Deafblind Guidance: Eight Years On Sense Local Authority Survey Report – Text Only Version Adult Services 2009-2010 Throughout this document, a text description of key information from figures is given. 1. Introduction 1a. Background Last year the Department of Health reissued Social Care for Deafblind adults and Children (LAC 2009)6. This was done to emphasize that all English local authorities must provide deafblind children and adults with effective services. Similar guidance has been issued by the National Assembly for Wales. This report outlines the results of the 2009-2010 Sense local authority survey of services for deafblind adults, which was carried out between November 2009 and April 2010. The survey investigates the extent to which the guidance is being implemented in England and Wales, helping Sense to gauge whether the needs of deafblind people are being met. This report deals with a survey of local authority services for deafblind adults. A separate survey has been carried out on services for deafblind children. The report on services for deafblind children will also be published in autumn 2010. 1b. Response Rate This year 53 authorities responded to the survey. This represents 30% of all local authorities in England and Wales. 12 of these authorities have replied every year in which we have conducted the survey since 2003. These form the basis of our year on year comparisons. The accuracy of the data in this report is dependent on the knowledge of the people who completed the survey forms. The forms are filled in by local authority staff. 1c. Report Summary This report shows that the deafblind guidance is still being inconsistently implemented. The number of deafblind adults identified remains far lower than Sense estimates it should be. Under half of those identified are being given a specialist assessment. However there are more encouraging developments in service provision. The number of people receiving one to one support shows a significant increase. Local authorities are also providing deafblind adults with a range of other services. 1c. Key Findings Local authorities have identified just over 10% of the deafblind adults Sense estimate they should have done. Under half of identified deafblind adults have been given a specialist assessment. There has been a very encouraging increase of 24% in the number of deafblind adults receiving one to one support. c2. Identification In 2001 central government estimated that local authorities should be identifying 40 deafblind people per 100,000 of the general population. However academic research recently commissioned by Sense (Emerson, E 2010) suggests that the real proportion of deafblind people is far higher. Sense now estimates that 572 out of every 100,000 people are deafblind. This survey uses these latest figures as the measure against which local authority identification of deafblind people should be judged. Sense recognises that it is often difficult for local authorities to identify all the deafblind people in their area. Often older people, who make up the vast majority of deafblind adults, do not contact social services or make appointments with audiology or opthalmology departments despite evidence of possible sensory impairments. It is also true that many GPs dismiss sight and hearing problems among older people as a natural part of the ageing process. Given this it is perhaps not surprising that no local authority came close to identifying 572 deafblind people per 100,000 of the general population in 2009. The authority with the highest identification rate managed to identify 294 people per 100,000. This is 51% of the number of deafblind people Sense estimates would live in that local authority area. Only 11% of authorities had identified over a quarter of the number of people Sense estimates live in their catchment area. The average number of deafblind people identified in 2009 was 71 per local authority, only 12% of the number Sense estimates live in each local authority area. Some authorities have made strenuous efforts to identify deafblind adults and they should be congratulated for doing so. Monmouthshire County Council went from identifying 46 deafblind adults per 100,000 of the general population in 2007 to identifying 116 in 2009, a 152% increase. Sheffield City Council increased their identification rate from 78 to 115 per 100,000 of the general population, demonstrating that even when authorities have already identified a relatively large number of deafblind people, a focus on identification can still lead to an increase in the numbers of deafblind people known to that local authority. Good Practice Example: Monmouthshire County Council The case of Monmouthshire’s increase in identification is illustrative of the types of approach which might assist other local authorities to increase the number of deafblind adults they have identified. Monmouthshire cross-referenced their various sensory impairment registers to ensure that they had identified all those with a dual sensory loss. The sensory support service then met other teams within Monmouthshire County Council Social services such as the learning disability team and the older people’s team to ask them to refer on any clients who might have a sensory impairment. They organised training events for external service providers such as care homes and domiciliary care agencies to make them aware of the signs that a client might have a dual sensory impairment. They have also audited individual care homes to identify clients who might have a dual sensory impairment. This proactive and comprehensive approach to identification has paid dividends. The example of Monmouthshire also demonstrates why some local authorities need to take a far more robust approach in proactively identifying deafblind adults. The fact that 5 out of the 53 respondents still had not identified a single deafblind adult more than eight years after the guidance was originally issued is a disgrace. Those authorities should strive to remedy this chronic under identification