Motion to Take Note
My Lords, I rise, somewhat belatedly, to move the Motion standing in my name. To be black, a member of an ethnic minority or disabled is to know what it is to be invisible—to be there but somehow not be seen, or to be heard but simply not heeded. That concept is difficult to explain. It is difficult, frankly, for those of us who happen to be members of the black and minority ethnic community or who happen to be disabled to talk about. Yet it is, for all of us, a fact of life, and this valuable report demonstrates that most effectively, I would argue, because it reveals what a toxic mix it can be to be both black and disabled. You suffer a double whammy of neglect and disadvantage. All too often you find yourself between a rock and a hard place.
The report, Over-looked Communities, Over-due Change, makes salutary reading. Disabled people from black and minority ethnic communities and their families are often left disengaged from the decisions of policymakers and practitioners, disconnected from support systems and services, and disempowered from finding local solutions to the problems that they face. In this House this afternoon we have an opportunity to address that issue. We will have the opportunity to do so again in the weeks and months ahead as the Government take forward their own legislative programme, particularly in relation to the children and families Bill. Today, however, we can ask Her Majesty’s Government to ensure now that the policymakers act not only on this report but on the whole body of evidence that has gone before—a body of evidence that goes back many years, including the period in which I was in government, when we, too, as a Government, had no reason to be complacent about this issue but where some progress was made.
I believe that we will hear the reality reflected in your Lordships’ contributions to the debate this afternoon—contributions that represent a body of unparalleled expertise in this field, for which I am particularly grateful. It is important that we read in the report about the experiences of the black and minority ethnic communities in all parts of the United Kingdom, that we learn about good practice, that we hear and receive the recommendations from the focus groups that contributed to this report, and that we hear and learn from the voices of those people who all too often are unseen and unheard.
We are grateful to Scope and to the Equalities National Council, which is itself a black and minority ethnic voluntary sector body and a centre of excellence in this field. We find from this report that we are confronting, as a country, what amounts to a demographic disability time bomb because the black and minority ethnic population is both growing and ageing. We learn that there are at least 1 million disabled people from black and minority ethic backgrounds in our country. Some 40% of those people live in household poverty, compared with 32% of all disabled people and 17% of the population as a whole. Only four in 10 of black and minority ethnic disabled people manage to find any employment at all, and 40% of those are self-employed or part-time employees. The incomes of those individuals are 30% lower than that of the rest of the general population, with half earning less than £240 a week.
This is not primarily a debate about resources but I would argue that these issues cannot be considered in isolation from the current context of the delivery of services. The issue is not about restraints on resources; we all understand that they are part and parcel of today’s reality and we have to live with that. Nevertheless, the reality is also that these restraints on resources are falling disproportionately on the most vulnerable in our society. We know from the work of, among others, the Afiya Trust that the equality impact assessments on social care budgets are all too often disregarded and that public sector equality duties under the law are flouted. The reality for those small black and minority ethnic voluntary organisations, which play such an important part in the care of the most vulnerable, is that they are suffering disproportionately from the impact of local authority cuts. In 2010-11, £3 million was cut from the sector and £1.5 million from London alone. One in five local authorities does not actually collect any data at all on black and minority voluntary sector organisations.
The question that one puts to the Government today is: will they confirm their commitment to public sector equality duties? Will they reassure the House that the Red Tape Challenge will not be used to water down a commitment to equality? We must also ask ourselves, and ask the Government, what steps are in fact being taken to ensure that their disability strategy reflects the special needs and concerns of black and minority ethnic disabled people. Will the Government meet representatives of the Equalities National Council and Scope to receive their input? A commitment was given on a previous occasion in this Chamber by the noble Baroness, Lady Hanham, that there would be such a meeting. Despite requests from both Scope and the equalities council, no such meeting has yet taken place.
Do the Government intend to respond positively to the UN recommendation, endorsed in this report, that there should be a national equality strategy? All the signs and indications from the Government to date have been that they do not intend to embrace the need for such an equality strategy. However, if an equality strategy is not to be introduced, how are the various strands across different sectors and different government departments to be pulled together? Will the promised disability strategy be backed up by an implementation plan, with a focus on measurable outcomes and a means of monitoring progress?
Will the Government clarify their approach to translation services? There again, we have had conflicting signals from the coalition. On the one hand, the spokesperson in this House very rightly affirmed her belief, based on her considerable experience of local government in the Royal Borough of Kensington and Chelsea, that translation and interpreting services have a very important role to play in the delivery of care to black and minority ethnic communities, yet the Secretary of State for Communities, no doubt concerned about resources, described such services as “divisive”. How can this be, given all the evidence, which is contained again in the report?
One example given was of a tape to describe the symptoms of and treatment needed for multiple sclerosis. It was given to an elderly, non-English-speaking Asian woman in relation to the diagnosis of her daughter and it created tremendous fear, concern and apprehension because it had not been translated very well. These services are absolutely crucial to ensuring that there is proper diagnosis, care and treatment. Will the Government clarify the situation and give service providers and users the reassurance that they seek?
All these questions speak to an issue that goes to the heart of how we care for one another in society. Yes, of course it is important that special needs are met and that we address those issues, so well articulated in the report we are considering, as they affect black and minority ethnic communities. However, the reality is that when the needs of one section of service users are consistently overlooked, it is the quality of service to all that is undermined. We are genuinely all in this together—whatever our race, colour or language and whatever the level of our abilities or disabilities. Responsive, respectful and relevant services, made accessible and inclusive, are to the benefit of us all, regardless of our race, background or relative abilities.
What the Government will hear today will not be special pleading; it will be a call to action for a decent society, one in which we can justly take pride. Last year, in the Olympics and Paralympics, we celebrated our diversity. We took pride in it; it said something important about us as a nation. Yet the reality is that when the celebrations have subsided, for all too many of our fellow citizens disadvantage and inequality remain a fact of life. There is disadvantage, inequality and an inability to access the services that they so desperately need.
I hope we will see in our House’s response to this important report, and in the Government’s response, a determination in this new year to resolve to translate the evidence, which is there for all to see, into policy and action so that we can celebrate good practice and a society that is truly diverse—and one that recognises the huge potential that is lost when we fail to meet the needs of those who currently are not receiving their due. When we take action to enable and empower all of us in our God-given and precious diversity, then we really do have something to celebrate. I beg to move.
My Lords, it is a great pleasure to follow the noble Lord, Lord Boateng, who has brought this very important report to the Floor of the House today. At the beginning, I refer Members to my interests in the register concerning various disability charities.
The noble Lord, Lord Boateng, has outlined in his opening remarks some of the core challenges and problems identified by this report, so in the time available to me I would like to focus on some of the recommendations made by the report. I begin with the recommendations for local authority commissioners. It is suggested that there is a need to redesign commissioning contracts to facilitate collaboration between small and large organisations to allow more consistent, wide-ranging care that meets both personal and community needs. This is a most timely recommendation because of the changes that are taking place, as we debate, in commissioning.
It has been my experience that commissioning, whether it is done at a national level by government, by local authorities or through commissioning structures within the health service, almost inevitably follows a pattern. The pattern is usually one where those who are commissioned tend to be larger organisations, for the reason that they are easier to deal with. Larger organisations cover the ground more and the financial control is easier, rather than if the commissioning is based on a lot of small and more independently, but perhaps more accurately, focused and targeted providers.
That is really the challenge in this recommendation in the report. I do not expect the Minister, who will reply to this debate today, to have all these answers, but I will make this request. This is such a timely report at a time of great change for disabled people that if she does not have specific answers to these questions today, I hope she will consult colleagues—this will often need to be across government—on these various recommendations and perhaps agree to put something in writing in the Library. I think that would be very helpful to those of us who are concerned about how practically the Government are going to address the very timely and helpful suggestions in this report.
I turn now to the recommendations related to policymakers in the report. The report states that,
“BME disabled people’s needs and views have often fallen between the two areas of disability and race equality policy. Finding ways to bring these two policy fields together is extremely important for developing effective support for BME disabled people”.
It is almost self-evident that that needs to be addressed, but I think it is a little more complex than the report suggests, because among the disabled community per se there has for a long time been the big challenge of people who have co-morbidities—people with more than one disability. When you bring into that the additional challenge of a range of ages and, as this report addresses, the BME disabled community, you can see that when you look at how you could try to address the needs of those individuals, it is almost inevitable that you will end up with a generic service.
I say to my noble friend at the Dispatch Box today that it is a real challenge to target the services that policymakers produce on individual needs, which will almost certainly be complex. It is a challenge to provide the strategy through the policy as to how to address the myriad requirements of people who have not just one but often a range of disabilities, where two disabilities might mean, for example, someone with an autistic spectrum disorder who also has either a diagnosed mental health problem or a physical disability and is also part of the BME community. Then there are the age concerns to be taken into account.
Of course, when we talk about disabled people, we must think not just of the disabled people themselves but of their family situation. Siblings and the effect of having a severely disabled sibling are extremely important. When you are providing, commissioning and looking at appropriate services, you have to take a more holistic view at the family, the primary carers and, of course—particularly as far as children are concerned—siblings in the same household.
These are therefore complex issues that are not easily resolved, and they are not resolved well at present. We have to do better for this community. I say to my noble friend that in looking at policy-making, some of the recommendations in this report are absolutely critical. These include, for example, a theme throughout the report: involving disabled people themselves, along with their immediate carers, and the BME communities with experience and background in what the needs and solutions are.
Another recommendation for policymakers is the one to develop a national race equality strategy, which includes the needs of BME disabled people. The noble Lord touched on this in his opening remarks. My noble friend will, of course, reply at the end of this debate, but that recommendation was made in the light of the Government’s announcement that we are to expect a forthcoming disability strategy. If it is not the Government’s intention to develop a national race equality strategy, it would be helpful to know exactly what is being done at present—I assume it is being done at present—under the disability strategy. This would reassure the House that this community’s needs are being considered and will be included when that strategy is made public.
