homes just adds insult to what was already seen as a profoundly unjust situation.  It is unjust because it is a matter of luck as to who needs a substantial amount of care as they get older: using inheritance tax, to fund such care would be more equitable because that is a tax based entirely on wealth and not on whether you have bad or good luck in your experience of old age. 

3. Following the outcry Theresa May has offered the ‘clarification’ that there will be a consultation on the proposal and that there will also be a proposal to cap the costs - a commitment to cap costs at £72,000 had already been made in the last election but quickly reneged on. 

4. Both the original manifesto commitment and the ‘clarification’ envisage a role for private insurance, with Conservative politicians generally keen on trying to create a market for such insurance - something which has so far failed to materialise because the reality of the balance of risks and costs undermines the profitability of such insurance. 

5. The current debate on how to fund social care has nowhere to go because there is an irresolvable conflict between the widespread feeling that forcing people to sell their homes is unjust, and the Tory reluctance to raise taxes.  The only proposal which would satisfy the Rawls veil of ignorance principle is that put forward by Andy Burnham, the last Labour health secretary, in 2010 that a national social care service should be developed, which is not means-tested and is funded by a hypothecated 10% tax levied on inheritance.

But that proposal was sunk when the Daily Mail labelled it a ‘death tax’. 

6.  Also missing from the debate is the recognition that the provision of social care is not just an issue concerning older people but is also an issue concerning disabled children and people of working age.  The labelling of the issue as ‘elderly care’ makes invisible the injustice facing younger people resulting from the Tory manifesto commitment.  

7. The proposals in the Tory manifesto - and the wider public debate -  do not address the failure of ‘the market’ to deliver good quality, sufficient home care or residential care.  As I pointed out in my previous blogpost on social care, residential and home care providers are struggling to make a profit, unless their finance capital owners can make a profit out of the value of land and buildings. There is an ever widening gap between what local authorities can afford to pay and what the actual costs of running a service are.  Many providers are pulling out of local authority contracts or leaving the market altogether.  Those that remain are at risk of delivering poor quality services which makes abuse more likely (as distressingly highlighted by the BBC video posted in my previous blogpost).  Many providers can only remain in business because they charge ‘self-funders’ (people who pay for their own care) over the odds, but this in turn makes it harder for self-funders to pay for the support they require, thus reducing demand, impacting negatively on both the profitability of providers and the demand on the NHS as people end up in hospital because they aren’t getting the support they need.

8. The final point is that in all of this we have lost touch with the aspirations that people of all ages have: whatever the nature and severity of an impairment or illness, we all want to make choices and exercise control in our daily lives; we are all entitled, because of our common humanity, to a life free of abuse and deprivation, and, if we need assistance, for that assistance to be delivered in a way which maintains our dignity and respect. 

We need a radical change in policy on social care which needs to recognise and address three issues:

  • the attempt to deliver social care through a so-called ‘free market’, promoted by all governments since the NHS and Community Care Act 1990, has failed
  • the need for social care is the same as the need for healthcare - no-one knows whether/when they will be unlucky enough to experience a need for either health or social care.  Social care, like health care, should therefore be funded by progressive taxation, giving access to all regardless of income.
  • the underlying principles, and the practice, of the provision of social care must follow the principles of independent living, as developed by the disabled people’s movement. To summarise Article 19 of the Convention on the Rights of Persons with Disabilities, this means that, according to the Convention (signed up to by the UK government) we all have the right to live in the community with choices equal to others; we all have the right not to be obliged to live in a particular living arrangement; and we all have the right to personal assistance to support our daily lives.