Disability Services

Baroness Hussein-Ece Excerpts

Thursday 10th January 2013 Lords Chamber

[Baroness Hussein-Ece]

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?