There are also recommendations for service providers. A person-centred emphasis is recommended, and I totally agree with that. One can look at a range of disabilities, and there will be a common purpose in the services provided and commonality in the way in which disabilities affect people and in how some particular disabilities, which might be degenerative, are likely to affect people in the future. One does have to look at the individual; no two people are the same. Service providers should look at the individual and take that holistic look at the individual and their immediate surroundings and life chances.
Employment was mentioned. The figures are appalling for people who could carry out paid work or—and I always emphasise this at this stage—voluntary work. I know this is not the flavour of the month. Everyone is going to be in paid work, but for some people with a disability—and I must emphasise this strongly for my noble friend on the Front Bench—just getting them to the stage where they can maintain independent living is a milestone that many would not have achieved without a lot of support. For some people—and it is only some people—to expect them additionally to take on paid employment could diminish their ability to maintain a standard of independent living that is both safe and acceptable.
We all want disabled people, including the BME community on which this report focuses, to have the opportunity for paid employment wherever possible. However, I am old enough to remember, as I am sure other colleagues in the House today are, when the life chances and quality of life of many disabled people meant that they often lived at home with increasingly elderly parents, the inevitability of which was that at some point there would be a crisis in their care when the parents were no longer able to look after them, so that they, as disabled people, had to face decisions about their future at a point of crisis. That is something which I hope my noble friend will consider.
My Lords, I, too would like to congratulate both the noble Lord, Lord Boateng, for securing this timely debate, and Scope, for producing such a valuable and important report. As president of the National Children’s Bureau—a declared interest of mine—I am particularly keen to draw attention to the compounded disadvantage that children and young people with disabilities in black and minority ethnic communities, or whose parents have disabilities, face to their well-being. Not only do children in general face particular vulnerabilities to poverty, but it is also well documented that disability increases the risk of poverty. When children are additionally members of the black and minority ethnic communities, their well-being risks can soar.
I had a lot of statistics that I was going to go through, but the noble Lord, Lord Boateng, has covered them very well. However, if noble Lords will bear with me, I have one or two points I would like to underline before going on to talk about some more general issues covered in the report. It is vital—the report makes this very clear—that we understand that the disadvantages of disability can be amplified for children from within the black and minority ethnic community. The noble Lord, Lord Boateng, talked about a double whammy. However, if you look at children and young people, and the link with child poverty, as well as the links with disability and the disadvantages faced by black and minority ethnic communities—I am thinking particularly of some black or black British households and the nearly 60% of Pakistani and Bangladeshi households which, according to Barnardo’s analysis of DWP statistics, were living in poverty in 2011—we are talking about something which is more like a triple whammy for children.
Scope’s very important report, Keep Us Close, also made it very clear that the children of disabled parents within the black and minority ethnic community fare no better. We have already heard from the noble Lord, Lord Boateng, about the very low employment rates for some disabled members of the BME community. Disabled women in this community, who are often the main carers, face incredibly low rates of pay. As we have heard, the median was almost half that of non-disabled adults. None of that will be made any easier with the forthcoming changes to financial support through the new disability addition to a family’s universal credit entitlement. For families receiving the current mid-rate component of disability living allowance, financial support for this group will be halved to £28 a week.
It is against that backdrop that the disabled children we are talking about today will face a range of other problems, which was highlighted well in the report. For instance, in many cases, they or their parents will face language barriers in trying to access the care that they need. Simply put, you cannot know what you do not know. For many in this community, the report has highlighted that language barriers mean that they miss out on services available to them simply because they do not know how to ask for them or what they are entitled to. Scope has also found that members of the BME community are less likely to be represented on some of the forums and committees that make decisions about public services. At these crucial moments for shaping policies and services, the needs of the black and minority ethnic community too often go unvoiced.
A concrete example of a missed opportunity in terms of support faced by disabled children with language barriers can be seen in education. Many young disabled people have a statement of special educational needs guiding their education. However, the report has shown that many black and minority ethnic parents did not know what that was or that they should have the chance to influence their child’s statement at an annual review meeting. Include Me TOO is a charity which specifically supports disabled children, young people and their families from the black and minority ethnic community. It has published a report that found that some parents did not even know their disabled child’s annual review meeting was coming up until it had already happened.
Unavailable, incomplete, or outright incorrect translation services, particularly within medical services, present another challenge to BME parents of disabled children, a point which clearly came across in the Scope report. It highlighted a particular case and asked people to imagine that they were the mother of Anita, a woman who was consulted during the writing of today’s Scope report. Her daughter was diagnosed with multiple sclerosis. Rather than a thorough explanation of the range of MS symptoms, Anita’s mother was given a CD of translated information that merely laid out the worst-case scenario. Quite understandably, that really alarmed and upset her.
In addition to poverty and language barriers, the disabled children of black and minority ethnic communities also face a number of more subtle disadvantages of social isolation and stigma. Again, I thought that the report was very good in highlighting these issues. Perhaps I may pick up on a couple of other examples. One misconception that some members of the community face is that they will have significant family safety networks on which they can fall, although sometimes that is not the case and, indeed, the opposite can be true. The Scope report found strong evidence that social isolation can be very problematic for disabled people from black and minority ethnic communities. Most notably, it drew attention to the experience of women, who are generally the primary carers. A number of BME women who took part in the research highlighted social isolation as an acute problem that they had experienced. One female respondent to Scope’s survey said that when they ask social services for extra support, they are sometimes told, “No. You can do it yourself because you are from an Asian background”. She said that social services think that they have a close and extended family who can look after them, as well as religious leaders. Her view was that that was an excuse for social services not doing what they are supposed to do.
Parents in the BME community also voiced concerns over social stigma associated with their children’s disability. The Scope report highlights the case of a Muslim woman which demonstrates this very well. She felt constantly that she had to defend her son against her extended family’s constant judgment of him as “just a naughty boy”. She said that she was very grateful when her son was finally diagnosed with autism, which she felt gave her a sort of defence mechanism against her family’s accusations that bad parenting on her part was the root cause of her son’s problems.
As I hope I have demonstrated and as the report demonstrates very well, which is why it is so important that we are giving time to this subject today, more needs to be done to bring about a cultural shift in the perception and provision of services for all disabled children and all children of disabled parents—yes, for everyone, but particularly those from within the black and minority ethnic community. These children start well behind the starting line in the race of life from the triple vulnerabilities of youth, disability and minority community status, which then can be coupled with the higher levels of poverty, the language barriers, social isolation and stigma that I have talked about.
The question is: what can we do? We will have an opportunity to do something concrete in a Bill which will shortly be coming before your Lordships’ House. Scope has developed a “provide local principle”, which is designed to ensure that services in local areas are inclusive and accessible and, where services for disabled children do not currently exist, local authorities must guarantee their delivery and ensure that parents and families are involved in their commissioning.
Today, I ask the Government to consider including Scope’s “provide local principle” in the forthcoming children and families Bill as part of the local offer to which they have already committed. The introduction of this principle would do much to improve the services available to all disabled children, including those from BME communities. Given the will, I am sure that this can be done and I very much look forward to hearing the Minister’s response on this point.
My Lords, I congratulate and thank the noble Lord, Lord Boateng, on instigating this debate. It is important that this subject is being discussed today. I have spoken to several people who are involved with disability as a whole and, when I mention the services for black and minority ethnic people with disabilities, not much seems to be known. The Scope report presents some of the evidence and I am sure that your Lordships, like me, will look forward to the Minister’s response.
There are so many disabilities, many of which are complex. I want to add something to this debate which I cannot see in this report—namely, the need for prevention of disability, if possible. Disability can be a strain on families, as it can be very costly and time-consuming. Education for women who are so often the people looking after disabled people is so important.
My admiration has no bounds when I consider the bravery of the schoolgirl shot in Pakistan who was campaigning for education for girls. This outstanding girl would now be dead or disabled if it was not for the medical skill she received in Birmingham, her own hard work and will power, and the support of her family and the Government. That shows how important it is that people work together to help people with disabilities.
I mention today in this debate that the Leeds Children’s Heart Unit is fighting for its retention, as there are a high percentage of black and Asian babies born with heart defects in the area of Leeds, Bradford and West Yorkshire. The north is a special case; it needs units in both Newcastle and Leeds. I cannot understand why the consultants who perform the operations cannot travel between the two units to make the service viable. This would save stress and strain to many families with social needs, who would find long-distance travel too expensive and complicated.
Results show a range of variations between black and minority ethnic—BME—groups and white, British counterparts. Most differences are negative, which indicates that BME groups are less likely to report a positive experience. However, many areas show no difference and some show a positive difference. The research findings show that a source of dissatisfaction was that customers struggled to find out about the benefits available for a long time after they had developed their disabling condition. Many participants felt that it was very hard to find out what they were entitled to and that this applied similarly to all benefits available. Many participants felt that they could have applied for benefits and received help earlier on. This triggered some criticism of the Disability and Carers Service.
Information and forms for disability benefits are far too complicated for most disabled people, let alone black and minority ethnic groups. Language barriers often mean that BME disabled people do not know about, and cannot use, services available to others. Therefore, it is often disabled people rather than services that are perceived as hard to reach. Communication is vital in accurately translating someone’s condition or disability. Disabilities in communication can result in inaccurate or inappropriate diagnosis. A lack of information in an appropriate language can significantly hinder or prevent access to services and facilities. This is being stressed in this debate.
We must therefore take great care to send out the right information about services and impairment. This could mean simple measures such as using everyday language wherever possible, testing materials with BME disabled people, and refining these materials before publicising. Given the significance of these language and communication barriers, Scope is concerned about the proposal of the Communities Secretary, Eric Pickles, to cut translation services by printing official documents only in English as a way for local councils to save money, which claims that it undermines community cohesion by encouraging segregation. The withdrawal of such translation services will increase the already significant barriers faced by people from BME communities in accessing support. Can I ask the Minister if she understands that this will be most difficult for the growing elderly population of BME disabled people?
