“Making disability information accessible to individuals from Black & Minority Ethnic groups”
June 2009
A one year project funded by the EHRC (Equality & Human Rights Commission).
Focus Group 1 - People with a Visual Impairment
Visual Impairment (VI) issues have long been sidelined from the BME agenda and where there are pockets of activity within the voluntary sector, these tend to be “bolt on” projects rather than long term strategies or core services. Reviewing the literature on VI in BME communities shows that whilst there are higher incidences of well known conditions such as diabetes, cataracts and glaucoma, there is under-use of services by ethnic groups. This may be partly due to the low expectations of this group and the view that sight loss is an inevitable part of the ageing process.
People from ethnic minorities are recognised as least likely to seek help when suffering with sight problems yet they are some of the most vulnerable to sight loss. People of African-Caribbean descent are for example eight times more likely to develop glaucoma than the general population and it tends to occur ten to fifteen years earlier than in other ethnic groups (Thomas Pocklington Trust 2009).
Outcomes from this project:
- increase awareness amongst primary information providers of the disability support available and review BME registration on Surrey’s sight register
- establish links between local BME groups and VI service providers
- gather information on local/national initiatives and good practice to support future development
1. Primary Information Providers and Surrey’s Sight Register
Surrey Association for Visual Impairment
Surrey’s Sight Register is managed by the Surrey Association for Visual Impairment (SAVI) which is the major provider of services for visually impaired people, including those with combined sight and hearing loss in Surrey.
SAVI maintains a confidential register of people who are blind or partially sighted, on behalf of Surrey County Council. Keeping this register is a legal requirement and enables SAVI and local authorities to meet the needs of people with a visual impairment and shape their services for delivery accordingly. Registration is also essential for claiming certain financial benefits and concessions and for getting help from some local voluntary groups.
The amount of ethnic data collected on the register is comprehensive without being onerous and therefore makes bespoke extraction reports relatively straight forward. The number of visually impaired people and their ethnicity is also collected by borough and district. This greatly improves the potential for planning effective service provision and targeted campaigns.
These charts compare the resident population estimates by ethnic group across all ages by the Office for National Statistics for Surrey in 2005 and SAVI’s statistic.
As anticipated and for the reasons stated earlier, there is a not insignificant gap between the percentage of people with an ethnic status in Surrey 7.38% and those shown as registered with SAVI 8.1%. Outreach services play a major part in promoting services to the BME population and whilst SAVI do not currently have a dedicated BME Development Coordinator, as part of their current business plan they aim to promote social inclusion across all ethnic backgrounds and provide the fullest service that they can.
The analysis of their register highlights this discrepancy and also highlights the localities where their community reach shows limitations. A campaign of awareness raising, not just by the organisation but also by the many Surrey based support clubs they communicate with should assist in gaining the trust of BME communities as a whole, with the result that there will be an increase the number of people coming forward to register and seek support.
2. Links between local BME and VI groups
Action for Blind People
Action for Blind People (Action) is a national charity and the team for the southern counties is based in Epsom, Surrey. They are one of the largest charities in the UK providing free and confidential support for blind and partially sighted people in all aspects of their lives - housing, employment, technology and rights being the main areas. The emphasis of their strategy is on people, their empowerment, support and growth.
We met with Sue Millar, the new Head of Action’s Southern Counties early on in this project. Part of Sue’s time and that of her team is spent concentrating on analysing the services they can provide to gypsy and traveller (G & T) groups in Surrey (see Focus Group 4) as they are a large group with complex needs. Sue had just started networking with two gypsy and traveller Development Workers at Surrey Community Action (SCA) when we met and so at the end of our first meeting it was agreed that we would all work together to support a visual impairment initiative. It was also seen as advantageous to learn more about each organisations service and the many different types of VI.
Our first joint meeting established each organisations objective in supporting the Surrey G & T population.
Action’s UK vision strategy is to provide access to sight testing across the UK for a number of BME groups as their VI and sensory needs are often overlooked by statutory services. Their local South East initiative is to reach Surrey G & T sites using one of their three mobile units. The mobile units take out information and advice teams to a variety of sites but taking them to G & T sites will be a "first". Action has access to a low vision specialist who they agreed to contact to seek a referral for a local eye specialist. It was hoped that this specialist would be willing to go out with the mobile team once approval for the mobile unit was granted.
