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Social Information on Disability
Black & Minority Ethnic Communities

“Making disability information accessible to individuals from Black & Minority Ethnic groups”


A review of current findings and thinking


June 2008



SID (Social Information on Disability)
as part of an EHRC (Equality & Human Rights Commission) funded project

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Specific groups facing dual disadvantage in accessing information


Rural communities

The 1997 Listening to the Voice report for BEMIS (Black and Ethnic Minorities in Scotland) was a major piece of work that highlighted the importance of establishing an infrastructure for the black and ethnic minority voluntary sector in Scotland, with the aim of tackling the inequalities they face and empowering them.

This research found a correlation between rural areas and lack of black and ethnic minority organisations.

The provision of advice, support and information was cited as one of the four common reasons for the establishment of organisations (along with meeting unmet needs, developing culturally sensitive services and maintaining heritage).

The study also found that organisations were accessing mainstream support organisations in a piece-meal fashion, and surmised that this could be because organisations either do not have enough information as to what support organisations such as SCVO have to offer; and/or that they find it difficult to engage in dialogues which are pertinent to the voluntary sector but do not deal directly with the particular issues of relevance for the black and ethnic minority voluntary sector. This is an area of commonality with other Voluntary and Community Sector – Surrey’s Infrastructure Development Plan found 21% of Voluntary and Community Sector were involved to some extent in the provision of advice

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this report:

Travellers & Gypsies

Consultation with BME Communities for Surrey Supporting People Team, Surrey County Council, May 2005, carried out by PS Consultants

Surrey has a large population of Travellers and Gypsies (the fourth highest in the UK), approximately 10,000 in Surrey. Travellers and the Gypsy community are among those groups that often face the biggest problems of open, overt prejudice and discrimination, and yet this group is often not identified in ethnic monitoring. They are, as a consequence, one of the most overlooked BME groups.

The transient nature of the Traveller/Gypsy community, together with a lack of access to education, makes it difficult for services providers to keep individuals informed about services available and for travellers and gypsies to build a knowledge and understanding of the services available in a particular locality.

Surrey however, has a good level of provision and support for Travellers/Gypsies in the shape of dedicated sites, and officers within many of the boroughs and districts working with the Travelling communities.

The report to the Department of Health in 2004 Health Status of Gypsies and Travellers in England identifies the inequalities in health status between Gypsy Traveller and non-Gypsy Traveller populations.

Health problems among Gypsy/Travellers are between two and five times more common than in the settled community. Gypsy/Travellers are more likely to be anxious (the women are twice as likely to be anxious as the men), have breathing problems (including asthma and bronchitis) and chest pain. They are also more likely to suffer from miscarriages, still births, the death of young babies and older children.

There is also a traditional belief in self reliance or family support, suspicion of health services, and the belief that treatment will not be effective.

An exploratory study Making a Difference on the health needs of gypsies and travellers in Leeds in July 2001 found that the Traveller community is one of the most disadvantaged, yet most under resourced.

Travellers’ problems are complex and are often caused or exacerbated by their environmental living conditions. Many families live with a tremendous amount of anxiety – fear of eviction, finding a place to stop and the constant battle against discrimination and poor access to medical care in some parts of the country. They often live in conditions which lack the basic necessities e.g. clean running water, security and privacy etc.

The report’s recommendations include providing advice, information, advocacy and practical help, as well as establishing community groups, projects and initiatives to meet their needs, through community development work.

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this research highlights:

Older People - Benefits Take up

In December 2003 the Department for Work and Pensions produced a report Delivering Benefits & Services for Black & Minority Ethnic Older People (in PDF format)

The aim of this project was to explore the barriers to the take-up of benefits among black and minority ethnic older people. Barriers to claiming were found to include language, concerns about the impact of claiming on residency status and not having a National Insurance Number. There were also barriers associated with literacy problems, ignorance about the benefits system (and sometimes of the concept of benefits) and apprehension about contact with statutory service providers.

Five specific factors affect the levels of benefit claimed by BME elders:

The effectiveness of the services provided to support claims depends upon:

‘Older People generally reported having claimed with the help of a third party. However, the likelihood of older people making a claim was also affected by the resources of these third parties: their knowledge about benefits; their training; the time they had available to help older people; and their own attitude to claiming.’

