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Personal Care at Home Bill

My Lords, I am pleased to contribute to the debate on this short but extremely significant Bill. Free personal care at home: who in their right mind would not support this fundamental principle? Indeed, free personal care at the point of delivery has been at the heart of independent living campaigns for more than 30 years. I declare a personal interest: without state-funded personal care support I certainly would not be here with you today. Moreover, I could potentially benefit from the Bill’s provisions directly—and, boy, I could do with the cash that I currently hand over in charges, which are massive. However, it is not about me today. For me, personal care is not only about getting up in the morning and going to bed at night; it is about my basic human right to live with dignity and equality among my peers—and even my noble Peers. Thousands of people require intense personal care to stay alive, in exactly the same way as they need healthcare. For people like us they are both equally vital to existence. When I am being put on my ventilator or assisted when I am choking, I do not consider whether it is a health or personal care need; it is just essential human support for me. I have never understood why one is free and the other is charged for; after all, we have no choice to say, "No thanks, I’ll manage without". Often, to be severely disabled is to be poor, as we are expected to pay for the privilege of doing all the things that most people never even think about—eating, popping to the loo, scratching your nose and even breathing. Does any other noble Lord consider those acts every day? I do, probably about 10 or 12 times a day. We should welcome the principle in the Bill before we begin to criticise it because it is good and it is right. What else should we welcome—beyond, of course, the attractive free element? I am still thinking about what I might spend the extra cash on. The Bill demonstrates the Government’s commitment to enabling people with high support needs to stay in their own homes. It is hard enough dealing with advanced motor neurone disease or Alzheimer’s without having to leave the familiar surroundings of your own home and to move to a new and strange environment to get the care you need. Another reason I welcome the Bill is that it will make it easier for the NHS and local authorities to work together. Again, that line between health and social care really does not exist. Partnership working between health and local authorities has been a policy objective for many years under governments of both persuasions, but means-testing for social care has remained the elephant in the room. It is an obstacle to joint provision and integrated working. For the group covered by this Bill, this barrier can begin to be removed and that is to be welcomed. Nevertheless, partnership has to involve a third party. May I ask the Minister what guidance or regulations will be put in place to make sure that such an integrated assessment will include service users? There is a strong history of user involvement, choice and control in social care assessments which has yet to take off in healthcare. I will now move on to a few concerns. From my reading of the Bill’s intent, people with critical levels of need will be divided into two groups: the critical and the critical-plus. I am still deciding what group I am in. Perhaps noble Lords might advise me. The second group will receive free care. The other may be charged for similar levels of support. There is great potential for discrimination to occur here between almost identical groups. Will the Minister seek advice from the Equality and Human Rights Commission on whether this approach contains an element of discrimination? As former chair of the Social Care Institute for Excellence and co-founder of the National Centre for Independent Living, I am also concerned that part of the assessment for free personal care will depend on how many activities of daily life you cannot manage without help. The institute and the national centre have been major supporters of the Government’s policies for independence and personalisation. They focus on the things disabled and older people can do and encourage them to be as independent as possible. This Bill, I am afraid, puts a financial premium on proving how incapable you are. I call this the "deficit model" because it creates perverse incentives to present as more dependent in order to be eligible for rationed services. I am now going to hand over to the noble Lord, Lord Wright, as agreed by the usual channels. At this point, Lord Wright of Richmond continued the speech for Baroness Campbell of Surbiton. Last year when I was a commissioner at the EHRC, I helped draft its policy statement on social care. We called it From Safety Net to Springboard and argued that the deficit model of assessment should be abandoned and replaced by one which promoted independence and autonomy for everyone in the caring relationship. We proposed assessments for support, which meant that carers and disabled people were no longer caught in a social-care safety net of dependency, but instead given support which promoted active citizenship, like working, volunteering, interacting socially, and so on. I do not think the springboard formula is reflected in this Bill. However, the Minister may say that the Government have anticipated the problem and plan to offer people with the highest levels of need a period of reablement before assessing their eligibility for free care. This may help them regain abilities that they have lost, but the formula would take them out of the group who would qualify for free care. What evidence do the Government have that shows that reablement works in these circumstances? If you fail to reable enough, would you have to repeat the programme? Would reablement monitors be appointed to make sure that the people with the highest levels of need were trying hard enough to regain their lost abilities? Perhaps the Minister could clear the fog on this one. Most people with progressive conditions such as motor neurone disease or my own condition are going only one way. Are we to be seen as reablement failures? I have one final question for the Minister before ending—some may call it my hobby-horse. The Government say that there will be a standardised assessment tool to assess eligibility for the new entitlement. Should I assume from this that the care package will be fully portable, following the recipient wherever they decide to live? I welcome some of the fundamental principles behind the Bill, but, for now, it throws up more questions than answers.