Funding of Care and Support

Baroness Wilkins Excerpts

Thursday 24th November 2011 Lords Chamber

[Baroness Wilkins]

My Lords, I thank my noble friend Lady Pitkeathley for initiating this timely debate. The noble Baroness, Lady Campbell of Surbiton, had hoped to take part but, sadly, she has developed a chest infection and I know that all noble Lords will want to join me in wishing her a speedy recovery. She asked me to speak to the points that she wished to make, which I share, and to thank Marija Davidson of RADAR for her help.

The noble Baroness, Lady Campbell, particularly wanted to speak on future policy for people below pension age who need personal care, people who are either born disabled or who become so in their younger years. Her main points focus on the issue of human rights and the place of the precious, long-fought-for concept of independent living in future policy on social care.

The proposals of the Commission on Funding of Care and Support rely heavily on building the ability of people to plan and prepare to contribute financially. This is, of course, sensible for those who have had years of employment which allowed them to save for their inevitable decline. But many disabled people do not have that opportunity. Only 50 per cent of disabled people of working age are in work, compared to 80 per cent of non-disabled people, while 23 per cent of disabled people have no qualifications compared to 9 per cent of non-disabled people. The average gross hourly pay for disabled employees is £11.08, compared to £12.30 for non-disabled employees.

All this does not bode well for our ability as disabled people to save and pay for our social care support, whether early or later in life. For those born disabled, the odds against them are stacked even higher, as they will never be able to accrue enough capital to purchase the big things in life, like a property, or to start a business. Disabled people do not start from a level playing field, and it was pleasing to see that the Dilnot report recognises this inequity in its recommendation 3:

“People born with a care and support need or who develop one in early life cannot be expected to have planned in the same way as older people. Those who enter adulthood already having a care and support need should immediately be eligible for free state support to meet their care needs, rather than being subjected to a means test”.

But what will that “free state support” consist of? How will our precious concept of independent living fare in this new world?

An inquiry is currently being undertaken by the Joint Committee on Human Rights, of which the noble Baroness, Lady Campbell, is a member, into Article 19 of the UN Convention on the Rights of People with Disabilities, which concerns independent living. Three things have become clear during the evidence sessions. First, there has been a decline in opportunities for independent living due to decreasing financial resources. Secondly, there is a continued reluctance of local authorities to embrace choice and control for disabled people so that they can exercise independent living. Thirdly, there is buck-passing. It seems that as soon as money gets tight, the urge to snatch back power and control is overwhelming. The increase in charging for social care over the past decade has been matched by a decrease in disabled people's freedom to live independently.

A Social Care Institute for Excellence report published in February highlighted that social care budget holders are losing control over their budgets, as councils require accountability for every single expenditure. Just over a year ago, disabled people receiving social care support through direct payments had the flexibility to spend their payment in the way they deemed best to meet the agreed objectives in their support plan. It is now being asked whether this is a luxury that local councils can afford. However, what they are calling luxury is Article 19 of the UN convention. The positive effects and benefits of independent living, which basically mean choice and control over how one’s personal support money is spent, are legion. Not only does it mean that disabled people can work, volunteer, support families and be active but by providing social care in this way, service users will create new markets through their individual choices. However, local authorities still do not see it that way. In their desperate efforts to control spending, councils are mistakenly snatching back our control, which will undermine the very markets that we need for 21st-century social care. Are we past the heyday of direct payments, which were hailed as a life-starter by disabled people, just when they have barely started to roll out across the country?

Disabled people report a full-steam reversal on supported independent living in the community, always on the grounds of cost. Many disabled people who have had high levels of need are now being asked or, in some cases, cajoled on to continuing care, where there is no right to control your personal budget.

We have to face the fact that there is a cost to disabled people enjoying their human rights, as there is to most human rights—the right to a fair trial, for instance, the right to education and so on. Surely that is a price worth paying collectively, as the whole of society will benefit, not just disabled people. The evidence to the JCHR Article 19 inquiry has demonstrated this starkly; and we have ever-present evidence in this House in the noble Baroness, Lady Campbell, who writes:

“Without another human being by my side, 24/7 to help me function equally, I cannot exercise any of my fundamental human rights”.

Disabled people have serious concerns whether independent living is being eclipsed in the current debate on social care reform. Will the Minister give an indication of the Government’s thinking? For example, are the Government considering allowing personal health budgets to be controlled far more by disabled people? Of course, there is also the issue of portability, just spoken to so eloquently by the noble Lord, Lord Pearson of Rannoch—the right to disabled people’s freedom of movement. The Minister in the other place has expressed a keen desire to make portability a reality. However, it seems that this Government are talking about portability of assessments. Most people can already take their assessment with them; the issue is whether they will be satisfied in the new area. It is portability of outcome that disabled people are seeking. That is what the noble Baroness, Lady Campbell, is seeking in her Private Member’s Bill and we hope it will receive government support.

Independent living is a great good for disabled people and society at large. We are seeking reassurance from the Minister that the right to independent living will take its rightful place in underpinning the future of social care and in its funding.