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this report highlights:

Older People – Advice & Information

Age Concern Information and Advice Services for black and minority ethnic older people - A Strategy for London (in PDF format) October 2002

Information and advice (I&A) services have a key role to play in supporting older people to enforce their rights, to gain access to services and to influence the policies and practices that affect the quality of their lives. Services need to ensure:

The needs of frail elderly people or older people with support requirements were seen as the most serious of the issues for BME communities investigated by a Surrey survey in 2005. All except 3 of the 17 groups who responded thought this issue to be either very serious or quite serious – and it is often overlooked by providers as there is an assumption that many ethnic minority communities “look after their own”. This report clearly identifies this as a serious issue among Surrey BME communities.

‘Consultation with BME Communities for Surrey Supporting People Team, Surrey County Council’, May 2005, carried out by PS Consultants.

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this report highlights:

Disabled children & their families

A study by Chamba et al On the edge: Minority ethnic families caring for a severely disabled child (1999) looked at the needs of six hundred Black African/Caribbean, Indian, Pakistani and Bangladeshi parents caring for a severely disabled child in the UK. The findings were compared with a survey of the needs and experiences of white families with a severely disabled child, conducted by Bryony Beresford in 1995.

Twice as many (9 out of 10) BME families report that their child’s needs are not being met, compared with white families (Chamba et al 1999). This same study found that both groups of parents had the same seven most pressing needs, with more money and more help planning the child’s future at the top of the list.

Type of information and support needed

The extent of unmet need was far greater among minority ethnic groups compared with white families. Half the parents said their child had seven or more unmet needs (compared with four or more unmet needs among white parents in the 1995 survey).

Parents identified the following key areas for their children:

Parents identified the following key areas for themselves:

Parents also wanted more information about their child's disability.

Families from black and minority families are under-represented as users of short break services (Chadwick et al 2003).

The Family Fund Annual Activity Report 2003/04, Family Fund, York found a significantly lower rate of take-up of Disabled Living Allowance and other disability allowances amongst families from minority ethnic groups. The report suggests these families may be unaware of their eligibility or have difficulty completing forms.

Preferred style of information

On the edge: Minority ethnic families caring for a severely disabled child (1999) reported that the most preferred information sources were directly from a professional and written material. Telephone help lines (in English and other languages) were not popular.

Overall, a third of Asian parents said they needed an interpreter when talking to professionals. However, almost all families felt such support was inadequate in some way. Problems in professional interpreting included: lack of availability of interpreters; limited knowledge of the child's impairment; and concerns about confidentiality.

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this report highlights:

Carers

In summer 2006 Bath and North East Somerset Council undertook their Black and Minority Ethnic Carers Access Research Project.

The aim of the research project was to encourage BME carers to identify the barriers they experienced accessing assessments and services. The report made recommendations about how to improve access and advance service delivery.

The BME carers interviewed identified barriers that they had experienced and overcome in order to receive support. Written English was acknowledged as a difficulty for many BME carers. Reading documents and form filling was often identified as a problem. However, most had a good command of spoken English. Some BME carers wanted to improve their understanding of written English. They acknowledged that support would be required to achieve this aim. Many BME carers did not appear to be aware that they could ask for documents in other formats. They identified the need for more information to be available in their first language. Some BME carers recognized that pride prevented people accessing services.

Many carers did not know that help was available to support them and thought they wouldn’t be entitled to it. Previous bad experiences, especially of racism prevented people asking for help.

Many of the needs, difficulties and wishes of BME Carers reflect the views of all carers. Carers from all backgrounds experience difficulties in accessing a break and often lacked knowledge of services and support available locally.

The significant difference between BME carers and white British carers was the experience of racism. These experiences exacerbate the problems faced by carers. All carers can experience problems understanding the systems of Community Care, but for BME carers this can be exacerbated by language difficulties. The BME carers interviewed indicated that understanding written English can be difficult. They also reported that misunderstandings can occur because of misinterpretation of dialect and language.

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this report highlights:

Deaf People

Deaf people from minority ethnic groups: initiatives and services

Deafness and ethnicity: Services, policy and politics by Waqar Ahmad, Aliya Darr, Lesley Jones and Gohar Nisar; Joseph Rowntree Foundation 1998.