The Government have acknowledged the need to develop approaches to meet the specific needs of BME disabled people as part of the Fulfilling Potential—Next Steps paper on their approach to the forthcoming disability strategy. When will the disability strategy emerge? The report found that social isolation was particularly acute for women in BME communities. Many women who took part in Scope’s focus groups said that their impairment compounded the isolation effects on their household and children’s roles, with other family members rarely making adjustments to support the management of their condition.
The stigma attached to disabled people can be widespread and acute. It is far from limited to BME communities, yet Scope’s report found that many people in BME communities felt that it was a particular problem for them. The report also found cases where the most acute source of discrimination was from family members themselves, demonstrating the need to improve attitudes towards disabled people within BME communities. There is a lot for these communities to do to improve their attitudes towards their disabled people. It is possible to change attitudes. It has taken a long time to reach the support and enthusiasm which surrounded the 2012 Paralympics—but it happened. Therefore, I hope that better facilities will emerge for the BME population.
I, too, wish to thank the noble Lord, Lord Boateng, for securing this debate. I agree with the noble Lord that the Government’s response to the serious issues in this report should be seen as part of the legacy of the Paralympics. It was so wonderful, day after day during the Paralympics, to see the achievements of the athletes and also to see disabled TV presenters such as Ade Adepitan. However, one should not overestimate the effect on our country. In my view, the programming has virtually returned to what it was before. Most notable in this regard was the hugely popular “BBC Sports Personality of the Year” programme, in which Paralympians were nominated for the award but all three presenters were from the Olympics coverage. However, during the Christmas holidays, I was impressed to stumble across the actor Christopher Slater, who has cerebral palsy and appears in “Tracy Beaker Returns”. I assure noble Lords that this was the Christmas choice of television viewing of my niece, not me.
This is, of course, a report about not only disabled people but also those from black and minority ethnic backgrounds. As I mentioned in my maiden speech, I have had the privilege of getting to know many within the British black community. Therefore, I am not surprised by stories such as that yesterday about Stuart Lawrence, Stephen Lawrence’s brother, who has been stopped by the police more than 25 times. However, I am surprised by the legacy in this area. Often when I talk about these issues I am met with the comment, “You sound rather like the Labour Party”. The legacy here has been the overpoliticisation of the issues around black and minority ethnic communities and racial equality. It is important that these issues are not seen as a matter of left or right, or Labour or Conservative.
It is vital that politicians show national leadership in this area. These issues are complex and nuanced. Leadership is vital so that everyone has the confidence to contribute to the debate. I have also often met people who talk to me about these issues but suddenly clap their hand over their mouth and say, “Was that the wrong word to use? Have I just been racist?”. Usually, I cannot for the life of me identify the word they have just used to which they are referring. Although language is important and racism still exists, this oversensitisation, which we also saw in a discussion on immigration, is helpful neither to free speech nor to resolving the serious matters outlined in the report.
Of course, I have to admit that, in the past, the understanding of my party on these issues has not been exemplary. However, things have changed and continue to do so. Your Lordships have only to wander down the Corridor to the other place to see the number of black and minority ethnic MPs sitting on the Conservative Benches.
Important decisions and actions have also been taken, notably the Mental Health (Discrimination) Bill of Gavin Barwell MP, the removal of innocent people from the DNA database and the emphasis on the need for adoption and fostering of black and minority ethnic children. These are changes to key areas where black and minority ethnic communities have been disproportionately affected for too long. However, these should not be party political issues. I say cautiously to noble Lords that as a Parliament we may have some reflecting to do on accessibility to parliamentary employment and experience. What if you were to lay out the photos, without any further identifying information, of all those who have a security pass issued by a Member of either House? How would we score on ethnic minority inclusion and disability? I am not overly confident in that regard. If lobby journalists have begun to be self-analytical and concerned, as an article in the New Statesman last year indicated, we as parliamentarians should be as well.
I turn to the specific issues in the report. First, it is important to note that the report was issued before the 2011 census results regarding this community were produced. We have seen a rise in the relevant statistic from 8.7% of the people we are discussing in England and Wales having a black and minority ethnic background to a figure of 14% now, so I think it is correct to say that the 1 million BME disabled people mentioned in the report may well be a case of underreporting.
As regards underclaiming of benefits and access to services, much in the report reflects what was reported by the Department for Work and Pensions back in 2010. It is very worrying to read that there is a reversal of the normal maxim that the very poorest are the most likely to claim. Black and minority ethnic disabled people are often in poverty but are not claiming what they need. I wonder whether the Government have thought about trying to enlist the assistance of religious institutions that understand these issues in promoting benefit and service take-up.
An intriguing finding in the report is that there is a lower prevalence of impairments among black and minority ethnic disabled people of working age, but that over the age of 40 prevalence increases dramatically. What are the reasons, rather than hypotheses, for this increase in impairment among members of the BME disabled community who are over 40? I would be grateful to my noble friend the Minister if she would commit to look at the reasons as we could then look at prevention.
As other noble Lords have mentioned, issues arise around language barriers. The report highlights a further legacy: namely, the effects of having placed insufficient emphasis on the need to be proficient in English. Lack of language hampers the ability not only to access services and benefits but to take up many of the opportunities that are available in the UK. Whatever one’s views might be on spending public money on translation, I hope it is not contentious to say that in the future older people who are less proficient in English, and often therefore less well integrated, will require residential care. The report clearly highlights the increased needs of disabled people in black and minority ethnic communities as they age. Can we suddenly expect every person over the age of 55 who has little or no English to learn a new language at that stage? I doubt that. How will residential care homes adapt, given this ageing demographic of the black and minority ethnic disabled population? As schools cater for children with English as a second language, will we need residential care homes that cater for people who speak English as a second language? Have the Government anticipated this matter and what is their response to this ageing demographic issue? We are in the midst of the assessments for PIP, the replacement for the disability living allowance. Are the Government ensuring that language issues are not a barrier here? Will my noble friend the Minister outline the guidance that has been given to Capita and Atos, the head contractors?
It is easy to forget how difficult it can be for people who feel stigmatised, have language problems and are then faced with the language of bureaucracy and end up not claiming what they need. Before Christmas, I had the privilege of meeting a disability rights campaigner, Jane Young, who I think could give any adviser, even my noble friend Lord Freud, a run for his money as regards knowledge of the changes that we have introduced to welfare legislation. However, what struck me most was how upset she was when her disability meant that she was no longer fit for work, after having always worked up to that point. She exemplified a principle that I think rings true for most people—there are times when you give into the pot and times when you receive. It is a privilege to have paid into a system that supports people such as Jane Young.
My Lords, I, too, am grateful to my noble friend Lord Boateng for giving us this opportunity to discuss the problems of the estimated 1 million disabled people from black and minority ethnic backgrounds. As he has made clear, the Scope report makes a persuasive case in arguing that ethnic communities in particular are underinformed and poorly served. Their difficulties in accessing treatment are obviously worsened by problems with language, form-filling and bureaucracy and by simply not understanding the jargon of well intentioned specialists.
I strongly support Scope’s recommendation that a network of BME advocates be developed to improve the quality of communication that is so vital in defining medical conditions, patient needs and the nature of the support and treatment available from local commissioners and service providers. As the noble Baroness, Lady Browning, said, very little is simple when dealing with the range and complexity of disabilities, yet what we may experience as frustration and exasperation can deepen into despair for those most in need, especially if they are also socially isolated. Sadly, many of those questioned during research for this report claimed that they were stigmatised and isolated inside their own BME communities.
Of course, disabled people have been, and still are, stigmatised across our society, despite the progress made in recent years and the extraordinarily positive impact of this summer’s Paralympic Games. The Scope report also rightly stresses that cultural differences must be acknowledged and respected. Certainly, we must be very sensitive to them, but we must also be robust in constantly challenging attitudes that are rooted in prejudice or ignorance, whatever the cultural factors that nurture hostility to disabled people across the UK, whether those people are ethnic or otherwise.
Scope is a national disability organisation providing information and support, particularly to those with cerebral palsy. Cerebral palsy is the most common motor disorder, with two or three cases occurring per 1,000 births. In the UK, that adds up over the years to 100,000 or more sufferers. In perhaps 20% of cerebral palsy cases there is also a related condition generally defined as dystonia. Here I declare an interest as patron of the Dystonia Society.
Dystonia is a neurological condition that causes involuntary and sometimes painful muscle spasms as a result of incorrect signals from the brain. Dystonia can affect many parts of the body. The symptoms include painful twisting of the neck, what we call writers’ cramp, eyes clamping shut, limbs contorting or difficulties simply in speaking or eating. An estimated 70,000 adults and children in the UK have some form of dystonia, of which there are more than 30 different types. The experience of the Dystonia Society may highlight some of the problems that voluntary groups face in relation to those in the BME communities with less common disabilities.
When a disability is little known or rare, the problems of access to treatment faced by black and minority ethnic sufferers are further increased. First, the general lack of awareness of dystonic symptoms is even lower in BME communities. Secondly, since dystonia sufferers often struggle to have their condition properly treated, those from BME backgrounds bereft of support and advocacy risk further marginalisation in the provision of services. However, lack of awareness does not imply lack of importance. Although individual diseases may be rare, collectively they present a major problem for the National Health Service. It is estimated that rare diseases of some kind will affect about 6% of the UK population at some time, perhaps 3.5 million people in total.
On that calculation, perhaps 300,000 or 400,000 people from BME communities will suffer at some point from a rare disease. Unfortunately, many will continue to suffer in silence, undiagnosed and untreated, unless their problems are more actively addressed. Too often we lack the evidence to pin down these problems.
For example, with lesser known conditions, the incidence of dystonia is still uncertain because the epidemiological data are limited. Worldwide there have been some studies that suggest that its prevalence is similar across Chinese, Egyptian and Asian groups studied, but for our BME communities in Britain, such as the Afro-Caribbean community, the data are very limited. It is therefore quite possible that prevalence in some communities is higher than average. For instance, it is known that a gene that causes generalised dystonia—the DYT1 gene—has a disproportionate incidence among Ashkenazi Jews. Despite the good work done by Jewish Genetic Disorders UK to increase awareness of the condition, the Jewish community in the UK is probably not as well informed as that in the United States.
