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No doubt, the Minister will reply that some steps are gradually being taken towards the aim of equal citizenship, such as in the field of employment support for disabled people. That is absolutely correct, but when it comes to people with a learning disability, how might they cope in a new workplace if they have not had the training in social skills for which this Bill legislates, or if they have not been supported to participate in other inclusive activities throughout childhood and early adulthood? We need a holistic approach to independence and, for me, that is what the Bill is all about.

For many with severe learning disabilities and their families, the crisis in care provision has been exacerbated following the recent campus closures in residential NHS care. The closure of these campuses is very welcome but too often results in a reduction of support for the individual as local authorities try to save money. I believe that the duties set out in the Bill would make it harder for local authorities to provide inadequate levels of support.

My noble friend Lady Boothroyd raised this matter in her Oral Question to the Minister, Lord Darzi, last Tuesday. She asked:

“Is he aware that local authorities have no legal obligation to provide 24-hour care services and that some have abandoned plans to build special housing?”.

Unfortunately, the Minister did not answer that extremely pertinent question directly, merely contenting himself with,

“Government policy is clear: everyone could benefit from good support to live in the community if that support is tailored to their particular requirements. I cannot stress enough what at local level that personalised care should be about”.—[Official Report, 10/3/09; col. 1053.]

Your Lordships will no doubt note that in interpreting the Minister's response, there appears to be no statutory obligation on local authorities to provide good, or

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even adequate, services, exactly as spelt out by my noble friend Lady Boothroyd. Unless local authorities know precisely what is expected of them and the necessary finance is there, learning disabled people will be left to get on with the minimum support, as has been their unhappy lot throughout the centuries.

Those in the House today may have heard of the widely reported case, documented by Channel 4 in January and referred to by David Lodge in his contribution to two most moving and thought-provoking articles about learning disability, which appeared in the Guardian on the Saturday following the death of Ivan Cameron. Perhaps I may quote the now deceased Lord Byron and,

This unbelievable story is of a family in Norfolk struggling to cope with the transfer of care from an NHS campus. The daughter, Tracy Butt, is 44 and has cerebral palsy and epilepsy. She cannot speak, has very limited understanding and must use a wheelchair to move. Her parents are in their sixties and have suffered ill health—the mother from cancer and the father undergoing a heart bypass operation. Recently, the Norfolk primary care trust told them that the bungalow where Tracy received residential care would be closed. The replacement was to be supported living; in effect a quick transition from full support to extremely limited support, expecting Tracy to cook and to use household appliances, even though such actions were clearly beyond her capabilities. The harsh reality is that her hard-pressed parents would have to fill those gaps. Their fight with social services goes on, as it does for more and more people moved from residential care without a realistic assessment of their complex needs.

Enabling independence does not mean withdrawing help. It means supporting people to make their own decisions, to shop, to manage their money or to travel. Some people will need support with all aspects of daily life, including personal care. The vast majority of disabled-people support tends to be an essential part of independence.

I am concerned that the Government are in denial about the scale of the problem. They need to carry out an urgent survey on the quantity and quality of provision being offered to disabled people seeking independent living. Much of this work has already been done for them by research carried out by others such as the Learning Disability Coalition. Its Tell It Like It Is report last year drew from surveys of people with a learning disability and their experiences of cuts in social care: 34 per cent had seen their daytime activities cut; and 37 per cent of people whose college courses were cut are now staying at home instead. There is further evidence of removals of employment services, transport services and respite care homes. So let us stop denying that there are cuts in services.

Furthermore, a recent study by the Centre for Disability Research, commissioned by Mencap and the Learning Disability Coalition, suggests the social care needs of adults with learning disabilities will increase by up to 5.5 per cent per year from 2009 to 2026, compared with the Government’s previous estimates of just 1 per cent growth. The reason for this includes a higher

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survival rate of babies with profound and multiple teaming disabilities. If this is not addressed, we will continue to see deteriorating levels of social care.

As specified in the Bill, each local authority and NHS body must identify how many disabled persons are in its area, together with his or her needs, and plan support accordingly. Given the inadequate anticipation of disabled people's needs applying at present, this is clearly a necessary step. Personalisation done properly must identify the individual's needs and the necessary funding should then be calculated, rather than the current practice of cutting the cake into even thinner slices.

