Care Bill [HL]

Baroness Uddin Excerpts

Tuesday 21st May 2013 Lords Chamber

[Baroness Uddin]

My Lords, I come to this debate from the perspective of a professional in the social care sector, as well as with experience as a local authority councillor and, not least, as a carer for over 30 years. I agree that we are at a crossroads for our social care system. In my contribution, I shall draw on the evidence presented to us in the Joint Committee inquiry on the Promoting Independence, Preventing Crisis report, which was ably led by the all-party parliamentary groups on local government and disability. I take this opportunity to salute the work of my noble friend Lady Campbell, Anne McGuire, Heather Wheeler, and the noble Baroness, Lady Wilkins.

Much emphasis has rightly been put on the demands of our growing ageing population, and it is right that we do so, as is the fact that one in three of those who use our care services are disabled people of working age. I would like to focus on that aspect, and I make no apologies for unreservedly quoting some aspects of the inquiry, which I commend to the House.

For too long, Governments have used a sticking plaster approach and incremental improvements in dealing with adult social care, resulting in systems that are bewildering for the recipient and unwieldy for authorities to administer. So I, too, welcome the principle of adult social care reform. The Joint Committee inquiry took evidence from a long list of expert witnesses representing all sectors, all the major disability organisations and those involved in statutory provisions, as well as local authorities and academia. There was undeniable consensus, and a call for disabled people to be at the heart of social care policy reform as well as making decisions in their care. In doing so, we must not see them as passive recipients, but must uphold their human rights under the UN convention to which the United Kingdom is signatory, and embrace the fundamental principles of independence.

There are pervasive concerns that much of our provisions fall significantly short of providing dignity and choice, thus hampering independent living. Of course, the funding shortage is a reality, but we cannot allow those who may be voiceless to be sidestepped at the behest of what may be regarded as best value by locally set criteria. The evidence received by our Joint Committee points to local authorities struggling to achieve the best outcomes, resulting in raising their eligibility threshold for care provision. Many instances have been cited, implying that current eligibility criteria have led to many thousands of disabled individuals falling out of the care system altogether.

The statistics are astonishing. The Audit Commission on social care in England found with the fair access to care system in 2005 that 50% of 152 local authorities in England provide services to those with moderate needs and above but, by 2012, 84% were only providing services at the higher threshold of substantial need, with three councils now providing social care to people who fall into all four eligibility bands and only 24 councils providing care to those with moderate needs and above. The Care Bill will fail to improve the social care system for disabled people if eligibility is set so high that those in need will not receive even the basic help such as washing, dressing or getting out of the house. These changes, challenges and differences in eligibility are bound to lead to more disabled people left ineligible for care and support, contrary to the Minister’s claim that the Bill will provide compassionate and consistent care to those who need it.

The inquiry committee hopes that the Government will consider more uniformity in setting thresholds for eligibility right across the country, ensuring that the 2013 spending review will give due regard to adequate resources being made available so that the needs of disabled people are not compromised. I was surprised to hear the Minister say that legislation will not impact on the funding available. How can provision be efficiently provided, as he suggests, when the system is already stretched to its limits? Disabled people deserve to have confidence in any new care and support system, and I hope that we will be able to rectify some of these anomalies.

There is a significant body of opinion calling for prioritising the design of a new framework of eligibility, which should actively engage core stakeholders, addressing gaps highlighted already in the House today. The joint inquiry report suggests that the current fair access to care services criteria should be replaced by a system that is more objective and coherent and implemented across the country, where resource allocation is transparent and enables the disabled person and their carers to take part in the decision-making process. Worryingly, the evidence that we took suggests that there is little cohesion within various partners of care providers. This will stretch the ambition of the seamless services that the Care Bill envisages. Personalisation appears not to break down the barriers between care, housing, transport, leisure and community involvement, particularly when any person moves from one area to another. Therefore, I welcome the commitment in the Bill that continuity of care packages will not be interrupted by any move to another local authority or area. I would like to ask what mechanism will be in place to ensure a smooth transition if that happens, and whose lead responsibility it will be to manage the transition. I suppose that I am asking who will manage the “Oklahoma!” moment and who will provide the leadership.

This Care Bill is happening alongside the Government reassessing all those working-age disabled adults receiving disability living allowance and transferring recipients on to the personal independence payment. The House has voiced significant concerns to the Government, which were augmented last week by the whistleblower giving an insight to reports that individuals were not receiving even-handed services. The fact that supporting evidence given by applicants was not forwarded by the assessing company for assessors to use suggested a bias towards finding reasons to award points begrudgingly or not to award points, thereby affecting resource allocation. I have spoken to a number of carers and this is being seen by some as another cynical example of eligibility criteria being used to reset the goalposts for determining how much financial help people with disabilities require and ultimately receive.