and to provide the deafblind people in their area with the services that they need. The number of deafblind people identified in comparable authorities has levelled off. It is perhaps understandable that the rate of identification has not increased. It is possible that many local authorities have now identified those who have had a dual sensory impairment for several years or those who have proactively asked social services departments for assistance. The challenge now is to identify the hidden deafblind population of older people who do not act on their dual sensory impairment and who will not actively engage with social services departments. Number of deafblind adults Identified per 100,000 of the general population in comparable authorities 2003-2009 In 2003, 34 deafblind adults per 100,000 of the general population had been identified. In 2004, 48 deafblind adults per 100,000 of the general population had been identified. In 2005, 55 deafblind adults per 100,000 of the general population had been identified. In 2006, 62 deafblind adults per 100,000 of the general population had been identified. In 2007, 77 deafblind adults per 100,000 of the general population had been identified. In 2009, 76 deafblind adults per 100,000 of the general population had been identified. 3. Assessment Following the identification of a deafblind person, local authorities should assess that person’s needs in order to offer them appropriate services to enable them to lead as independent a life as possible. The assessment must be carried out by a suitably qualified individual with theoretical and practical knowledge of deafblindness. This ensures that they are aware of the specific issues which a dual sensory impairment brings and the support available to tackle those issues. Providing the assessment is a legal requirement, but there is a widespread failure among authorities to provide specialist assessments. By 2009 in the 53 responding authorities 10,040 deafblind adults had been identified but only 4,203 (42%) had been given a specialist assessment. The whole point of identifying deafblind people is to ensure that they are receiving appropriate services to enable their independence. This process cannot happen without the provision of appropriate assessments. Number of deafblind adults assessed in comparable authorities 2006-2009 In 2006, 2,465 deafblind adults were assessed in comparable authorities. In 2007, 2,420 deafblind adults were assessed in comparable authorities. In 2009, 1,824 deafblind adults were assessed in comparable authorities. Sense understands that it might not sometimes be possible for local authorities to quickly assess a large number of recently identified deafblind adults. It is always likely that the number of deafblind adults assessed will lag somewhat behind the number identified. It should be noted however that the total number of people who have been given an assessment is actually declining, from 2420 in 2007 to 1824 in 2009. This is a worrying and unacceptable development, and demonstrates that local authorities might not be investing adequate resources to ensure that all deafblind people are given a specialist assessment. We would remind local authorities how important it is that they assess everybody identified as deafblind as quickly as possible, and provide them with the services recommended in that assessment. Even if a deafblind person would not be entitled to local authority services they are still entitled to receive a specialist assessment of need. 4. One to One Support and Other Services The guidance clearly states that all local authorities have a duty to provide deafblind people with one to one support and any other kind of service which they are assessed as needing. In 2009, 529 deafblind adults were receiving one to one support in the 53 responding authorities. This means that 13% of those given an assessment were then provided with one to one support. There has been a significant increase in the provision of one to one support. Among authorities who completed the survey in both years, 355 deafblind adults were receiving one to one support in 2007. By 2009 466 adults were receiving one to one support, a 24% increase. Some authorities were able to demonstrate an even greater increase. In 2007 Thameside Metropolitan Borough Council were providing 11 deafblind adults with one to one support. By 2009 they were providing 35 people with this support. Thameside were able to achieve this increase by employing two rather than one communicator guides. They promoted the service to clients with a dual sensory impairment who attended social groups for disabled and older people, and asked those clients if they knew anyone else who might benefit from one to one support. Communicator guide provision remains the most common form of one to one support. A communicator guide is used by a person with acquired deafblindness who needs assistance getting around and when communicating with other people. Specialist accredited training has been developed for communicator guides. Providing Communicator Guide Services The number of deafblind people receiving communicator guide support shows an encouraging increase. Adults Receiving a Communicator Guide Service 2003-2009. In 2004, 68 deafblind adults were being provided with a communicator guide. In 2005, 108 deafblind adults were being provided with a communicator guide. In 2006, 131 deafblind adults were being provided with a communicator guide. In 2007, 155 deafblind adults were being provided with a communicator guide. In 2009, 210 deafblind adults were being provided with a communicator guide. As these figures demonstrate there has been an encouraging increase in the provision of communicator guide support in comparable authorities. Among the 41 authorities who replied to both the 2007 and 2009 surveys, the number of people receiving a communicator guide service has increased from 252 to 332, a very encouraging increase of 31%. There have been some particularly notable increases in communicator guide provision. Salford