Other problem areas are delays in both timely diagnosis and access to specialist treatment. The average time to diagnosis for dystonia is still longer than three years. For BME communities, we suspect that the delays must be even longer, but again we cannot be sure because no data are available on times to diagnosis. Neurologists who work with groups of dystonia patients also report that participants are very largely white and British born. Similarly, the 3,000-strong membership of the Dystonia Society does not reflect the likely incidence of the condition in BME communities, and ethnic minorities make little contact with our advice line or information website. That is despite the commendable efforts of Dystonia Society staff and the 38 branches to increase awareness and engagement across the country.
The truth is that voluntary organisations like ours, which help those with rare diseases, tend to be too small and underresourced to do effective outreach work with scattered BME sufferers. The Dystonia Society and others like it would therefore welcome the opportunity to contribute their specialist expertise to, for instance, the national race equality strategy advocated by Scope. We are also keen to work within the new structures of the National Health Service, especially at local level, on targeted information campaigns to build awareness of rare disabilities and to develop more comprehensive databases to ensure fairer access to services.
We should support the call on the Department of Health to provide leadership in improving collaboration among local authorities, the new clinical commissioning groups, service providers and ethnic communities on all disability issues. The Scope report, with its extensive research and cogent analysis, includes a series of other recommendations that seem, at least to me, both practical and affordable. I hope that the Minister will agree.
My Lords, when I originally saw the debate I was not going to speak, but then I had a little thought. I am dyslexic and have talked in this Chamber about dyslexia probably far too often. Vested and self-interests have been declared so often. One thing that people who are dyslexic have in common is the great difficulty we have in accessing forms and form-based information on benefits and access to the next point. That is what drew me in, because 10% of the population are dyslexic, a percentage of whom come from black and ethnic minorities. Suddenly there is a group with a double whammy.
If we have to access something by filling out a form, which is how we do it, we are in trouble if we cannot do it. If people do not get the help that is offered—and let us face it, we can all agree that Governments rarely offer money or support services for any length of time if there is no demand or need—we will have problems. If we do not fulfil these needs, as the noble Baroness, Lady Berridge, said, those who need them most will not get them.
An expression that I am far too fond of using, which I shall use again now, is that if you are a disabled person it is generally reckoned that you will do okay if you select your parents correctly. Articulate people who know how to play the system, have good English written skills and can express themselves well in consultations get through well, on average, thanks to the work that has gone on in this place over time. We have embedded culturally the fact that help should be given and have given it legal backing. That is one of the truths of the system. Hence dyslexia is the middle-class disease. Middle-class people who are dyslexic spot it, and decide to do something about the problem. When they cannot get help from the state they usually buy it from elsewhere. Other disability groups have similar stories at certain levels.
We then get to a group that cannot do that. The problems multiply and we end up paying for that in other places. There is low economic activity and a higher prison population in the case of people with dyslexia, for example. Other groups—the hidden disability groups—share this problem, and the group of people whom we are discussing are all paying for the failure to get them out there. Indeed, it has been suggested that there are more mental problems among people in this group. If we take another group, part of which is in this one, and add the fact that someone cannot communicate well in either spoken or written English, should we be surprised that there is an extra problem when trying to access help that society has decided is beneficial to society as well as the individual? The answer is, of course, no.
The only debate that I had with myself is whether this is an individual cocktail or layers of difficulty each time. That is about as far as it has gone. It is a case of how we get through and how we access help. I am sure that the current Government will not say that we do not want people to access this as it would cost money in the medium term if not the short term, and would be against all principles of fairness. But how will we do it? Translation services are clearly vital to many of these groups, particularly if someone is a new arrival and cannot access the language, either written or spoken. There may be a case for not having translations of every document for everybody.
I would be much more reassured if I heard today that the Government will encourage small, user-led groups to do this work. If cultural awareness and sensitivity are there, they may well do a very good job. Other reports, not even in the pack provided by the Library, show a misunderstanding of what is available and what benefits are supposed to do. Incredibly well entrenched in some of those groups were misunderstandings about benefits, such as: we are not supposed to get them; they are not for us; they will do everything for us; and so on. If that can start to be addressed by using voluntary sectors or the smaller groups referred to, we will start to address the problem reasonably.
We are calling on volunteers to help us on this occasion, but if we can ensure that the Government guarantee that this takes place we will solve many of these problems of communication by making sure that help is there for those who need it and that they get it. This problem is not, of course, totally confined to this group, although the evidence suggests that it is more intense here. Making sure that we identify and bring information to those who need it is very important.
My second point, which will be my last one, is on the Government’s language and the briefing that came from Scope—not the report itself—and the fact that people are very worried about “red-tape equality assessments”, and so on. When sitting on the Benches in front of where the noble Lord, Lord Boateng, sits now, I had to deal with health and safety issues for my party. I came to the conclusion that everybody was against red tape in health and safety until their child was up the ladder. That might be slightly cynical but only slightly.
Something is red tape only when you do not think that you need it—it is just something to deal with. On occasions all Governments tick-box things and all Governments must fight against it. However, if an essential duty is being fulfilled by what is put forward, tick-boxing is necessary. That bit of red tape is needed to hold the bundle together. Unless we can make sure when we talk about this that the regulations are necessary and as simple and as straightforward as possible, we are in trouble.
I am hearing from the disability community an increasing worry about certain statements, such as, “We are going to get rid of these unnecessary regulations”. Can we make sure that we get rid of unnecessary regulations but not the legal duty that is there? That is what we are interested in. We can rewrite and make the regulations simpler and easier to understand, but let us not for one minute suggest that we are getting rid of the legal duty that is required and which most of us agree is essential for ensuring that we have a civilised and fair society.
My Lords, I thank the noble Lord, Lord Boateng, for introducing this debate and giving us the opportunity to consider the excellent Scope report and the issues contained in it, and bring them before the House to enable the Minister to respond. I also thank him for enabling us to pick up on any other related issues in the area of disabilities as they affect black and minority ethnic communities.
The challenge facing policymakers and decision-makers is to understand the multiple disadvantages being faced by black and minority ethnic disabled people, and to collaborate with community-based and community-led organisations to determine appropriate and effective responses. Following on from what the noble Lord, Lord Addington, had to say, this resonates well with how we involve people who are able to relate to those who have needs and how we help them to respond to these needs at the earliest opportunity.
Where available, the data show black and minority ethnic people having disproportionate adverse experiences of access to income, education and essential support services, in the job market and in utilising public facilities. When we add the disability characteristics, we find that the situation is considerably worse. Increasing numbers of BME disabled people are experiencing discrimination and disadvantages because of a combination of factors, including race, ethnicity, class, poverty, status and where they live. The latter is an important discriminatory feature that we must also consider.
The wide range of disabilities requires appropriate responses, whether the disabilities exist from birth, develop through disease or injury, or occur because of ageing and infirmity. My contribution is particularly concerned with two areas of disability. The first is that which is due to ageing and infirmity. The second regards mental illness. As they advance in age, more BME people are experiencing many forms of disability and impairment. My mother, who is 85 years old, disabled and bed-bound, is in the fortunate position of having care provided for her on a 24/7 basis. My siblings and I are able to make that provision without recourse to external involvement. However, many people are unable to experience that support. Many like her, with similar afflictions and who may not be able to obtain the same level of support, will more likely than not experience a diminishing quality of life in their latter years.
Quality of life and quality of care are essential components of growing old with dignity. As a society we are currently grappling to find solutions to the cost implications of making appropriate provision for the care needs of a growing elderly population with multiple impairments and disabilities. I have worked in old people’s and adult care homes with people with severe conditions, and I pay tribute to those who are carers. Occasionally we hear stories of where people have been let down by standards of care but on the whole we see in this situation committed and dedicated people helping others, whether in a professional capacity or on a voluntary basis. In the context of today’s debate it is important to acknowledge the work done by BME carers, both within the family setting and in voluntary self-help settings.
As the previous chair of an organisation called the Policy Research Institute on Ageing and Ethnicity, I had the benefit of observing at first hand for more than a decade the significant contribution of BME-led adult care organisations which reach out to BME elders across the country. Considerable work was done in outreach activities to make them aware of the increasing prevalence of dementia, so that the elders could be referred to services at the earlier stage of the condition. This work also addressed their multiple and complex health needs.
This is a good moment to remind the noble Lord, Lord Boateng, that he was involved in helping to launch a study with PRIAE in 1999, Managing Dementia and Ethnicity, which resulted in a film called “Dementia Matters”. The study has been distributed widely among educators and people in the profession.
Without minority ethnic, age or specialist organisations that cater for such groups directly, BME elders with disabilities would remain invisible and, worse, would still not be supported. The challenge for mainstream organisations, including large equality ones, is whether they are prepared to engage with and invest in minority initiatives and organisations. BME communities are part of British society. BME elders with disabilities are British, yet we see the dangers of parallel but unequal services developing, with different organisational resources, funding, capabilities and life spans.
That trend is even more accentuated in the area of BME mental health sufferers. Undoubtedly, in the area of mental health disability there are outrageous disparities. For example, the life expectancy of people from the UK’s African-Caribbean communities who come into contact with services under the Mental Health Act is reduced by a staggering 25 years, as they are routinely labelled schizophrenic or psychotic. Early intervention and culturally appropriate services remain at best sparse and at worst non-existent. There is an extensive body of evidence cited by Black Mental Health UK that indicates that the UK’s African-Caribbean communities are subject to the most coercive and punitive treatment, often with fatal consequences.
Deaths in custody and reduced life expectancy have blighted many African-Caribbean households. It is known that more than 50% of those who lose their lives in police custody are mental health service clients. The same data from the Equality and Human Rights Commission reveal that 20% of deaths in police custody involve black men, who represent less than 3% of the national population.
