A Sense of Urgency The deafblind population has been significantly underestimated and is set to rise dramatically (Sense summary of new independent research and the actions arising from the findings). Introduction (Richard Brook, Chief Executive Officer, Sense) Deafblindness is a growing issue in the UK. Almost all of us will have some experience of hearing or visual impairment at some point in our lives, either personally or with a friend or relative. However, as a society we are often guilty of being dismissive of deafblindness, putting it down to ‘getting old’ rather than treating it as a genuine disability and offering appropriate support. New independent research reveals for the first time that the number of deafblind people in the UK has been seriously underestimated to date and uncovers an ‘explosion’ in the number of deafblind people over the next twenty years. Here, we will set out clearly the scale of the problem and what needs to be done to support the deafblind community now and the benefits that early intervention will bring in the longer-term. Sense recommends that a number of key actions need to be taken, including: improved identification of deafblind people; planning and budgeting based on significantly increased future demands; improved health and social care assessments; and provision of appropriate and accessible social care services. These critical actions, which are outlined in more detail in this report, must be tackled now with a greater sense of urgency. The deafblind population requiring support Sense commissioned independent, expert research on the numbers of deafblind people now and over the next twenty years. In ‘Estimating the Number of People with Co-Occurring Vision and Hearing Impairments in the UK’, the Centre for Disability Research found that the deafblind population has been significantly underestimated and is set to rise dramatically. CeDR’s research method utilised a number of robust and representative surveys, and the report sought to collate information on the presence and sometimes nature and severity of vision and hearing impairment. This government accepted methodology was also recently used in estimating the learning disabilities population. The national situation now There are 356,000 deafblind people in the UK (572 per 100,000 people) 222,000 of these people are aged over 70 (62%) 113,000 are adults aged between 20-69 and 21,000 are children There are 2,900 deafblind people in an average area (250,000 population). Future explosion in numbers by 2030 There will be 569,000 deafblind people (806 per 100,000 people), a 60% increase 418,000 of those people will be aged over 70 129,000 will be adults and 23,000 will be children There will be 4,000 people in an average area This is an 86% increase in severe deafblindness to 245,000 people. Number of deafblind people in the UK by age band between 2010 to 2030 There are currently 21,000 young deafblind people (aged between 0 and19) in the UK. This figure is predicted to rise to 22,000 by 2015, and reach 23,000 by 2020. It is predicted levels will then remain stable to 2030. There are currently 56,000 deafblind people aged between 20 and 59 in the UK. This figure is predicted to rise to 59,000 by 2015, and reach 60,000 by 2020. By 2025, this figure is predicted to drop to 59,000, and fall further in 2030 to 58,000. There are currently 57,000 deafblind people aged between 60 and 69 in the UK. This figure is predicted to rise to 59,000 by 2015 and remain stable until 2025. At this point, numbers are predicted to rise to 66,000 and increase further to 71,000 by 2030. There are currently 222,000 deafblind people aged 70+ in the UK. This is predicted to rise to 254,000 by 2015, and reach 298,000 by 2020. Numbers are predicted to increase further to 348,000 in 2025 and 418,000 in 2030. There are currently 356,000 deafblind people in the UK in total. This number is set to increase to 394,000 in 2015, and reach 440,000 in 2020. Numbers are predicted to increase further to 496,000 in 2025 and 596,000 in 2030. Key national conclusions The real numbers of deafblind people needing support in the UK will actually be even higher. There is a reliance on self-reporting in surveys and older people often consider their deafblindness as part of getting old, rather than as a disability. Given the strong association between prevalence and age, the number of people with deafblindness was shown to vary considerably in line with the age-profile of the population. There will be a significant growth in cases of deafblindness over the next twenty years, largely driven by general demographic change. In particular, there will be a marked increase in the number of older people aged 70+ in the general population. The regional and local situation Compared to England CeDR’s results showed some variation in countries’ prevalence rates. In Wales, rates were higher among people in the 30-39, 50 59 and 60-69 groups, but lower in the 80-89 group. In Scotland, rates were significantly higher among people in the 50-59 age group. In Northern Ireland, rates were significantly lower among people in the 70-79 age group. The CeDR research has allowed Sense to estimate prevalence data for each demographic in all the UK’s individual local authority and health areas. This information is available via: www.sense.org.uk/urgency Sense’s response