Disability Services

Baroness Tyler of Enfield Excerpts

Thursday 10th January 2013 Lords Chamber

[Baroness Tyler of Enfield]

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.