What is being done to safeguard BME disabled rights? Effective advocacy provision, particularly led by BME organisations, would be an essential requirement to assist in achieving fairness; this at present is lacking. Individuals being treated under the Mental Health Act, whether in hospital or in the community, have the right to access an independent mental health advocate to ensure that their rights are observed and that they are treated fairly. Black patients in detained settings do not have access to effective advocacy. In far too many cases, they are not even informed of this right.
Black Mental Health UK is deeply concerned about the effects of treatment to BME disabled people with mental health illnesses. Black people presented to the service are routinely labelled as psychotic and given high doses of anti-psychotic medication, which come with a raft of side effects that include irregular heartbeat, cardiac arrest, muscle and joint pain, jerkiness similar to the symptoms of Parkinson’s disease, severe sexual dysfunction, rapid weight gain, obesity, diabetes, heart disease and reduced life expectancy. These matters must be addressed as part of any overall strategy, and within the particular context of mental health.
I will raise one final concern: the presence of police, often in riot gear, on psychiatric wards. High-profile death in custody cases have reinforced distrust both of the police and of mental health services. It is necessary that there should be a consistent mechanism for monitoring deaths that occur after police restraint on psychiatric wards. Only in cases where there is a high-profile fatality and the family are vocal about the incident are such matters brought to public attention. It is right that the Minister should respond and say how we will seek to share information in an open and accountable way that will enable those who provide support services for those with mental health illnesses to be made aware of how they can contribute to ensuring that the latter’s rights are safeguarded.
My Lords, I, too, thank the noble Lord, Lord Boateng, for securing such an important and timely debate. I also thank Scope for the excellent briefings it made available, and the Equalities National Council for its very insightful report and studies.
There are at least 1 million disabled people from black and minority ethnic backgrounds in the United Kingdom. We know that many face considerable difficulties in their daily lives yet are unable to access the services that they need. We heard in the most recent census about the demographic changes in our society that mean that there will be many more BME disabled people in future. It is therefore important that provision and policies are developed in a timely way for disabled people who rely on these services.
Like the noble Lord, Lord Ouseley, I care for my disabled mother, who is 80 and whose language skills are not very good. She cannot read English very well, despite being in this country for many years. I do not know how she would cope without me. She probably would not be able to remain in her home without my family’s support.
I will talk today about the plight of disabled children from black and minority ethnic backgrounds. I declare a personal interest in the issue; I have a grandson who has disabilities and special needs. He receives support from a number of excellent voluntary agencies. The report rightly highlights the problem that BME disabled people’s needs and views have fallen between the two policy areas of disability and race equality. Finding ways to bring these two policy fields together is becoming more urgent and important for developing effective support. This is a classic example of how people from BME communities struggle and face double discrimination.
Yesterday I was in Grand Committee, arguing against proposals to make changes to the Equality Act and to the remit of the Equality and Human Rights Commission. The case was made very strongly by many noble Lords that we need to retain a strong and robust commission that retains its general duty to promote work that enables disabled people, as well as people from other protected groups, to participate in society with dignity. That phrase came across quite strongly yesterday. The commission should also retain a duty to promote and encourage favourable treatment of disabled people and to work towards eliminating prejudice and hate towards disadvantaged groups, which include disabled people from BME communities.
The noble Lord, Lord Boateng, asked an important question about the Red Tape Challenge that I will repeat because it is so important. When it was launched, I was very concerned that the Equality Act, a piece of primary legislation that affects the lives of so many people, was included in its remit. Will the Red Tape Challenge be used to reduce the public service equality duty? This is exercising and concerning many groups that rely on it.
Nearly half of all minority ethnic disabled people live in household poverty, compared with one in five of the population as a whole. Overall, we know that families from minority ethnic groups caring for a severely disabled child are even more disadvantaged than white families in a similar situation. Families’ experiences, needs and circumstances vary across ethnic groups.
Carers for people from BME communities are not always aware of the support that is available to them. A key way of addressing this would be for social care services to develop stronger links with local BME communities. I was struck by the case highlighted in the report of Anwar, a 16 year-old boy with complex physical needs and learning difficulties. It is a very good example, and sadly by no means unusual. For several years, Anwar lived alone in an unadapted flat above his family’s corner shop. He had no wheelchair and no way of getting down the stairs independently. He was not in school or able to access any services, and his only contact was with his family. Although they visited regularly, if he wanted to leave the house he had to be carried down the stairs by his brother. It was not until a neighbour told the family about a local support group, which he learnt about having met them at the local mosque, that Anwar’s circumstances changed. A support worker ensured that he was allocated a social services care package, given a wheelchair and eventually rehoused in an accessible ground floor flat, where he is able to live independently. As I said, this is a typical case.
Stigma is also a big issue that affects many minority communities. It can lead to social isolation, with families and carers struggling to cope behind closed doors for fear that they will be made social outcasts and blamed or in some way held responsible for their child’s disability. During my 16 years as a councillor in inner-city boroughs in Hackney and Islington with high levels of disability among BME communities, I spent much of my time on casework when people came to me to raise these issues. Many Turkish families came to see me because they had got nowhere with mainstream services. Because I could talk to them in Turkish, I was able to act as an advocate and try to get the most basic services for them. It was heartbreaking that they had to come to their councillor to get these services. What would have happened had I not been there? That is the test.
The report mentions that it is more usual for Muslim and Hindu communities to face social isolation and stigma. Recently I heard of a Turkish father struggling with his severely autistic child whose behaviour was extremely challenging. His wife had attempted suicide because of the strain of the situation and the lack of support. The father, whose English was not great, was the main carer and was unaware of the support that was available to him to apply for. Thankfully, he was referred to an excellent charity, Centre 404, based in Islington, where a Turkish specialist worker was able to help him apply for additional services such as much-needed respite support. We have heard how interpreting services and advocacy play a key role in this sort of case and in many others. Are the Government encouraging local authorities to ensure that advocacy is available to BME communities and carers? It can make such a difference in enabling a better and dignified life as opposed to an existence.
The examples I mentioned illustrate the reality that the mainstream social care system—my noble friend Lord Addington touched on this—is effectively adversarial. In effect, people compete for services. The most articulate and assertive—or those whose families or carers are the most articulate and assertive—are more likely to succeed and to get the right services. Specialist knowledge and research is also needed into ways of accessing support. For many families and carers from a BME background, it is incredibly difficult to navigate through the system to get the additional support that can make such a difference to their life chances and to their ability to fulfil their potential. Stigma and social isolation are widespread among carers for the disabled from a BME background, especially women.
The report highlights the importance of services operating at local level having close relationships with community groups such as mosques.
One of the key recommendations, which has already been mentioned, is that following the UN Committee on the Elimination of Racial Discrimination there have been recommendations from Scope and other race equality groups that the Government develop a national race equality strategy. I want to underline the importance of this and ask the Minister if this is being taken seriously. These issues urgently need national leadership. Some of the concerns that I and others have raised are that, going by the proposals to reduce the duties that I mentioned earlier, the present mood music and signals are not encouraging. I will also ask the Minister about equality impact assessments. When producing new policy or legislation, as recommended, will these important matters continue to receive support?
My Lords, people from BME communities are significantly under-represented in the uptake of learning disability services. This is despite the much higher prevalence of learning disability in certain BME groups. For example, it is up to three times higher than average in some south Asian populations. It is also higher than average in the African and Caribbean community. The number of people with learning disabilities from minority ethnic communities is predicted to increase substantially over the next 20 years.
Research shows that minority groups have a different experience of mental health services and different outcomes from treatment compared to the white majority, as explained by my noble friend Lord Ouseley. The noble Lord’s comments also apply to people with learning disabilities who also have mental health problems. Valuing People Now, the Government's three-year strategy published in 2009 for people with a learning disability, spelt out the changes needed to make sure that the most excluded groups would benefit fully from health and social care services. I agree with many other speakers that failing to take into account differences in race, religion and cultural identity is the same as ignoring the needs of what can become a vulnerable and excluded group.
Black and minority ethnic groups have been shown to be at increased risk of mental health problems and those from black communities are more likely to be admitted to hospital than those from other ethnic groups. There are various reasons thought to contribute to this increase. For example, for first generation migrants, the actual event of migration is often a traumatic occurrence with major disruptions to family and other lifelong attachments. Many have difficulties adapting to a new culture. Migration is in itself a risk factor for psychiatric illness, particularly psychosis. However, following migration, communities can experience other challenges and insults that can further predispose them to mental health problems and subsequently maintain them.
Some have uncertain asylum status, living in limbo for several months or years while their application is considered, and rejection of asylum may lead to significant mental health problems. Although 90% of asylum applications made in the United Kingdom are rejected, the majority stay on, often because they have no passport or their country of origin will not take them back. Those allowed to stay have the same rights as citizens, but the experience of earlier traumatic events, coupled with new problems related to acculturation, may impede their uptake of services. Several studies, including one by the Leicestershire Learning Disability Register, found that people with learning disabilities from minority ethnic communities have similar levels of mental health and behaviour problems, but that their carers experience significantly more stress and receive less support than their white European counterparts. Low household income and more than one person with a learning disability in the household were also associated with high carer stress. It is perhaps significant that one study found that 19% of south Asian families have more than one child with a learning disability.
Differences in perception of mental health within various cultures and poor knowledge of availability of services can also significantly influence the health-seeking behaviour of people who have mental health problems and individuals with learning disabilities or their families. Some of these barriers are easier to overcome than others. Some take time and dedication and a truly person-centred approach—no two service users are the same. All available research shows consensus in terms of a lack of awareness of services being a major barrier to people from minority ethnic communities accessing care. Mencap and the Institution for Local Government found that families and carers from BME communities knew little about the services they could use or how those services operated and what their rights were. Information about services was so often found to be inaccessible and not in the right language. Language and communication difficulties present problems for potential service users and their families in terms of accessing and using services. Often clinicians have to rely on a family member to interpret and this can lead to further problems in terms of confidentiality and disclosure of information, which may be particularly concerning if there are safeguarding issues.