SCA explained that for the vast majority of gypsies and travellers, a sight test is not a priority due to their peripatetic lifestyle, housing problems and employment issues taking precedent) so many had never had one. Any health issue has to be bad enough to impact on income earning capacity or be particularly serious before they seek help. Pride is another major barrier. The gypsies that they had spoken to about the possibility of mobile visits had been very enthusiastic.
SID explained the parameters of our project and the benefits of combining the visually impaired with gypsies and travellers. Our objective was to train SCAs Development Workers on SID’s information materials and database so that they could be a first point of contact and refer disability issues to us. We would also look to include other G & T support workers from local borough councils in a training session (see Focus Group 4 - Gypsies and Travellers).
At our second meeting two sites had been selected for the mobile to visit but an optometrist had yet to be found. Action confirmed that where the sight tests proved positive, they would take over individual support and maintain contact, particularly where emotional support may be needed following treatment. It was noted that timings of the mobile visits needed to accommodate male workers returning home later in the afternoons and that the individual site managers from the borough councils would be invited to attend.
At the time of writing, Action had applied for funding from The Big Lottery under their “Reaching Communities” category as a voluntary optometrist had not been found for the required two days.
The second BME group Action is focussing on is the Korean community in New Malden which see disability as a form of failure. The approach to them is via a “supporting business initiative” route as there is an aversion to working with or taking support from women. They have learnt that their presence at meetings initially has to be a passive/silent one until they are recognised as a familiar face and can then start to interact more positively.
Action has some recent examples of working with specific BME groups in concentrated areas across the UK e.g. Asians in Birmingham and Bengalis in Tower Hamlets. Sue’s advice for working with BME people is to take into account both environmental and cultural barriers to accessing individuals and groups and to focus on one type of ethnicity and visual impairment.
From April 2009 Action for Blind People will become an associate charity of RNIB in an innovative new partnership. They will be joining forces to share resources, skills and expertise to engage and reach more blind and partially sighted people with the aim of providing even better services.
3. Local & National initiatives and examples of Good Practice to support future development
Henshaws
Henshaws offer a wide range of services in response to the needs of visually impaired people across the North of England. Their services are tailored to meet local people’s needs, so they sometimes vary by region. They also offer a range of educational, residential, day care and community services.
Their South Asian Family Link worker, Zahida, has been in post for 2 years and is South Asian herself which she finds invaluable in creating a relationship of trust and promoting two-way communication. Her role is to make information and support on visual impairment issues more accessible and to break down the many barriers that exist in seeking support. She does home visits and works with the whole family. Her referrals come from professionals, women’s groups, VI teachers and hospitals. There can be a culture of self blame stemming sometimes from religious beliefs and Zahida spends considerable time helping families to understand that a disability is not their fault and that they are not losing self esteem or pride by asking for help. She talks to families about how receiving support can help maintain a happy and balanced life. If families provide too much help the individual with the impairment may not learn the skills they need and this in turn can prevent them from leading an independent life. Keeping support within the family unit can also stem from the religious belief that “if I help this person I will gain future rewards”.
Now in her second year of outreach work, clients are calling her as she has gained their trust. One of the biggest barriers is where services do not recognise or respect cultural values especially relating to something as simple as food choice or holding events where food and drink are served during Ramadan. She has become an important point of reference for her colleagues and other local groups.
A recent activity that worked well in bringing communities together was a culture and diversity day where the emphasis was having fun as a family and sharing religious backgrounds, food and activities.
Zahida also contributes articles to Asian newsletters and papers and her work with families was recently featured on local television.
Henshaws BME community workers meet every 6-8 weeks in Manchester, ensuring that local issues are discussed and awareness raised.
To achieve an improvement in service uptake by people from BME communities, outreach, cultural awareness and a good working relationship with minority ethnic community groups is essential. Recent findings from research commissioned by Henshaws, recommend the following:
- sight loss services need to recruit staff from ethnic minorities and/or ensure that workers are trained in the appreciating the cultures of the clients they work alongside
- Information must be translated into minority languages and actively promoted through and with the support of local community organisations
- sustained effort may be needed to overcome suspicion based on past experiences or lack of previous knowledge
- “bolt on” short term projects have their successes but a sustained approach that is a core part of strategy will bring about change and create better relationships
RNIB - Royal National Institute of Blind People
One of the RNIB’s five main goals for their new five year strategy announced in 2009 is to reduce the rates of avoidable sight loss for people who are most at risk. People of Caribbean, African and South Asian origin, and those on low incomes are at greater risk of losing their sight. By 2014 they want more people from African, African-Caribbean, South Asian and low income communities to go for regular eye tests, to get referred to eye clinics and so reduce avoidable sight loss. They will also work with their partners in government and eye health decision-makers to introduce eye health targets.
