Sense Local Authority Survey Report Deafblind Children Services 2009-2010 Throughout this document, a text description of key information from figures is given. 1. Introduction 1. a Background Last year the Department of Health reissued Social Care for Deafblind Adults and Children (LAC 2009)6. This was done to emphasise that all English local authorities must provide deafblind children and adults with services. Similar guidance has been issued by the National Assembly For Wales. This report outlines the results of the 2009-2010 Sense survey of local authority services for deafblind children, which was carried out between September 2009 and April 2010. The survey looked at the extent to which the guidance is being implemented by local authorities throughout 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 children. A separate survey has been carried out on services for deafblind adults. The report on services for deafblind adults will also be published in autumn 2010. 1. b Response Rate In 2009-2010, 40 local authorities replied to Sense’s survey of services for deafblind children. This represents 23% of local authorities in England and Wales. 28 of these authorities also completed the survey in 2007. These form the basis for our year on year comparisons. The accuracy of the data in this report is dependent on the diligence of the people filling it in. The data is self-reported by local authority staff. The statutory guidance applies to services which are generally provided by social services departments. In terms of children it therefore applies to services provided outside of usual school hours. However, increasingly there is a closer working relationship between education staff and children’s social services so many of the survey forms have been completed by staff working in educational settings. We are reliant on them to only include information about services provided by or on behalf of social services departments. 1. c Report Summary Although the number of deafblind children identified by responding local authorities remains far lower than Sense believes it should be, there has been a very significant increase since 2007. However, many of these children have yet to be offered a specialist assessment. There have been small increases in the number of children being given intervenor support and more general one to one support. Sense believes that the reissue of the guidance has given fresh impetus to local authority efforts to provide services to deafblind children and has underlined the importance of ensuring that all aspects of the guidance are comprehensively implemented. It is of concern that many authorities have still not appointed a senior manager to oversee services for deafblind children. The challenge for local authorities is to continue identifying deafblind children, to provide them with timely specialist assessments and to ensure that services for deafblind children are given appropriate resources. 1. d Key Findings * On average local authorities are only identifying a third of the deafblind children Sense believes live in their catchment area. * Under half of children identified as deafblind are receiving a specialist assessment of their need for services. * Almost 60% of those provided with an assessment are receiving one to one support. * 44% of those receiving one to one support receive intervenor support. * Only 60% of local authorities have appointed a senior manager to oversee services for deafblind children. 2. Analysis 2. a Identification Sense estimates that there are 31 deafblind children per 100,000 of the general UK child population. If we use this as the benchmark by which local authority identification rates are measured they are only identifying slightly more than a third of the deafblind children that live in their area. The 40 local authorities who replied to the survey reported that they had identified 295 children. This represents an average of 11 per 100,000 of the general population, just over a third of the 31 per 100,000 each local authority should have been identifying. Whilst it is disappointing that identification rates remain so low, there is an upward trend. In the 28 authorities who responded to both the 2007 and 2009 surveys the number of children identified rose from 205 in 2007 to 256 in 2009. This is an increase of 25%. The general rise in the number of children identified as deafblind is reflected in particular local authorities. Dudley Metripolitan Borough Council have increased the number of deafblind children they have identified from 5 in 2007 to 12 in 2009. Sense believes that the reissue of the guidance has reminded local authorities of the need to be proactive in identifying deafblind children and has given a fresh impetus to this work. Sense hopes that local authorities can continue this upward trend of identification in the next few years. 2. b Assessment Having identified a deafblind child, the local authority should assess their need for social services support. The assessment should be undertaken by a trained specialist with theoretical and practical knowledge of deafblindness. They should understand the issues which having a dual sensory impairment will cause that child in terms of communication, mobility and access to information. Assessment by a properly qualified individual is the vital connecting step between identifying a child as being deafblind and the provision of appropriate services. Disappointingly only 42% of deafblind children had been given a specialist assessment (125 children). The proportion of children assessed has actually fallen from 53% in 2007. It is frustrating, but perhaps explicable, that assessment rates are declining. Sense understands that it will take time for all newly identified deafblind children to be assessed. We hope that in the next year local authorities are able to offer all newly identified deafblind children a specialist assessment which explores their need for services. Local authorities should use this assessment as the first step in providing deafblind children with the support that they need. 2. c One to One Support 58% of children given an assessment were receiving one to one support of some kind. Deafblind children need support to access and understand the world around them. This is often provided through an intervenor, who works with the child to help them interact with the world and develop skills. 44% of the children being offered one to one support were being provided with an intervenor. Other Services Intervenor services form a sizeable component of local authority support to deafblind children and their families. However other forms of support were provided by several local authorities. These included short breaks with trained volunteers, the provision of specialist equipment and the inclusion of deafblind young people within leisure clubs for those with a variety of disabilities. Aiming Higher funding would appear to have proven beneficial to some local authorities in establishing and maintaining these services. It is to be hoped that this provision can be maintained after the ending of Aiming Higher funding in 2011. Some authorities said that none of the children they were supporting required specialist communications support but that care packages were in place to support the deafblind child’s family. Sense would argue that the reissue of the guidance has served as a timely reminder to local authorities about the importance of ensuring that services meet the needs of deafblind children. The guidance reissue emphasises that identification is only the first step in providing comprehensive services to deafblind children and their families. Since the reissue of the guidance there has been a slight increase in intervenor support. In comparable authorities in 2007, 21 children were being given intervenor support. By 2009, 24 children were being given this kind of support. However this small increase has to be measured against the fact that local authorities identified 51 new children as deafblind between 2007 and 2009. Sense understands that local authorities are using various support measures to meet the needs of deafblind children. Not every deafblind child will benefit from or need the support of an intervenor. However it is worth emphasizing just how beneficial intervenor support can be for congenitally deafblind children with little understanding of the external environment and few communication skills. It is to be hoped that local authorities will strive to provide intervenor support to all deafblind children who need it. 2. d Management Responsibility The guidance states that each local authority should appoint a named senior manager to oversee and take ultimate responsibility for services for deafblind children. This is a legally binding requirement on all local authorities. The survey of services for deafblind adults has consistently shown that over 90% of local authorities have a named senior manager. Disappointingly only 60% of local authorities have appointed a named senior manager for deafblind children’s services. This is something which Sense believes local authorities must remedy in the coming year. A senior manager should ensure that all parts of the guidance are being implemented, and should work with colleagues to ensure that adequate resources are provided to meet the needs of deafblind children. 3. Conclusion There have been some positive developments in services for deafblind children. The number of children identified as deafblind remains far lower than Sense would wish. However there has been a remarkable increase in identification rates over the last two years. Understandably, local authorities are still assessing the support needs of recently identified deafblind children. Local authorities must now strive to increase the numbers of deafblind children they have identified: to ensure that as far as practicably possible specialist assessments are carried out in a reasonable time period: to ensure that all deafblind children are receiving the specialist support recommended in that assessment, and to appoint a named senior manager who can oversee comprehensive implementation of the guidance. Many positive developments are already taking place. Local authorities should strive for further improvements to services in the year ahead.