City Council was providing 3 deafblind people with communicator guide support in 2007. By 2009 it was providing 15 adults with this assistance. Wiltshire County Council went from providing 10 deafblind adults with communicator guide support to providing 25 with this service. Sense welcomes these increases in provision and would argue that it demonstrates that there might still be an unmet need for communicator guide services in other authorities. The average number of hours of communicator guide support deafblind adults receive in comparable authorities has also risen very slightly, from 5.6 in 2007 to 5.7 in 2009. The increasing use of communicator guides will enable deafblind people to participate more fully in society. Other Types of Service The 2009-2010 survey form included space to allow local authorities to add information about services which they provided which could not be categorised as communicator guide or intervenor support, or to give further details about all services which they provide. The analysis in this section is derived from the information which local authorities provided in this part of the form. It is worth noting that less than a third (30%) of responding authorities filled in the section asking for further details on services provided. It is therefore possible that the analysis of other services might not include all aspects of the support which local authorities are actually providing to deafblind adults. Several local authorities employ visual impairment rehabilitation officers who train deafblind people in safe mobility techniques and daily living skills. The rehabilitation officers also ensure that those with a significant visual impairment are given suitable equipment such as long canes, liquid level indicators and tactile markers to indicate different settings on electrical and household appliances. Hearing impairment specialists can provide deafblind people with assistive technology, such as infrared loops to help them hear their television and flashing doorbells. As well as trained professionals local authorities are using volunteers to help deafblind people. A few local authorities have set up befriending schemes through which volunteers learn communication methods used by deafblind people and then befriend a deafblind person in their home. Local authorities also organise social clubs for deafblind adults and visits to various sites of interest. Local authorities have successfully developed links with external organisations such as Sense, the RNID and various organisations which assist visually impaired people. Local authorities have used these links to provide assessments, one to one support and equipment. Conclusion It is disappointing that identification rates remain so far below Sense estimates of the number of deafblind adults living in each local authority area. Sense understands that it is often difficult for local authorities to identify older deafblind people who might not engage regularly with their services. However we would argue that the increases in identification achieved by local authorities who had already identified some deafblind adults shows that there is a far higher number of older deafblind adults than are currently known to many local authorities. It is understandable that the assessment rate is lagging behind identification, but we would urge local authorities to remedy this in the coming year. Local authorities are providing a range of support services to deafblind adults. Sense urges local authorities not to discontinue or restrict access to these services as a response to the current financial recession. Cutting services could lead to higher support costs in the longer term. There is evidence that without specialist support deafblind people experience higher rates of physical and metnal health problems. By continuing to provide support services local authorities will reduce the risk of increasing future need. References Robertson, J. and Emerson, E. 2010. Estimating the number of people with co-occurring vision and hearing impairments in the UK. Lancaster University UK: Centre for Disability Research Appendix A: Services being provided by at least one Local Authority to deafblind Adults The following list of services reflects the details supplied by local authorities in returned survey forms about the range of services they are providing to deafblind adults. The information is taken from all comment boxes within the survey forms. All services mentioned in responses have been included, including those involving collaborative working between social services and other local authority departments. It is important to note that not all local authorities used the comment boxes to provide additional information about the services which they are providing. Therefore it is possible that the list of services below does not include all services that local authorities are providing to deafblind adults. Specialist Support Communicator Guides Intervenors Communication interpreters Mobility training to enable deafblind people to retain or regain the ability to travel independently Provision of training to volunteers so that they can effectively communicate with deafblind people Advice to deafblind people and their families about developing new communication methods Adaptations to deafblind people’s homes such as improved lighting or flashing doorbells Generic Services Referral to the RNIB Talking Book Service or to local libraries with audio book collections Social clubs for deafblind people or for those with various disabilities including deafblindness Referral to befriending schemes Unspecified one to one support Equipment Red and white canes Closed Circuit Television to enable those with limited vision to read print materials Computer software Loop systems Flashing doorbells Liquid level indicators Vibrating alarms Talking and Braille watches/clocks Tactile markers to denote settings on electrical and household appliacnes Telecare Equipment Minicoms Signature Guides Amplified and large button telephones Smoke alarms