The Bill proposes a fair and sensible approach to enforcing this, through the introduction of a national resource allocation framework, a move advocated by Mencap and others in the disability sector. Such a system should involve assessment of disabled people with the purpose of working out their entitlement to care. Entitlements set out in a national strategy will avoid the postcode lottery that sees unfairness for those with moderate learning disabilities who happen to live in the three quarters of councils which now support only those with substantial or critical needs. The resource allocation framework is the logical way of enforcing the principles of personalisation, this ensuring that both local authorities and central government understand the many challenges to be overcome before disabled people may truly experience independence.

Also welcome in the Bill is the introduction of the duty to allocate an individual budget. In 2007, the Government stated in Putting People First that individual budgets should be implemented by 2013. But there is no sanction to ensure that this will happen unless it is enshrined in legislation, so that choice over social care is not limited to a minority. Perhaps the fear of individual budgets for government and local authorities is that they can no longer hide cuts in provision when that provision is given as a cash payment.

So when the Minister responds, I hope that she will acknowledge that equal citizenship for disabled people, especially those with a learning disability—whom I have a particular reason to support—is still a long way off, and that the Government must increase funding to make independence and equality of opportunity a reality. We know that the Government are due to publish a social care Green Paper later in the year, and I trust it will be truly aspirational for all disabled people. At least it should recognise the many basic needs which are still required by disabled people who, if it were not for the tireless and often unrecognised support of their families, would be left to lead an unhappy, undignified and, for some, quite impossible life.

10.52 am

Baroness Wilkins: My Lords, I applaud my noble friend Lord Ashley for once again giving us the opportunity to press for legislative reform of the care and support framework. It took no fewer than 19 attempts over 10 years to ensure that disability discrimination legislation reached the statute books. I hope that we will not have to wait so long for the independent living Act, or something very similar to it.



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I have some reason for optimism. I hope it is justified. Since this Bill was first introduced to your Lordships' House in 2006, it has driven a range of positive developments in relation to independent living. The independent living strategy, published last year, was in large part a response to the Bill and the huge support it generated. This was very welcome. For the first time, we have a cross-government commitment to driving forward policies that take us closer to freedom, choice and control for all. I hope the Minister will be able to update us on progress in delivering the strategy and how disabled people will be involved in monitoring it and holding the Government to account.

The Bill has also helped to bring Government to acknowledge that the care and support system is in need of radical reform, hence the Green Paper on social care reform that we eagerly await, and the Law Commission review of the legislative framework for adult social care. It has also intensified the demand and pressure for roll-out of individual budgets resulting in Putting People First, the transformation programme for adult social care, which is an attempt to galvanise local authorities into action in individualising funding and moving their systems towards delivering choice and control to disabled people. Two Bills currently before Parliament extend this approach, with the Health Bill providing for piloting personal health budgets and the Welfare Reform Bill piloting a right to control employment and related support funding. Pilots of individual budgets for disabled children and their families are also being pursued.

Lifetime homes are another measure at the heart of the Bill and, again, this is an area where we have won significant gains. All social housing must meet the standards by 2011 and the private sector has until 2013 to deliver of its own volition or face regulations to force it to do so. So there is widespread acceptance of the need for reform and important steps being taken towards it and my noble friend Lord Ashley can take considerable credit for this.

However, all these disparate initiatives seem to indicate a piecemeal approach to independent living. There is a danger that they may further fragment the response to disabled people's needs. Where is the joined-up thinking between individual budgets for personal care, the piloting of personal health budgets and the individual budgets for disabled children? How do they tie in with the right to control which forms part of the Welfare Reform Bill currently making its way through Parliament?

None of these initiatives recognises the fundamental importance of advocacy to deliver independent living. Disabled people need a secure framework of local advocacy provision throughout the country to make a reality of choice and control. Advocacy services are crucial in ensuring that disabled people make choices for themselves—choices which might otherwise be made on their behalf by other people. Can the Minister tell the House whether the Government are making any firm progress in this area?

Only legislation can deliver the fundamental transformation and reform required for independent living. That is why we continue to urge the Government to seize the opportunity presented by this Bill; for it is,

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and always has been, a golden opportunity to deliver the transformation that the Government have promised, and rectify the flaws in legislation which create barriers to human rights and independent living.