It may also be the case that family members who interpret select the information they want to disclose, thus withholding important information. When I was acting in clinical practice, I certainly had that experience. Even when professional interpreters are used, families may be hesitant to disclose personal or sensitive information via an interpreter from that same small community. Cultural factors and belief systems may have powerful influences over how families respond and may have significant impact on how or if support is sought. Some cultures may have different ideas about the cause of a disability and choose to seek more traditional healing methods. They may not be interested in exploring western medicine or western educational, psychological or rehabilitative programmes. They may even misunderstand the concept of learning disability and expect a “cure” for their family member's problem.
Research by Mencap showed that many families and carers feel isolated and powerless. A common misconception is that people in BME communities get a lot of support from extended families—which sometimes they do—and therefore need fewer services, such as respite. One professional working in learning disability support within a predominantly Bangladeshi community said:
“The shame and taboo surrounding learning disability makes it difficult for mothers to get help and support. They get little practical support from their families and little emotional support either. The situation is so bad that mothers are more likely to seek help from agencies that are outside their community rather than from Bangladeshi specialist agencies”.
Family roles and dynamics vary greatly across different cultures. Within some cultures, family structures and relationships are hierarchical and women can have a very different role from that in western cultures. Consanguinous unions may be acceptable and commonplace and may contribute to the increased prevalence of learning disability and other severe disabilities. If there are clashes between the views of families and professionals as to which decision is made in the best interests of the patient, a family may subsequently avoid engaging with services. A colleague gave me an example: she was requested by the forced marriage unit to conduct a capacity assessment for consent to be married. The man was a Pakistani gentleman with moderate learning disability who had been taken to Pakistan a couple of months earlier to be married. Although the man was clearly very fond of his wife, he had little understanding of the concept of marriage or of sexual relationships. His parents believed that the marriage was in his best interests and my colleague formed the view that interference by professionals would have caused great conflict between the family and services, and possibly resulted in future non-engagement with professionals.
Currently, many services lack appropriate provision for people from BME groups with learning disabilities. They may be culturally insensitive, not taking into account issues such as the gender mix of services. Many families prefer their disabled female relatives to be cared for in a female environment. Other services perceive BME communities as a homogenous group and may not take into account the many differences found between different communities and fail to identify service users as individuals with their own set of unique needs. There are many incidents of people falling through gaps in the care system. For example, the eligibility criteria used by services mean there must be a clear history of developmental delay. However, such histories are often not available in first generation migrants and problems in language and lack of educational opportunities in their country of origin makes such assessments even more complicated and sometimes invalid. People may be lost as follow-up, due to frequent changes of address during transition from child to adult services. Improving services requires a considerable amount of flexibility from providers in order to engage with the various minority communities effectively.
I want to end by thinking about the importance of cultural competency as an essential component to our services. I hope the Minister will agree above all that a person-centred and culturally competent approach will be key to the success of services in the future.
My Lords, I, too, congratulate the noble Lord, Lord Boateng, on securing this important debate and on his excellent speech highlighting disability issues, which are causing major concerns to the black and ethnic minority communities across the country. These concerns of inequality and the lack of understanding of needs are clearly outlined in the Scope report, as we have heard throughout the debate.
I should like to concentrate on one particular area covering those who suffer from sickle cell disorder. I declare an interest as a patron of the Sickle Cell Society. My contribution is based on evidence-based statements from experts, which are the experiences, opinions and views of the Sickle Cell Society’s stakeholders—that is, the professionals, service users and user groups from within the networks of the Sickle Cell Society and the UK Thalassaemia Society.
I was dismayed by the relevant evidence sent to me which expressed the frustration faced within the BME community by those suffering from sickle cell and the challenges posed by the appalling response in addressing the needs of BME people living with disability.
Sickle cell disorder is not a visible disability but its nature affects patients almost from birth and then has a marked social impact, including an inability to work, early death, stigma attached to disability, the need for repeated, unexpected admissions and a severe reaction to opiates, which are often given in error by medical staff, who in many cases are unfamiliar with the condition.
There are a number of key issues that I should like to cover which I believe will show just how necessary it is for action to be taken and for urgent consideration to be given to sufferers with this disability. BME people living with sickle cell suffer from the specialised nature of the disability that is unique to sickle cell sufferers. As I have said, the disability is invisible and varies between and within individuals. Feedback from the sector clearly identifies that those conducting the statutory assessment of disability need to be aware of these issues. A report by those dealing closely with sickle cell sufferers concludes that those with the condition almost always fail the initial statutory assessment that channels candidates through the Government’s Fair Access to Care Services, which is required for most disability welfare support entitlements.
Research has also shown that an inhumanity impact is experienced by sufferers. The loss of welfare entitlements is increasingly reducing people with disability as a result of sickle cell disorder to exist in inhumane living conditions. This social justice failure is a serious indictment of our society. Evidence also shows that such is the stigma of disability that some people would rather not undergo the ordeal of the label, despite the benefits to which it may entitle them, assuming that they are able to successfully brave the challenging FACS assessment.
There is also an NHS cost impact because, as a result of wrongful assessment under the FACS test, sufferers are forced to depend on acute hospital services, with huge cost implications for the NHS budget.
Prescription charges are another big issue that have a profound effect on sickle cell patients. A regular supply of medication is crucial. Evidence shows the beneficial effect of hydroxycarbamide medication in reducing the number and length of hospital admissions in this patient group. This clearly represents NHS cost savings as well as increased patient life expectancy. However, because of high prescription costs, many patients decline medication or frequently run out of supplies, making treatment ineffective and resulting in costly A&E attendances and hospital admissions. This is because the severe nature of the disease and complications may result in prolonged admissions, exchange blood transfusion and costly intensive care.
I ask my noble friend the Minister whether the Government will consider the idea of all sickle cell patients being exempt from prescription charges. The number will be small as, of the 12,500 sufferers, 60% are children and some of the adults are on welfare benefit, so it will mainly include those in work, who are often low paid or part-time owing to the nature of the disorder and its impact on their ability to study and work full-time.
There is some anxiety among those involved with sickle cell services that the complexity of the services needed effectively places them largely outside the scope of the clinical commissioning groups. Many are concerned about the type of policies that will be in place to ensure that a patient-centred, integrated approach to care engages primary care and community interests across health, social and community care. This is to help to reduce morbidity, needless hospital care and the health inequalities experienced by this seriously marginalised sector.
There are expectations that not only CCGs but local health and well-being boards should aim to reflect the make-up of their respective client communities. So, given that the steady establishment of CCGs and the view that community provision of sickle cell disorder management have a major role to play across the country, especially in high-risk areas within CCGs, can the Minister tell the House what priority is being given by CCGs to people in the sickle cell and thalassaemia community, who are feeling concerned, vulnerable and anxious about the situation and their future?
As yet, there is no cure for sickle cell and more research is needed both for a cure and for the treatment of current sufferers. The existing treatment involves a form of chemotherapy, which can have harmful side effects, such as damage to the immune system. Fortunately, Sparks, a charity which provides funding into research for childhood diseases—I declare an interest as a trustee—is funding a research project that aims to investigate the possibility of a safer, less toxic and more targeted therapy. However, in the mean time, there needs to be widespread education and awareness among those who assess the level of disability of sickle cell sufferers. They need to be made more aware and educated about the situation faced by people living with sickle cell and its associated conditions.
The Government also need to seriously improve the awareness of the wider population about the plight of people living with this inherited blood disorder and the disabilities that they may be facing, quite often invisibly so.
I know that the Sickle Cell Society, the UK Thalassaemia Society and the UK Forum on Haemoglobin Disorders would be more than willing to meet the appropriate government departments and agencies to discuss how they can work together to address the serious concerns that I have highlighted. I hope that this offer will be acted upon.
As the last US election showed, BME communities vote for people who they consider address their needs and concerns. This should be food for thought for us on this side of the Atlantic. I look forward to hearing my noble friend’s response, as I know that she is always sympathetic to inequality issues and, like me, strives towards a just and fair society.
My Lords, I am pleased to have the opportunity to speak in this debate and I thank the noble Lord, Lord Boateng, for initiating it.
When I read the well-researched report produced by the charity Scope, and several others that I have looked up, and the many obstacles that disabled people in the black and minority ethnic communities have to face, it led me to reflect back to the days of discrimination based on colour, how long it took for us to address the issue and the legislation required to get rid of it.
Studies now show that people with disabilities—black, ethnic minority and white—face similar discrimination, but those from black and minority ethnic communities face further discrimination based on a lack of understanding by those who commission and provide services. Other noble Lords have already mentioned examples, such as the need for better and appropriate communication, the lack of understanding of the stigma attached to disability in some cultures, health services both for physical and mental health, and the failure to understand the differing needs of black and minority ethnic people with disabilities.
We have heard on several occasions in this Chamber how people with disabilities are discriminated against, particularly from the noble Baronesses, Lady Campbell of Surbiton and Lady Grey-Thompson. The noble Baroness, Lady Grey-Thompson, described how she becomes invisible when trying to get a taxi or catch a bus, despite being one of the most recognised faces in the land.
The Scope report findings confirm that there is discrimination against people with disabilities in black and minority ethnic groups. It says:
“We found little evidence of direct racism in service provision and encountered no reports of staff being explicitly discriminatory. We did find evidence of discrimination on the grounds of disability … Consistent low-level discrimination can have a serious impact on people’s wellbeing. Non-discriminatory practice is about more than accommodating cultural preferences”.
The Scope study also identifies several issues relating to health—issues that commissioners and providers of health services should be aware of, and I hope that the Government will make sure that the Department of Health notices this report. It goes on to state that,
“black and minority ethnic disabled people are … less likely to access healthcare services. Evidence shows that they suffer from poorer health, have a shorter life expectancy and yet are less able to access care than the majority white population. Despite large amounts of research, and a variety of local and national strategies for change—including the … Delivering Race Equality in Mental Health initiative introduced in 2005—these problems remain.
Research … indicates that only a minority of the Pakistani and Bangladeshi disabled people … interviewed had had any contact with hospitals, physiotherapists, and specialist care”.