The majority of initiatives focused on Asian and Afro-Caribbean deaf people and/or their families, and were based in large cities. Provision was poor for other minority ethnic groups. There was little provision for older deaf people, deaf-blind people, deafened and hard-of-hearing people.

The lack of information about deafness, deaf culture and services among users meant that workers often had to provide this information. This task was often beyond their remit. Workers in the voluntary sector were particularly poorly supported and dealt with demands for which they had neither training nor resources.

Unlike other BME groups, Deaf people and their families often lacked a common language in which to communicate within their own families. Communication often took place through one or two family members.

Many deaf people felt marginalised from their own religions and cultures. Schools were seen not to be sufficiently concerned about children having a positive ethnic identity. Whilst valuing a positive deaf identity, for many parents deaf culture was simply an extension of the white culture, and had a strong fear of deaf children losing their cultural and religious identity. Many deaf young people resented not knowing enough about their cultures and religions for easy participation in family and community life. Equally they felt marginalised in the deaf culture which did not respect their ethnic identity.

Many deaf people had a strong deaf identity. However, they accused white deaf people of racism. Deaf clubs were regarded as not welcoming. Few minority ethnic deaf people held senior positions in deaf organisations.

A number of British Sign Language (BSL) and sign-supported English classes for parents were identified. Users were largely Asian women. Few Asian fathers or parents of other ethnic groups attended. Such groups helped develop valued communication skills. They were also an important source of information on deaf culture, services, and procedures such as cochlear implants, access to benefits, other advice and social support. Successful signing classes provided transport. Unlike in much BSL teaching, most classes were taught by hearing tutors, sometimes assisted by people skilled in Asian languages.

Access was hampered because of limited provision of BSL and community language interpreters. The community language interpreters, when available, were not always knowledgeable about deafness and services; some users found them insensitive. Sign language interpreters were often not aware of certain cultural practices. Information about deaf culture, services and procedures, and support to parents was difficult to obtain, especially for those who did not use English.

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this report highlights:

People with a visual impairment

Improving the Access of Ethnic Minority Visually Impaired People to Appropriate Services (Thomas Pocklington Research)

Research found that Visual Impairment (VI) issues have been sidelined from the BME agenda and BME issues and are largely ignored by Visual impairment service providers and organisations.

Reviewing the literature on VI in BME communities showed that there were high levels of diabetes that led to an expectation of worse eye heath. Also, that there were raised levels of glaucoma in African Caribbean populations and that cataracts are more common amongst people of South Asian origin.

There is under use of services by ethnic minority groups, possible under-registration and certainly a problem with low levels of knowledge among BME communities.

People of BME groups were generally found to have low expectations, seeing sight loss as an inevitable part of the ageing process. There was also a sense of stigma or false pride among ethnic minority groups and a sort of learned helplessness. Any response at improving access to services must be community specific.

The research also found that information must be translated into minority languages and needs to be actively promoted through community organisations. CD ROMS are helpful for providing a talking version of leaflets, but a checklist of issues to raise with individuals, within communities and organisations, and a toolkit checklist for service providers would elicit more meaningful responses.

Examples of good practice have been seen in Henshaws, RNIB, Seeability and Birmingham Focus, but often not written up and documented for others to use.

Spreading the Word – Henshaw’s Society for Blind People research project.

This was a three year project looking at the information needs of visually impaired families. The project focused on families within four marginalised groups including families with a visually impaired child or teenager from a BME background. In phase one the research objectives were to identify & explore the barriers faced by BME families when accessing services; identify the main information gatherer within the BME families; and to explore and evaluate the recommendations made by BME families. included in the findings were recommendations to provide appropriate information services; to provide a translation of the information provided and to promote and raise awareness of Henshaws

The report’s main findings highlighted that there was little knowledge of the service providers available; English speaking groups had a higher awareness of VI groups than those that spoke Urdu or Punjabi as their first language; there was a stigma about disability among the Urdu & Punjabi groups; parents were not proactive in gathering information, but expected information to be sent to them automatically. Others felt ‘ashamed’ of their inability to communicate in English.

Many VI organisations were found not to be culturally sensitive and are aimed at white British communities; the mother was the primary carer and the father the information gatherer because he could communicate in English and had stronger societal links; face to face information provision is favoured through parent support groups who share the same cultural and religious beliefs; links with Asian communities are made through community and religious leaders.