A Member of this House recounted in a meeting last week the experience of being assessed. I hope that that respected individual will not mind my repeating what was said. The whole experience was said to have been so harrowing that the individual felt defeated by the very system which has the ambition of delivering dignity and choice through this Care Bill. I am deeply saddened that so little appears to have changed in the 30 years since I had a bitter experience with my son. Trying to access educational and social care was like asking for rain on Mars. In the end, we as a family were so defeated that we retreated into relying only on our own resources and ways and means.

I agree that reforms need to be made but they must and should be robust and intelligent in respectfully and professionally identifying genuinely deserving individuals, especially as regards those with disabilities which are difficult to understand and those with fluctuating conditions. Indeed, I have been made aware of the case of a disabled adult and her advocates who are trying to augment a personal budget. The person says that she felt bullied by a director of commissioning into accepting a package which represented best value for the authority but completely ignored her condition and needs and possibly violated her right to privacy and family life. If our society is to be judged by how we treat our weakest members, we have some distance to walk. I hope that we will be bold and ambitious enough to remember that social care must not simply be about basic survival but about supporting people to live independently. Independent living means disabled people of all ages having the same universal rights of freedom, choice, dignity and control as other citizens at home, at work, and in the community. It means having the right to obtain practical assistance and support to participate in society and live an ordinary life that others take for granted.

Your Lordships may not be surprised to learn that even in this context there is a distinct difference in the services provided to those from minority communities. It is a fact that 32% of all disabled people live in household poverty. Sadly, for minorities this figure jumps to 44% of disabled people living in household poverty. A report suggests that income for minority disabled people is 30% lower than for the general disabled population. The Equalities National Council and Scope in a report entitled Over-looked Communities, Over-due Change found that services are not fully inclusive for BME disabled people, who experience significant language and communication barriers, social isolation and stigma exacerbated by their lacking access to information and advice, including from well recognised NGOs. Many of the large NGOs operating within communities accepted that they had some way to go in addressing the needs of minority disabled people. In fact, a quarter of BME disabled people report difficulties receiving benefits and accessing independent living compared with 16% of others, indicating that additional unmet needs exist. Evidence on barriers to care shows that BME disabled people's conditions and impairments tend to escalate quickly to higher levels of need. I submit to the House that this is a costly process and that it is therefore even more important that the social care system provides effective coverage at lower care need equivalent to “moderate” within the current fair access to care needs system.

That is not all: meeting criteria and being eligible for support is not the end. An assessment determines the value of someone’s personal budget, and the resource allocation system ascribes a number of points to each eligible need which has been identified and, in referring to a table, sets out the financial value of each set of points, which then fleshes out the support plan to purchase and achieve identified independent living outcomes. Final decisions about the value of personal budgets are made by an anonymous panel of local authority social care professionals based on information provided by the disabled person, their social worker and the RAS calculation, often without ever having met the disabled person. The Sue Ryder report, The Forgotten Millions, highlights this point and found that a lack of uniformity among local authorities in allocating resources and calculating care packages for individuals is causing deep confusion and stress. A case was brought to my attention recently of a disabled adult who had all services stopped at 6 pm one evening. Apart from the legality of how and why this happened, an anonymous panel had turned down for the third time a request to increase travel by nine miles twice weekly, despite the social worker having great input from advocates on the matter. As the client had received an insufficient explanation from the social worker at 6 pm at night, she had to recall her father from business in London. He arrived at the social work offices the next day to petition the head of services as to why this had happened. Fortunately, services were immediately reinstated, with the family being offered a transfer from a direct service from the local authority to a personal budget.

Many carers claim that all these formal processes lack transparency regarding panels, their remit, obligations and decision-making. Disabled adults and their advocates are forbidden from having adequate details about the panel making the decisions. Surely transparency should be an obligation. If the objective is to provide care and support while maintaining the dignity of the individual, surely it is critical to have the individual or their representative present to ensure that their opinion is heard and valued as they are the experts on their own lives. The panel should have due regard to the contribution of disabled people in determining the nature of their care and support in any decisions that are made. Our report asks that the Government place resource allocation systems on a statutory footing through the Care and Support Bill and place new duties on councils to be transparent about these decisions. I welcome the move to put personal budgets on a statutory footing in Clause 25 of the Care and Support Bill. That should be enhanced to ensure that local authorities are transparent about decisions relating to the allocation of resources. All too often, personal budgets have care costed at one rate, with another rate available if external agencies are used.

[Baroness Garden of Frognal]

I apologise to the noble Baroness but she has been speaking for 15 minutes, which is normally the maximum time.

[Baroness Uddin]

I apologise. I am nearly finished. Anyone not associated with the care sector will become dizzy when encountering the array of acronyms and phrases such as RAS, FACS, DLA and PIP. Indeed, they are fortunate members of our society, with the ability to lead an active, fulfilled and independent life. They are fortunate enough to be able to perform everyday tasks such as getting up, washing, dressing, personal care, food preparation and eating without having to justify even the most basic daily tasks. For those members of our society who are reliant upon our care systems, this Bill represents a new hope that our social care system will enable disabled people to live an independent life which is just and equitable. I note noble Lords’ massive endorsement of the Bill and eagerly await its outcome.