My Lords, in welcoming this Bill I first declare an interest as someone who benefits from a whole range of care services, without which I would not be in your Lordships’ House. I hope that my professional knowledge, combined with my personal experience, will give added value to the debate over the coming weeks.
This Bill is the culmination of five years’ complex and challenging work to modernise the legal framework for adult social care. Much work has been done by the Law Commission, but the Government have also understood that they needed expertise that can come only from those who use care and support services. They conducted a lengthy and broad consultation. I have been impressed by the Department of Health’s efforts to get this right. Much credit for this must go to the fine leadership of its former director-general, David Behan. He recently left to take the helm of the CQC, which is very lucky. The Bill also benefits from the experience of Members of this House. A number of your Lordships served on the Joint Committee that considered the draft Bill and recommended improvements to it. The Government have listened, and the Bill is better for it.
Equally, the Bill is the culmination of more than 25 years’ work by the Independent Living Movement of disabled people. I consider myself very privileged to have played an active part in this social movement to radically change the way that care and support are designed and delivered. Since the mid-1980s we have fought to ensure that disabled people of all ages have the same opportunities that everyone else takes for granted. This has involved challenging entrenched professional attitudes, political assumptions and public misconceptions about what disabled people can and cannot do. The struggle continues today. Many people believe, as I do, that disabled people have lost ground recently. As someone once observed, “The price of liberty is eternal vigilance”.
However, this Bill shows how far we have come since the passing of the Community Care (Direct Payments) Act 1996—in my view, the most emancipatory care and support legislation in my lifetime. That Act was passed because a group of disabled people was able to persuade the Government of the day that they could be trusted to take control of the cash needed to pay for their personal care support. That was my first memorable experience of the House of Lords.
Twenty years ago, I sat in awe behind the Bar, as the noble Lord, Lord McColl, introduced his disabled persons Bill.
Three years later, in another place, the then Parliamentary Under-Secretary of State at the Department of Health, John Bowis, took over the Bill. His powerful speech at Second Reading would be just as relevant in today’s debate. He said:
“I have heard from people who have a disability, but also hold down a job or voluntary work and whose working lives are obstructed by the rigidity of a council service rota; or people who do not like to complain, but would really like a different range”,
of home help support,
“or people who have responsible jobs, but are treated by the care workers as if they were rather tiresome and untidy children. They have no real independence, no real choice and no real dignity”.—[Official Report, Commons, 6/3/96; col. 372.]
What became the Community Care (Direct Payments) Act 1996 was a bold step on the then Government’s part to empower disabled service users. Local authorities were required to deliver services differently. They could not just decide what was best for us anymore. That Act transformed many people’s lives, including my own.
As your Lordships will be aware, there has been much progress since that landmark statute. Further legislation has widened access to direct payments. Personalisation policies have developed other ways for people to have more say and control over their support and care. Personal budgets offer another way for people to decide how funds should be used to support them. Even the NHS has caught on, by introducing personal health budgets for people with long-term conditions, so they, too, can have more say over their healthcare. A process that started among working-age disabled people has broadened out to benefit other groups: people with learning disabilities, older people and people with mental health problems. They are all using direct payments and personal budgets—and so, too, are parents of disabled children, giving them both more control and allowing enough flexibility for many to pursue their dreams. Policy guidance has encouraged local authorities to work with people and their families as equal partners. By working together, many are coming up with solutions that best fit their individual circumstances, using public services to complement their own resources, personal assets and community links.
All these positive trends, many of them with roots in the user and carer movements, come together in Part 1 of the Bill. It represents a sea change in the values and attitudes embodied in the legislative framework for adult social care. It treats people requiring support as citizens first and foremost, with rights and entitlements stemming not only from this Bill but from the Human Rights Act, the Equality Act, and international agreements, such as the UN Convention on the Rights of Persons with Disabilities.