Translated information should use simple, direct language. Pictures in written material were viewed positively by the English speaking group, but viewed as culturally insensitive by Urdu and Punjabi speaking people; effective information points – markets, mosques and community shops selling cloth; and the most common topics requested at forums held in the mother tongue of the attendees were education, disability and benefits.

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this report highlights:

People with a learning disability

Improving services for people with learning disabilities (in PDF format) , compiled by Chris Hatton, professor of psychology (or Health Research at Lancaster University (2005).

This report found that many services focus too heavily on addressing individual needs without attempting to recognise the interdependent, collective culture of family life in South Asian communities.

Advocacy services which rely on self-referral can also end up excluding people who would be more effectively engaged through outreach work.

Children with a learning disability from black and minority ethnic communities (BME) Chance for Change (2005) Mencap submission.

The prevalence of learning disability in South Asians aged 5-32 is three times higher than in other communities (Azmi et al 1996). This higher rate of learning disability in South Asian populations is linked to high levels of material and social deprivation which may combine with other factors such as poor access to maternal health care and higher rates of environmental or genetic risk factors (DH 2001).

There is a need to ensure that information about local services and welfare benefits is developed and delivered to meet the needs of South Asian families with a child with a learning disability. The key recommendations were that all families with a child with a learning disability under the age of 3 years is offered a Portage service; that regional BME/disability advisers support local agencies in developing culturally sensitive services and information; and the introduction of a minimum entitlement of one break a week for every family with a child on higher rate DLA and a comparable break for other families.

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this report highlights:

Carers of people with learning disabilities

Reaching Out: Working with Black and Ethnic Minority Groups – Birmingham MENCAP (2006).

Among the key findings of this research is evidence to show just how little carers from BME communities know about the services they could be using. They lack basic knowledge about the services that are available, and they have no understanding of how those services operate and consequently what their rights are. But worst of all, they often have no idea what learning disability is, how it affects the person they care for and what they can do to help.

Carers told researchers that the lack of accessible information was the greatest problem they faced in caring for their loved ones. They wanted more information about the particular conditions that they are dealing with, and about the financial support available and how they can get it. Older carers need information about what is available for the person they care for, including daytime activities like employment, volunteering or leisure pursuits.

Although this information is sometimes available, it is often not in a format or language that carers can understand. The told researchers that agencies use a lot of jargon and complex medical terms that they do not understand. And very few services make information available in community languages. Even when translated written material is available, it is often hard to understand – terms like ‘learning disability’ do not have equivalents in some languages.

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this report highlights:

Autism

The National Autistic Association produced a report Missing out? Autism, education and ethnicity: the reality for families today (in PDF format) in 2007. It found that children with autism from black and minority ethnic (BME) communities face a double discrimination which makes their educational experience consistently worse than that of their white British peers.

The NAS report recommends that:

The scoping paper Autism and the Ethnic Minorities (2002) by Ivan Corea highlighted the need for culturally appropriate services to meet the growing needs of ethnic minority communities across the UK. This includes: ethnic minority advocacy services, dissemination of information on autism and Aspergers syndrome in the major ethnic minority languages, and bi-lingual workers and Special Educational Needs teachers from BME communities.

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this report highlights:

People with mental health difficulties

There is a body of evidence to show that people from BME groups are disadvantaged in gaining access and treatment for mental health issues. Research by Rethink for their factsheet – Black and Minority Ethnic communities and mental health and the Race Equality Impact Assessment by the Mental Health Alliance to changes to mental health legislation,highlight some of the main issues:

BME groups face additional problems compared to their white counterparts, when seeking support and treatment for a mental health condition. People from BME groups are more likely to be diagnosed with severe mental health problems and admitted to hospital.

Black service users and carers found it difficult to find help in the early stages of illness, resulting in the individual’s condition deteriorating to the point where compulsory treatment was the only option. Overall, people from BME groups were over represented as compulsory patients. There are numerous reasons for this which do not necessarily relate to the mental health legislation itself.

Cultural beliefs may put people off getting support and treatment, leading to the individual’s condition deteriorating further until a crisis situation occurs and compulsory treatment is necessary. The issues that affect people from BME groups are not be common to all and this can result in inadequate support and treatment.