The only people who fare well in the report are GPs, who,
“provide a notable exception to this trend, and numerous studies report that GP surgeries provide a key access point to services for BME people … Yet there is … evidence to suggest that … prejudices are alleviated by close contact with medical services. Indeed, western medical paradigms may provide some relief from stress for families burdened by feelings of shame or stigma”,
in some cultures. The report also notes several recommendations for commissioners and providers of health, and, as I said, I hope that the Government will take notice of them.
I should now like to devote a few minutes to allude to the problems faced by black and minority ethnic families with a severely disabled child. Before I do so, I declare an interest as a trustee of the White Top Foundation, which over the years has given tens of millions of pounds to make life better for families with a severely disabled child, and to care for these children. I am pleased to say that this charity continues to carry out this work.
The study I will refer to was funded by the Joseph Rowntree Foundation and was carried out by the University of York and the University of Bradford. It used the same methodology that it had used to study white families with severely disabled children. The findings, which were quite salutary, were as follows:
“Families from ethnic minority groups experience even greater disadvantage and difficulties in caring for a severely disabled child than their white counterparts”.
The study was,
“based on interviews with 600 ethnic minority parents of severely disabled children”,
throughout England, and, as I said, it was carried out jointly by researchers at the two universities. They found that:
“Most families had net incomes below £200 a week. Those experiencing the greatest economic disadvantage were lone parent families—a group that included two out of three Black African/Caribbean families … Levels of employment were low, including three out of four mothers who had no work … Fewer parents were receiving Disability Living Allowance or Invalid Care Allowance compared with white families previously surveyed. Although all the ethnic minority parents interviewed were caring for a child with severe disabilities, they were less likely to have been awarded benefit at the higher rates. Parents who understood English well had much higher levels of benefit take-up than those with a limited understanding. Among one in three Asian parents who said they needed translation help when talking to health and social care professionals, a large minority had not been provided with an interpreter. There was little evidence to support stereotypes—
which often develop among social workers—
“suggesting that ethnic minority families generally benefit from extended family support”.
The study found that,
“Fewer mothers received practical and emotional support from partners than white counterparts … Ethnic minority parents reported that their disabled children had many more unmet needs than white families in the earlier survey. Half identified seven or more areas where they needed more support than currently provided. This included help with their child’s learning, communication and physical abilities, access to leisure opportunities and learning about culture and religion”.
As Professor Waqar Ahmad, who was co-author of the report, said:
“We know from the previous national survey that financial difficulties, unmet needs and inadequate support networks are common problems among families who care for severely disabled children.
But this research reveals that there is an added depth and intensity to the problems faced by ethnic minority families which policy makers must take on board as a matter of urgency. Poor communication with professional care services, lack of recognition of parents’ needs, as well as lack of support and high levels of economic disadvantage, have left too many of these families living ‘on the edge’”.
My question to the Minister is: will the Government’s disability strategy include implementation plans involving all the various government departments, and how will the implementation be monitored?
As noble Baronesses speaking in this debate outnumber noble Lords by three to one, I dare say that women in all communities are more likely to be carers of disabled children. However, for BME women, the experience of social isolation is disproportionately high. Reducing social isolation can be achieved through greater community involvement in the design, commissioning and delivery of services. What steps will the Government take to enable greater community involvement, particularly of BME groups, in the co-design, commissioning and delivery of services?
My Lords, I declare my interest as vice-president of the RNIB, and I hold a number of other roles in the disability sector that are declared in the register. I am particularly glad to have this opportunity to make a brief contribution in the gap, because the Minister will recall that only yesterday, with the noble Baroness, Lady Hussein-Ece, we debated the Government’s efforts to strip measures and resources that support the equality agenda out of the Equality Act and the EHRC. I cast doubt on the Government’s commitment to the equality agenda. I therefore congratulate the noble Lord, Lord Boateng, particularly warmly on securing this debate today, for nothing could demonstrate more cogently that I was on the right track than this excellent report.
It is worrying that the Government seek to review the use of both the public sector equality duty and equality impact assessments, potentially undermining the framework for making progress in addressing the needs of black and minority ethnic disabled people. It is of great concern that the review has been announced as an outcome of the Government’s exercise to cut red tape.
In response to a letter from Doreen Lawrence, the mother of the murdered teenager Stephen Lawrence, the Prime Minister and Deputy Prime Minister stress the need to make the promotion of race equality central to the way that public authorities work. The public sector equalities duty should be seen as a powerful tool for achieving this. The review should happen, as originally planned, in 2015, when there will be sufficient evidence of whether the duty is working as intended. The Prime Minister’s recent statement that it was time to call time on the equality impact assessments reinforces my concern that equalities issues are slipping down the Government’s agenda.
Given the evident need to give more priority to the needs of black and minority ethnic disabled people, it is worrying that the Government are looking to reduce the ability to determine the impact of public policy on protected groups. Although the Prime Minister may consider them bureaucratic nonsense, equality impact assessments are in fact an essential means of ensuring that policies do not adversely affect those groups that were already disadvantaged. This is not about tick-box stuff, as the Prime Minister calls it; rather, it is a means of ensuring that policymakers have the right information to make informed decisions.
The Scope report highlights the fact that the BME disabled population is growing rapidly. In September 2011, the UN Committee on the Elimination of Racial Discrimination criticised the Government’s failure to address racial equality and introduce a national race equality strategy. The refreshed disability strategy to be published in May, linked to a race equality strategy and underpinned by a joint implementation plan and bringing together the Office for Disability Issues, the Government Equalities Office and the DCLG, presents an excellent opportunity to address the issues facing BME disabled people that have been rehearsed in this debate.
My Lords, I start by thanking my noble friend Lord Boateng for bringing forward this debate. I asked a Question about this report in the House when it was first published, so I am very pleased that we have been able to have this debate today. I congratulate Scope on an excellently researched report.
Almost everything that can be said about the importance and urgency of this issue has been eloquently said by most noble Lords; indeed, the noble Lord, Lord Low, has pretty much stolen my thunder. I intend to ask three questions about the report, and I am putting them in the context of what the Government are doing to their equality strategy at present, which was also alluded to by the noble Baroness, Lady Hussein-Ece. The Government’s review of the public sector equality duties and equality impact assessments has the potential to undermine the framework for making progress in this area, and we need to be quite clear about that. Indeed, that might answer some of the questions that the noble Baroness, Lady Berridge, had when she was wondering why this might have become a party political issue. While it ought not to have become a party political issue, this is possibly the crux of why it has become one.
Scope has been very concerned about the potential shift within government to a more watered-down commitment to assessing equality implications as a crucial part of decision-making. The noble Lord, Lord Low, referred to the fact that the Prime Minister said to the CBI that the Government were calling time on equality impact assessments, and indeed a statement from the Minister at the DCLG just this week has said that that department is informing local councils that equality impact assessments are not mandatory. That is the unhelpful context in which this discussion is taking place.
If we see a diminution in the commitment to monitoring, consulting and impact measurement, that also needs to be seen in the context of the impact of the welfare reforms that the Government are pursuing with regard to disabled people. Here is just one fact: disabled people have seen a drop in income of £500 million since the emergency Budget of 2010, and recent reports have shown that cuts have ranged from £200 to £2,065 in a typical disabled household over the past year.
Despite widespread criticism, the Government have refused to monitor the impact of their welfare reforms as they are implemented in order to understand how they affect disabled people and their families and mitigate any adverse impacts where possible. Impact assessments should consider not just aggregated impacts from one specific policy but the cumulative impact of several policies on individuals and their families. It is in that context that I pose my three questions.
First, the Government’s Fulfilling Potential—Next Steps White Paper, on their approach to the forthcoming disability strategy, emphasises the need to build better linkages between government departments and agencies to work together to achieve shared objectives for disabled people facing multiple disadvantages. Will the Minister confirm that this will include the development of a joint implementation plan between the Office for Disability Issues and the Government Equalities Office as well as other government departments, as recommended by Scope?
Secondly, following criticism from the United Nations Committee on the Elimination of Racial Discrimination, what plans do the Government have to implement a national race equality strategy? What plans do they have to ensure that the overlaps between different equality characteristics in future equality impact assessments are recognised, given that the needs of BME disabled people are not easily captured in a system designed to assess only one single equality characteristic? Can the Minister clarify the means by which the Government will assess the equality implications of their proposed policies on protected groups, including disabled people, in the light of the Prime Minister calling time on equality impact assessments?
Thirdly, does the Minister agree that in the light of this debate, the public sector equality duty, which is currently under review and includes the race equality duty, is as vital now as it has ever been and should not be equated with bureaucracy and red tape, as the Government are so often seen to do?
My Lords, I am grateful to the noble Lord, Lord Boateng, for securing this debate and the opportunity that he has provided for us to discuss the important issue of how to ensure that all members of society, from all backgrounds, are able to access the services and support that they need.
I am grateful, too, to Scope and the Equalities National Council for the central report that we are debating today. It brings to the issue a great deal of detail and much needed information about the black and minority ethnic communities in particular, and the difficulties that they face in receiving the support that they require.
A wide range of topics has been raised in today’s debate, but what underpins much of what noble Lords have said is that we must provide policies and services developed and delivered based on the individual.
In responding to the debate, I shall provide some context and talk first about the Government’s equality strategy. As a country, we have come a very long way over the past 50 years, but too many people’s life chances still depend on who they are or where they come from. Our equality strategy set out our vision for a strong, modern, fair Britain built on two key principles: equal treatment and equal opportunity for all. We are moving away from the identity politics and categorisation of the past and instead focusing on equal opportunity for everyone—most importantly, recognising individual needs.
I believe that this approach is very much in line with the recommendations in the report that we have been debating today that services delivered locally should follow person-centred principles, delivered in ways that take into account the needs of individuals, utilise community resources and are responsive to the local community.