However, your Lordships would not expect me to tell them that this Bill is perfect. It sets out many of the right goals, but we will need to question the Government very closely on some of the means by which they intend to achieve them. For instance, we are promised first sight of the regulations on assessment and eligibility towards the end of June. This will coincide with announcements about the public spending
review, so we can assume that resources will impact heavily on the qualifying criteria for public support. Much also depends on how local authorities choose to implement their responsibilities and powers under this legislation. There is a great danger that this Bill could be ignored as being fine words but without teeth.
There are already wide variations in the sensitivity and understanding shown by local authority staff in assessing and responding to people’s needs. I recently had a review visit to assess my suitability for a personal budget. Like fellow service users, I am naturally very wary of reassessments as they generally involve budget cutting. I did not know what to think when I received a copy of the reassessment report last week. It says that I have,
“severe difficulties in either self-expression or understanding”.
If any of your Lordships have difficulty understanding what I am saying today, please come to my office for clarification. On a more serious note, the reassessment of my ability to communicate could mean the difference between a social care direct payment and NHS-funded care. That might be fine if support would not change for the worse as a consequence. It is no secret that some local authorities cannot wait to offload clients onto NHS continuing care. I am hopeful that health budgets will eventually mirror social care direct payments. However, this is not yet the case.
Last year, the JCHR investigated independent living. The resulting report was dedicated to a 22 year-old disabled man. This young man had been in part-time employment and living independently, supported by social care direct payments. However, after being admitted to hospital with a chest infection, it was decided that he would be safer with a tracheostomy. Tracheostomy care is not rocket science. It does not take long to train a sensible person. However, the local authority decided that this man was now “the problem” of the NHS. As a result, his direct payment was withdrawn. It took health commissioners six months to decide how he would be cared for, leaving him in a hospital critical care unit for three months longer than was necessary. This severely disabled independent man lost his job, his loyal PAs and his dignity. The cost to the taxpayer was £36,000 in hospital fees, double what it would have cost had he been allowed to keep control of his cash and care, with an enhanced payment from the NHS to pay for the extra PA hours needed during the night.
Is it any wonder that disabled people fear the future? They do not just fear the consequences of inadequate funding, they dread past ways of working creeping back in the name of austerity. Those of us who use care services must be given more control to enable us to survive these difficult financial times. Services need to adapt to enable the recipients to create their own budgeted support and to seek work, wherever that may be. This nicely leads me to return to an issue I have been raising in your Lordships’ House for the past four years. Noble Lords will know that I have a particular concern about portability of care and support. I will push for the Government’s proposals on portability in this Bill to match the outcomes set out in my Private Member’s Bill.
The Minister for Social Care in another place has indicated his desire to work closely with those of us campaigning for total portability of care and support.
I have consulted on the subject for more than five years with disabled people and their organisations, carers, lawyers and professionals in social care. My Private Member’s Bill is the culmination of that work. My Social Care Portability Bill has been recognised by the Department of Health. The greater part of it has been subsumed into the Care Bill before us today. However, there is one crucial difference. My Bill ensures that disabled people can move to another area, confident that they will receive the support they need to enable them to continue to play an active role in society. The manner in which the council meets those needs may be different because of the different configuration of local community and care services but it should not reduce choice and control, and the ability to achieve the outcomes they need. I believe that the Care Bill has the same intention but I would welcome confirmation that this is indeed the case. There are questions about bureaucracy and enforceability but the detail can be fleshed out in Committee.
There is one other matter I want to flag up today. Those who receive their care not from a public authority but from a private body lack the full protection of the Human Rights Act. The Joint Committee recommended an amendment to the Bill to put this right but the Government have not addressed it. It is a loophole that must be closed. I will be interested to hear the Minister reflect upon that issue.
I have great expectations of this Bill’s capacity to change the way that care and support are delivered in the future. We have waited for this a very long time. We must not let the opportunity slip through our hands. We are all interdependent. We all need to feel safe and valued. We all need our dignity respected. We must take heed of those “experts by experience”, of which I am proud to be one. We have much to offer the debate on how we create care and support services which maximise the well-being of those who need them. I am sorry if I have taken longer than many other noble Lords may for the rest of this debate but I feel so strongly about this issue. We have much work to do and I am happy to do my part.
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