Families from BME groups may be larger and cope with mental health issues within the family. The lack of adequate support and the pressures of doing this can affect the mental health of children within the family. Mental illness has a stigma attached to it and may be dealt with privately by the family.

Some BME groups view mental illness in a more holistic way, as a mental and spiritual experience. The Western approach to mental illness is based on the medical model where drug treatment is offered. Some BME groups may be deterred from seeking support and treatment because the holistic approach is not offered by services, or they may find that their mental health problems are not recognised when they do seek help.

Mental illness may not be seen as a priority by some BME groups and therefore help is not sought.

Most medical consultations are in English which may not be the preferred language of the person seeking help and this can lead to misdiagnosis.

Some BME groups are over represented in hospital, but despite this very few people are offered non drug treatments like cognitive behavioural therapy or art therapy. Racial stereotyping can result in more people from BME groups being considered a risk to the public and therefore detained under the relevant legislation.

Research suggests that young Asian women are particularly prone to suicide and those from Pakistan and India have the highest incidence depression. First generation parents may not recognise the Western approach to the treatment of mental illness and therefore have unmet need.

African Caribbean people are more likely to be diagnosed with psychosis and admitted to hospital than any other group. This may be because this group are hesitant to seek medical help fearing misdiagnosis or institutional racism and therefore only receive treatment when a critical situation arises.

Mental illness among Chinese people is relatively low. This could be because of strong family support networks or because of the stigma attached to mental illness means outside help is not sought.

Ethnic minority groups do also include white people from outside the UK – Irish communities have been shown to have higher incidences of depression and alcohol problems and are more vulnerable to suicide.

In Surrey mental health related problems are seen as a very serious problem among the Bengali and Islamic communities of Epsom and Ewell, and the Pakistani community in Woking – as well as among Kosovan/Albanian refugees. Consultation with BME Communities for Surrey Supporting People Team, Surrey County Council, May 2005, carried out by PS Consultants.

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this report highlights:

Refugee & asylum-seekers

In 2003 Joseph Rowntree Foundation looked at the particular needs of Disabled people in refugee and asylum-seeking communities in Britain.

The research found that a lack of co-ordinated information and service provision, and gaps in professional knowledge on disability-related entitlements increased the difficulties experienced by disabled people in refugee and asylum-seeking communities.

Most service providers were unfamiliar with the full range of entitlements of disabled people within refugee and asylum-seeking communities, and had very little knowledge of community care assessments. This hindered their ability to act as effective advocates and signposts for disabled clients.

Unmet personal care and domestic assistance needs (e.g. washing, dressing, making meals) were common and few people were aware that social services might be able to assist with such tasks. These needs were often exacerbated by problems with inadequate housing and a lack of aids and adaptations. Several interviewees (including two disabled women raising young children on their own) reported great anxiety about the lack of practical assistance available for essential parenting roles. A lack of knowledge about entitlements and of how to negotiate social services and benefits systems led to individuals missing out on benefits and services, sometimes for decades. One commented that his life in exile provided sanctuary from persecution, yet felt like a prison sentence due to the isolation he experienced as a disabled person.

The report recommends that there needs to be disability equality training for those working with refugee and asylum-seeking communities and training to increase professionals' knowledge about entitlements for disabled people in refugee and asylum-seeking communities.

With both Gatwick and Heathrow on the borders of Surrey, we are in a good position to impart information at the point of entry to the UK.

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this report highlights:

Health issues for BME communities

Ethnicity and Health (in PDF format) Office of Science and Technology PostNote (January 2007 Number 276)

This research found that Black and minority ethnic (BME) groups generally have worse health than the overall population, although some BME groups fare much worse than others, and patterns vary from one health condition to the next. Evidence suggests that the poorer socio-economic position of BME groups is the main factor driving ethnic health inequalities.

Some BME groups experience worse health than others. For example, surveys commonly show that Pakistani, Bangladeshi and Black Caribbean people report the poorest health, with Indian, East African Asian and Black African people reporting the same health as White British, and Chinese people reporting better health.

Patterns of ethnic inequalities in health vary from one health condition to the next. For example, BME groups tend to have higher rates of cardio-vascular disease than White British people, but lower rates of many cancers.

For SID, working to meet the information needs of disabled people from BME communities in Surrey, this report highlights:

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