As we have already heard, the Government need to consider the risk of leaving fundamental reform too late and not pursuing it vigorously enough. The Commission for Social Care Inspection's recent State of Social Care report warns that most people still experience a one-size-fits-all model of care that is not geared towards people's individual needs. Councils are at an early stage in transforming social care, and developments are patchy and vary between different groups of people. There are different understandings of—and levels of commitment to—personalisation by councils, partner agencies, people who use services and carers, as well as difficulties in extending pilot schemes. Those with multiple and complex needs continue to have little, if any, choice about their care. While the number on direct payments has grown, the number of people benefiting from individual budgets remains only 10,000—of whom a fifth live in Oldham, a pioneer in this field. This should be a signal that the time for pottering is over. We need to commit to reform or risk losing momentum and seeing personalisation poorly and patchily implemented.

As we have already heard, another risk is the unacceptable strain that is placed on families affected by disability the longer that the current situation persists. Another recent CSCI report found that disabled parents and their children often receive fragmented and inadequate support. Few councils are achieving the right balance between supporting disabled parents and supporting children who help look after their disabled parents. Less than a third have developed any kind of joint protocol to clarify responsibilities within the council and with other partner agencies. We know all too well the costs of not supporting families. Look at the Disabled Persons (Independent Living) Bill, and you will find measures that would clarify disabled parents' support entitlements, end fragmentation and mandate the joint protocols required to meet the needs of families in a holistic way.

More generally, there are hundreds of thousands of disabled and older people effectively abandoned by the social care system and abandoned by the health system too. What is their lot? They may be forced to rely on informal family care if they are lucky, but at huge social cost to themselves and to the carers forced to give up their jobs or their own mental and physical health. Deprived of practical support, thousands will see their dignity and independence slowly slip away until such time as their lives are at risk and costly acute care is the only option.

We could end this hardship and deprivation by redirecting resources away from dependency services and bureaucracy into a support framework that boosts independence, employability, social mobility and participation, reaping major long-term economic benefits. We need to grasp the opportunity provided by the Bill. In a general election in one year's time, disabled and older people will deliver their verdict on their satisfaction with progress so far. More than 11 million people is an electorate worth wooing.



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I should like us to be in a position to demonstrate that fundamental transformation and delivery on independent living is an imminent reality rather than a distant dream.

11 am

Baroness Masham of Ilton: My Lords, it is my pleasure to pay tribute to the noble Lord, Lord Ashley of Stoke. He has worked tirelessly over the years in your Lordships' House and another place, campaigning on behalf of disabled people, and he has chaired the All-Party Parliamentary Disability Group for many years. I am pleased that he has so many supporters today.

This is the third time that the noble Lord has introduced in your Lordships' House this Bill on independent living for disabled people. The Bill illustrates just how complicated and varied disability is. It may be difficult for the Bill to be successful at this time, but the noble Lord deserves a medal for perseverance. I thank him for raising yet again some of the needs of disabled people.

There are many disabilities therefore there are many needs. Disability comes into so much of our legislation and it is important that it does not get left out. Only yesterday, when the Mayor of London announced that people ought to cross the road more quickly, I wondered whether he had thought about disabled people. So many people cannot race across roads when they are elderly or disabled, or elderly with a disability. This is one aspect of independent living. At the Millbank crossing near Parliament I can only just get halfway across the road before the green man starts flashing. My electric wheelchair only goes at four miles per hour. I hope that elderly and disabled people will be taken into consideration.

Many people have been greatly shocked by the horrific treatment of children such as Baby P by local authority children’s protection agencies. The Disabled Persons (Independent Living) Bill has much in it about assessments. With disability being so varied and complex, does the Minister think that the staff from social services departments and other staff who have responsibility for assessing disabled people have enough training and experience to make accurate assessments? I feel that the equipment and other needs of disabled people may be a postcode lottery. Some equipment may come under health and some under social services. These departments should co-operate to achieve the best quality outcome.

Disabled people have to be proactive if they are to manage to find their way through the maze of red tape. Some people do not have the drive, energy and ability to do this. Yesterday, at a meeting of the Motor Neurone Disease Association, I met a charming man with MND. He had been told by someone from the Wheelchair Service that, as he had MND, it might not be worth getting a wheelchair for him. How demoralising and shocking that a trained member of staff had such an appalling attitude. He told me that he had bought himself a suitable wheelchair. The Wheelchair Service is known as a Cinderella service. There is great need for improvement. I was pleased that the Members of Parliament present were also shocked to hear this. I was the only Member of your Lordships' House at

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that meeting. To relieve breathing problems at night for sufferers of MND, which is often a serious problem, a non-invasive oxygen pump can be of immense help and can extend life. This need has been pointed out to the National Institute for Clinical Excellence, but its assessments of equipment can be very slow indeed. This is a simple, cheap way of improving life. I am convinced that there should be a fast-track system to obtain the equipment for those who suffer from motor neurone disease.