to the report - What is needed to meet this growing challenge? This CeDR report sets out the size of both the current and future challenge, but what needs to happen in the UK to meet this growing and urgent need? 1. Improved identification of deafblind people Local authorities should work more effectively with health and social care agencies to identify deafblind people. Government, local authorities and other organisations’ plans to address the needs of an ageing population must include identifying deafblind older people and providing appropriate services. If this does not happen, deafblind older people will be excluded and will continue to receive worse outcomes. Certain factors surrounding deafblindness can compound the impact of dual sensory loss, thereby leading to increased health and social care needs. Attitudinal barriers, where sensory loss is mistakenly seen as just a natural and inevitable part of the ageing process, can prevent people maintaining or regaining their quality of life. Isolation can also mean deafblind people may not feel safe going out of their house alone, yet inside they may be unable to speak on the telephone, read, watch television or listen to the radio. Responsibility for deafblind support. Local Authorities have a legal duty to identify deafblind people; ensure an assessment from a suitably qualified person; ensure people receive appropriate services; ensure a senior manager has responsibility for deafblind services. Is this a problem in your area? Sense regularly surveys local authorities’ performance in identifying, assessing and providing services to deafblind children and adults. In the latest survey, one authority has demonstrated that identification is achievable, having successfully identified more than half of their local deafblind population (relative to the CeDR estimates). However, most authorities are achieving considerably less, with a worrying number identifying no deafblind people at all! There is clearly a long way to go before all deafblind people are identified and properly supported. The full results of the 2009 performance survey will be published this autumn. To improve services for deafblind people, Sense has founded two groups of Local Authority Workers Interest groups, England North and England South. The groups are to help people who work in the area of dual sensory loss. Both groups meet regularly to share ideas, knowledge, experience, areas for concern and to provide peer support. They include deafblind specialist workers, sensory team managers and commissioners. Sense roundtable events Later in the year we plan to bring different partners together to discuss best practice and examples of where good support is being provided. We would welcome involvement by social care managers, service commissioners and local authorities. 2. Planning and budgeting based on significantly increased future demands and savings from early intervention Organisations must plan for a significant growth in support for deafblind people over the coming decades. With the right advice and support, such as one-to-one assistance, mobility and communication training or equipment, deafblind older people can be enabled to live active and healthy lives. This can help prevent or reduce the compounding negative impact of deafblindness. Older people with dual sensory loss are more likely to develop additional health conditions such as stroke, arthritis, heart disease, hypertension and symptoms of depression. They are also more likely to have falls. They often have higher rates of mental distress. Deafblind older people are also more likely to have difficulty with moderate exercise, mental stimulation, maintaining social contact and healthy eating. In a tough economic climate, early intervention using relatively inexpensive support for deafblind people will lead to future savings, due to reductions in preventable health conditions. Ensuring deafblind older people get specialist assessments and well targeted support often actually saves money. The provision of more communicator-guides is one example. Comparatively small financial investments can transform people’s lives. Communicator-guides are trained with specific deafblind awareness and knowledge. The amount of support someone receives varies enormously, from as little as a few hours through to 40 or more hours per week. Receiving this support can make a massive difference to the quality of deafblind people’s lives. However, at the present time very few older deafblind people are in receipt of more than five hours per week There are also financial savings to be made. For example, deafblind older people’s incidence of stroke is nearly four times higher. Stroke has a greater disability impact than any other chronic disease. Every year the cost to the UK of handling stroke sufferers is £6 billion. Given the growing number of deafblind older people in the UK, supporting them to have healthy lifestyles, such as help with their exercise and diet and bringing their stroke incidence in line with the rest of the population, would make substantial savings. The focus must be on identification of deafblind people at the earliest stage. This will ensure that this increasing part of the population maintains the quality of life that they deserve, as well as providing significant financial savings. 