As part of the five year strategy, they have appointed six new project development staff to work on a variety of issues with ethnic minority groups across the UK.
The first is based in Glasgow where the ethnic minority population is three times the national average, a figure likely to have increased with the number of asylum seekers now resident there. Gozie Joe Adigwe is tasked with the objective of analysing eye health within the ethnic population of Scotland, focussing on South Asian, Chinese and Afro-Caribbean which is a significant first. They hope to determine prevalence of certain eye conditions. Diabetic retinopathy is for instance more common in individuals of Pakistani, Indian or Bangladeshi descent who make up a sizeable minority in Glasgow. In the UK the main method of eye disease detection is by high street opticians but many people from ethnic backgrounds, particularly refugees or first generation individuals may not appreciate this and only seek help from a GP when sight deterioration has already started.
Gozie’s colleague Manjit works in south London campaigning with Primary Care Trust’s and health trainers linking with their “20-20 Vision” strategy to raise the awareness of eye health. His first task is to develop working relationships with the BME forum in Ealing that represents 150 long established ethnic community groups. He will contribute to their newsletters and attend meetings and AGMs. No new materials have been designed yet to promote his work, but he hoping to set up focus groups within the forum so that they have community ownership of VI issues amongst others. His view is that communities must have a say in new initiatives and each nationality needs a slightly different and personalised approach however small e.g. using the Bangladeshi flag when talking or writing to Bangladeshis.
Organisation of Blind African Caribbeans (OBAC)
OBAC is based near The Oval in London and exists to ensure blind and partially sighted African and Caribbean people have access to relevant services which enable them to overcome the barriers that prevent them from becoming active members of the community. They run free training provision for disabled people on key skills, numeracy and literacy and provide career advice, guidance and job search. Counselling and transcription underpin all of their services.
One of the ways they promote their service is printing leaflets and posters using simple red text on a white background which they say works well for their clients (see PDFs Online). These are displayed in hospitals, job centres and community centres and they receive most of their referrals from Social Workers. They also support deaf Africans and Caribbeans and employ staff from different ethnic backgrounds.
Other examples of good practice where vision services are taken to the people:
- Birmingham Focus on Blindness promotes sight loss information fairs held in community venues. Their Community Champions are local people who are trained to talk about sight loss and gather community feedback
- Living Options Devon organise regular "Outreach Forums" where up to 20 people at a time can discuss their problems
- SeeAbility, Tower Hamlets provide drop in sessions, telephone support and regular direct contact including visit to religious and education centres
- Derbyshire Association for The Blind hold low vision assessments in community centres where low vision aids can be demonstrated and tried out. Trained “Champion” volunteers from local BME communities deliver talks and support within their communities
- Bradford Local Authority Sensory Needs Service provide workshops, demonstrations of equipment and one-to-one assessments
- Royal Hallamshire Hospital, Bradford - people from BME communities are invited to chose their own reading material for sight tests. This means they can bring something in their own language and provides a more accurate assessment of their sight
Summary
1. People from BME backgrounds are currently under-represented on the Surrey register of VI people, despite the increased likelihood of VI in this population. This reflects the national picture but is a situation SAVI, the registers administrator, is seeking to address.
2. The experience of working in partnership with a specialist voluntary organisation who have considerable knowledge of working within BME communities such as Action for Blind People in Surrey, has highlighted the need to focus on one type of ethnicity and one part of the visual impairment spectrum i.e. eye tests, thus increasing the potential to make an impact and build on the experience for future initiatives.
When choosing an ethnic group to support, outreach workers need to develop their role in partnership with the relevant community centres and groups, seeking their advice on approach and cultural sensitivities. They can then offer talks and drop in sessions promoted by the centre managers so that individuals can explore their services from a venue they are familiar with. This way their culture is recognised and respected and hopefully, trust in the service provider will be gained.
3. The National charities we contacted have all embraced outreach work as a fundamental method of supporting BME communities and built this into their core service strategies. Those communities must however be consulted so that organisations take in to consideration the beliefs and traditions of the different communities they want to reach. Delivery of information must also be designed with their input and be made accessible to individuals from those target communities. Emphasis should be given to the improvement and/or enhancement that uptake of services can make to people’s quality of life. Wherever possible key words from the various community languages need to be incorporated or at least acknowledged.
Without change, eye conditions within BME communities will continue to go undetected and treatment and support is too little too late.
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