The MND Association has written to the noble Lord, Lord Darzi of Denham, about this but has had no reply. I expect that the letter is sitting on a civil servant’s desk. I should be very grateful if the noble Baroness, Lady Thornton, will look into this, as the noble Lord, Lord Darzi, is passionate about his report, High Quality Care for All. To achieve high-quality care for people with MND, one needs a fast track, with understanding, high-quality staff who know what needs to be provided without delay. I hope that the Minister will urgently look into this. I wonder how effective members of the Neurological Alliance consider the National Service Framework for Long-Term Conditions is. As some of the needs are so complex, there should be guidelines for staff and members who may need more awareness of how to make life better for many disabled people.

One of the clauses in the Bill covers discharge from hospital. This is a very important aspect. I declare an interest as president of the Spinal Injuries Association. Many people with severe injuries have to stay many extra months in much needed hospital beds, costing the NHS a lot of money, as they do not have a suitable home to go to. At the spinal injury unit at Oswestry, a good system of houses is provided by Trans House, so that people can be discharged and stay, with help, waiting for their houses to be made ready for them, thus not blocking beds. This is a halfway-house system but it needs the co-operation of people working together in health, housing and social services. This housing in Oswestry is only a drop in the ocean.

To make independent living better for disabled people, there should be communication and co-operation between statutory and voluntary organisations and service users’ needs should be listened to. The existing legislation should be made to work better and disability ought to be put higher on the priority lists of PCTs and local authorities. I hope that Members of Parliament will support disabled people.

11.09 am

Lord Low of Dalston: My Lords, having not been able for one reason or another to support the noble Lord’s Bill on any of its previous appearances in your Lordships' House, it gives me great pleasure to do so today. The noble Lord, Lord Ashley, is a figure of unique stature and unrivalled authority in the disability field and it is a particular pleasure to see him here today in such good form. As others have remarked, his persistence is admirable and what he has to say is rightly accorded the highest respect. Like the noble Baroness, Lady Wilkins, I hope that he will not have to wait as long as those who framed the disability

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discrimination legislation in the 1980s and 1990s for his ideas to be fully taken up and implemented by the Government.

The first clause of the Bill states:

“The purpose of this Act is to ensure that disabled persons enjoy the same choice, freedom, dignity, control and substantive opportunities as persons who are not disabled at home, at work, and as members of the community”.

It is hugely concerning that such a statement still needs to be made after the legislative achievements of the past few decades. The United Kingdom is widely hailed as having some of the most advanced anti-discrimination legislation in the world, yet here we are, having to assert once again that disabled people should enjoy the same rights and freedoms as everyone else.

Is this really necessary? I fear it is and that, as has been movingly attested by other noble Lords, despite the achievements of the noble Lord, Lord Ashley, and other distinguished Members of this House, this Bill is correct in its analysis of the current situation and in its provisions to address that. However, we have to make the point not only that legislation is important, but that its full and complete implementation is absolutely critical if the rights which it contains are to be delivered.

We have heard from other noble Lords about the importance of a national independent living strategy, the need for it to be properly resourced, and the role it can play in drawing together current provision and making new provision where none exists. Clause 4 calls for such a strategy to include an economic plan and a framework to deliver the strategy and, most importantly, to involve disabled people, their carers and advocates, the voluntary sector and professionals in the development of the strategy.

Clause 5 places general and specific duties on the NHS and local authorities to promote independent living. The duties in Clauses 6 and 7 would make independent living a reality by obliging local authorities to meet the needs of disabled people by enabling their access to front-line services, personal budgets and employment. The NHS will also have to take greater steps to involve disabled people and provide an appropriate and sufficient range of services.

We all know the importance of co-operation between agencies and organisations. I was pleased to hear the noble Lord, Lord Ashley, highlighting the importance of that in his presentation of the Bill. I am, therefore, particularly pleased that Clause 8 will support local authorities and the NHS in working together alongside key partners to promote independent living.


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