I shall focus on the disabled strategy. Part of our commitment to removing barriers is about enabling disabled people to fulfil their individual potential and, by right, play a full role in society. As a country, we have a strong record of provision for disabled people. Here I am talking not just about this Government but about this country in the past. We are a world leader for both disability rights and independent living. The recent OECD statistics have shown that UK spending on disability as a proportion of GDP is nearly twice the OECD average—more than the US, Germany, France, Italy, Spain and Japan. This Government are proud of that and will ensure that the money that we dedicate to disabled services supports those in the greatest need, as well as in ways that are important to all disabled people: providing them their right to live independently, and to have greater opportunities to work. On that point in particular, in the spending review we have protected the annual budget of £320 million for specialist disability employment programmes. These programmes focus on removing barriers to work and supporting those with extra needs to work. In saying that, I recognise the point made by my noble friend Lady Browning about the challenge that this presents for some people.
Our aim is to open up more opportunities for all disabled people, and although government should provide the strategic leadership needed to achieve this aim, we cannot do it alone. In answer to a point made most recently by the noble Baroness, Lady Thornton, but also by many other noble Lords, we are working across government and with disability organisations to develop plans for action and mechanisms for monitoring progress which we will publish in the spring. As part of that, we are working and consulting with the widest range of disability groups, such as Include Me Too, the Afiya Trust and the Equalities National Council. We are making sure that the voices of BME disabled people are heard and have input to our disability strategy and, importantly, to the action plan that will flow from it. As part of this, we are setting up a new partnership—a disability action alliance— to bring disabled people and their organisations together with public, private and voluntary and community organisations to help shape and deliver what disabled people want.
I have already referred to the Equalities National Council, as have other noble Lords, and it is the joint authors of the report that we are discussing today. It and others are working with us to establish the alliance and have already identified some potential actions for us to take forward. These include, for example, building on the work they are doing to mentor BME prisoners with mental health conditions. If I may, I shall use the particular point about mental health conditions because I think that it helps illustrate our approach to quite a wide range of different areas. I am sure that noble Lords will understand that I am not able to respond on those areas in great detail.
The ENC is working with the Office for Disability Issues on the Disabled People’s User-Led Organisations programme and has been awarded £25,000 to create an ambassador programme. As part of that programme it will raise the profile of good mental health experiences and positive outcomes and help reduce the stigma attached to mental health conditions. The plan is also to give disabled people the confidence to approach mental health services earlier and be treated by GPs and community health teams before they reach crisis point, where interventions are more traumatic and punitive.
The noble Lord, Lord Ouseley, spoke at some length about the issue of mental health and BME people. He raised a number of issues, but on his specific point about excessive detention of BME people under Section 136, we are developing a programme of work with the police to improve the experience of people who are removed from a public place to a place of safety by police using Section 136 of the Mental Health Act. We will make sure that this takes account of BME people and that the solutions suggested are evaluated for any differential impact on BME groups. From the briefing that I have had in preparation for today’s debate, I am aware that there is quite a lot going on in this area. So, if I may, I will send the noble Lord a follow-up, because I think that I can provide him with some more information which I hope will serve to address some of his concerns.
The noble Lord, Lord Boateng, the noble Baroness, Lady Masham, and indeed many other noble Lords, raised the point about language barriers in a wide range of contexts. We recognise that English language skills are fundamental to people’s ability to participate in our society, to break down barriers and to do the everyday things that we all take for granted—and just basically to get on. It is important that we are clear about the distinction drawn between the automatic translation of public authority documents and the training that is available and the services that might be provided to people with specific translation needs. People refer to comments by my right honourable Friend Eric Pickles, but he was talking about automatic translation of public authority documents and the fact that they can be expensive and entrench segregation. That is separate from the specific issue of translation and cases in which someone has an individual need.
The Government have provided more than £8 million to 35 English for speakers of other languages providers, mainly in FE colleges in areas of England where there is the highest demand. The Government fully fund this provision for those on jobseeker’s allowance and employment support allowance in the work-related activity group. Under this general heading of translation, my noble friend Lady Berridge raised the issue of language barriers in the provision of PIP—the replacement for DLA—and what guidance was being given to the service providers. As she was kind enough to give me advice warning of that, I am able to respond to her in a bit more detail. I hope that my answer to her question will help give an indication of our approach to other noble Lords who raised the same point but in a different context.
We have committed to making the assessment process as accessible as possible to those with communication barriers. We have built this into our contractual arrangements with both assessment providers. They will make letters and other materials available in other languages on request, and will meet any reasonable request to accommodate claimants with additional requirements, such as provision of interpreters. If an additional requirement is identified on the day of the consultation then the provider will rearrange the appointment.
My noble friend also asked whether residential care homes will adapt to reflect the ageing demographic of BME disabled people and of those who cannot speak English or who have English as a second language. I will write to her specifically on that point. However, it is worth emphasising—and again, I hope that this point will give noble Lords wider comfort—that through the Health and Social Care Act 2012, for the first time ever, there are specific legal duties on NHS commissioners and on the Secretary of State for Health concerning health inequalities. That is something that exists now that did not exist before.
Many noble Lords raised a point which is in the Scope report regarding whether the Government should develop a race equality strategy. We know that particular issues can be exacerbated by race and noble Lords have pointed to some of them, including educational attainment, unemployment and ageing, as we have just been discussing. We do not think that dealing with these problems is easy, but we believe that the best way to make progress is to tackle the root cause and not the symptoms. That requires a new approach and a single equality strategy—one that is based on underlying principles and that moves away from treating people as groups or “equality strands” and instead recognises that we are a nation of 62 million individuals. In saying that I am reinforcing what I said at the beginning and what underpins most of what has been said today—that what we are looking for in our approach to all these issues is individual attention and being able to treat people in that way.
This approach not only requires but forces joined-up work across government and requires us to focus on the problems that an individual is facing. Perhaps I can give noble Lords just one example under the heading of employment. We have done a lot in south London where our Jobcentre Plus provision is working with a group in Brixton to support work experience candidates. In Birmingham, where more than 83% of the population is from a minority ethnic community, Jobcentre Plus and the city council have formed a co-designed project with a range of BME community groups to support local people.
It is worth me putting on record that the number of ethnic minority people in employment is more than 3 million for the first time ever, which is 380,000 higher than the figure in spring 2010. Claims for JSA have fallen faster among young black men than for any other ethnic group over the past year.
The noble Baroness, Lady Thornton, the noble Lord, Lord Boateng, the noble Lord, Lord Low, and my noble friend Lady Hussein-Ece all referred to equality impact assessments. Let me be absolutely clear on this. The Equality Act was designed to ensure that the needs of people are taken into account when we change or develop and implement a new policy or service. Impact assessments cannot and must not be a tick-box exercise. Completing these forms has never been a legal requirement. Having due regard to equality when forming policy and services is the legal responsibility on all public bodies; and that is not changing. Neither is the requirement to be able to demonstrate that it has happened.
What we are reviewing, because I believe that we owe it to everyone to keep strengthening our approach in this area, is how the public sector duty operates. We want to ensure that it is delivering, as effectively as it can, what all of us believe in and want: equality, fairness and the elimination of discrimination as policy is made and services designed.
Several points were raised by noble Lords which I will do my best to get through quickly now, although I know that I will have to follow up several of them in writing. If I fail to address them now, I will of course ensure that I follow them up afterwards.
I start by referring to a point made by the noble Lord, Lord Boateng, about a meeting between Ministers, the EMC and Scope. To be honest, I am somewhat confused here, because I have been advised that the Minister for Disabled People met both organisations last autumn. I will find out what has happened there and, obviously, follow up in writing on that point.
My noble friend Lady Browning talked about local commissioning and suggested that I provide some explanation about what is happening in that area for the benefit of all noble Lords. That I will do. In doing that, I hope that I can address the specific points raised by the noble Lord, Lord Macdonald, about dystonia.
My noble friend Lady Benjamin referred to sickle cell. Again, I will certainly look into that after the debate and follow that up in writing to her. My noble friend Lady Tyler and the noble Lord, Lord Patel, in particular, among other noble Lords, talked about disabled children and the impact on those from the BME community. They referred to the Children and Families Bill. As that comes from the Department of Education, which is not a department that I work with, let me look at what is expected in that area and I will of course follow up.
I draw to a close. Another point made in the course of today’s debate was about role models and how we inspire people. Reference was made to young people. The noble Lord, Lord Boateng, and others referred to the Paralympics and the whole atmosphere and culture created out of that fantastic event back in September. I remember clearly, just as we led into the Paralympics, the noble Baroness, Lady Grey-Thompson, saying that she was concerned that because there would be fantastically successful, brilliant and able Paralympians who would win medals, we should not give the impression that all disabled people could do so. For me, what was so important was that the Paralympians were role models not only to disabled people and people who have a great interest in sport; they were fantastic role models to all of us. We, the able-bodied, those of us who do not face barriers that other people face, should reflect on what we could achieve if we approached life in the way that many of them do.
We are working as a united Government to break down barriers of disability, race, religion, gender, age and social background. We are taking a personalised approach to enable people to reach their potential, rather than assuming that one size fits all. We believe that that mechanism best responds to individual needs, local circumstances and, in our view, is what works best to achieve the equal society that we are all striving for.
We have had a good day. I have listened and learnt a lot. I am grateful for this opportunity to share some information about what the Government are doing. I look forward to your Lordships holding me and my colleagues in government to account for delivering on that vision regularly over the rest of the Parliament.
My Lords, the noble Baroness is right: there are many role models in the disabled and black and minority ethnic communities. Our concern is that they should be role models for what they are, not for their success in overcoming the barriers that they have had to face because they are black or minority ethnic or because they are disabled. This has been an important debate. Members who have spoken on all sides of the House have demonstrated a depth of experience, knowledge of the subject and passion that is truly inspiring to us all. I am grateful to the Minister for her willingness to write to us to address the detailed questions that many Members of the House have raised with her, and I urge her to adopt the suggestion of the noble Baroness, Lady Browning, of lodging all of those in the Library, so that we have a comprehensive response of the Government to the debate and the report.