3. Improve health and social care assessments Deafblindness should be recognised as part of mainstream older people’s assessment in both health and social care, including single assessment processes. Specialist assessment is a requirement under the Deafblind Guidance and is essential for ensuring that people get the right support. This also saves money later. Older people should have regular access to sight and hearing tests and relevant clinics should take account of the impact of dual sensory loss. Sense supports deafblind people to access assessments. 4. Provision of appropriate and accessible social care services Appropriate services which enable deafblind older people to retain independence, maintain important relationships and be part of their local communities are needed. A common sense culture and joined-up working can make all the difference to people’s lives. These include: One-to-one support from a communicator-guide Communicator-guide schemes are a lifeline to many deafblind people, helping them to remain independent. They provide communication support, practical help at home, and enable a deafblind person to get out and about. Schemes can be run by local authorities themselves or in partnership with other organisations. A personalised approach Deafblind older people should be offered the choice to receive more personalised support, through direct payments or a notional or cash personal budget. However, deafblind older people must receive a specialist assessment for social care. Any resource allocations system needs to meet the costs of specialist care and support needed by deafblind older people. Appropriate assessment will save resources in the longer-term. Appropriate support helps older deafblind people to: Live independently; maintain a healthy lifestyle; be socially active; maintain good mental health. Mental health services Deafblind older people should have access to the whole range of mental health services, including talking therapy, in order to prevent conditions such as depression. 5. Government policy that recognises the significant and growing support needed for deafblind people The Government’s Commission on Long-Term Social Care must take into consideration the growing number of deafblind older people. The government is aware of the looming crisis, due to the growing number of older people who will soon need long-term social care. Sense is asking for recognition of deafblind older people and their needs when looking at funding. One example is that deafblind older people are one of the groups that do not necessarily need support with personal care, but do need support with communication and mobility, which is every bit as important as personal care. 6. Support for organisations such as Sense There are a wide variety of ways that individuals and organisations can help. Financial support is, of course, an important way to help with the charity’s work, but there are also many other ways. You can support campaigns to raise awareness of, and attitudes towards, deafblindness and seek changes to the support and services that people receive. To find out more about what you can do to help visit the sense website. Campaigns information: www.sense.org.uk/campaigns or Sense shops, events and fundraising: www.sense.org.uk/support Who Sense helps and how Sense is a charity that benefits children and adults who are deafblind. Specialist information, advice and services are provided to deafblind people, their families, carers and the professionals who work with them. People who have sensory impairments with additional disabilities are also supported. Sense services include: Community services such as: intervenors/communicator-guides; mobility & communication enablement; holiday & activity schemes; supported living assistance; support groups & forums; and behaviour support. Reablement pilots A new Sense approach to reablement is seeking to support older deafblind people to maintain their independence and avoid higher long-term care costs. With the right support many older deafblind people could live more independently for longer. Sense is looking for a small number of local authorities to pilot this work. Children’s services include: assessments, intervenor services, education support, schools liaison and statementing support. Residential services include residential living for deafblind individuals. Sense works with: Deafblind people, policy makers and key external partners to ensure that the needs of deafblind people are included in all relevant policy decisions. Sense campaigns with: Deafblind people, carers, professionals and other stakeholders to create changes which put deafblind people in control of their lives. Sense also provides: Information, advice and research, as well as carrying out international relations and corporate affairs activities. Useful resources Sense has pulled together a range of key resources related to this report, including: numbers of deafblind people in each local area; support and services that they require; legal requirements; and organisations that are able to help. All of this information can be accessed at: www.sense.org.uk/urgency Further information For a copy of this report in another format, such as braille or audio tape, or for any other enquiries please contact us. Email: info@sense.org.uk tel: 0845 127 0066 fax: 0845 127 0061 text: 0845 127 0062