Commission on Funding of Care and Support Call for Evidence on the Future of Care and Support A response from Sense Executive Summary The term deafblind includes a number of people including those born deafblind with very complex support needs as well as those losing hearing and sight in older age whose needs will be lower but every bit as important. These groups have some factors in common. Their needs are predominantly not for personal care but for support with mobility, communication and access to information. They also tend to have higher than average costs to meet such needs, either because they require skilled support which costs more per hour than average, or because their needs are complex and they require very large packages of support. Sense believes that a fair system for providing care and support will not discriminate against people because their support is high cost or because it is for needs other than personal care. Sense strongly supports the Commission’s view that there is not sufficient funding in the system at present. This is leading to unmet need. There is evidence that provision of low level support represents value for money as it prevents people developing more expensive health or social care needs. Deafblind older people, for instance, have higher rates of a number of health conditions. All the advice older people are given about staying healthy is more difficult to follow if a person is deafblind and has no support. Sense therefore supports a system of funding social care that: * Is funded through a Government “national insurance” system where people pay in according to ability to pay. * Provides a minimum entitlement to social care support sufficient to meet a basic quality of life. This should include the ability to get out of a house, interact with others, have leisure activities, work/volunteer if appropriate and take some form of exercise. * Recognises that support with mobility and communication is equally important to personal care support. * Is available to everyone regardless of where they live. * Eliminates means testing and charging, in order to encourage take up of low level support. * Includes a national fund for those with very high support needs to avoid undue burdens on individual local authorities. * Recognises that disabled people require a disability benefit to assist with the additional costs of disability in addition to having their support needs met. These costs are not removed because social care support is in place. About Sense Sense is the leading national charity that supports and campaigns for children and adults who are deafblind. We provide expert advice and information as well as specialist services to deafblind people, their families, carers and the professionals who work with them. We also support people who have sensory impairments with additional disabilities. Our services include on-going support for deafblind people and families. These range from day services where deafblind people have the opportunity to learn new skills and Sense-run houses in the community – where people are supported to live as independently as possible. We also provide leading specialist advice, for example on education options and assistive technology. About deafblindness Deafblindness is a combination of both sight and hearing difficulties. Most of what we learn about the world comes through our ears and eyes, so deafblind people face major problems with communication, access to information and mobility. People can be born deafblind, or become deafblind through illness, accident or in older age. The most common cause of deafblindness is older age. Any system which is put in place to support an ageing population must take account of the fact that a significant number of those it aims to support are deafblind. Deafblind older people cannot easily use mainstream services unless those services are aware of how to adapt to the needs of a deafblind person. There are a number of conditions which cause deafblindness during childhood or working age. Many of these are progressive conditions, where hearing and/or sight deteriorate over time leading to increasing needs for support. Those who are born deafblind often have very high levels of need throughout their lifetime. A person born with a high level of hearing and sight loss will struggle to learn and may never develop formal language. The causes of congenital deafblindness have changed over the last few decades. When Sense was founded over 50 years ago, one of the most common causes was maternal rubella syndrome, and we support some of those people, now adults, in care homes or supported living. Many children born deafblind today have been born premature and have complex additional health needs. Their needs as adults will be very different from those born deafblind years ago. The support that deafblind people need Deafblind people therefore experience a range of different needs and circumstances. Example 1: J is a 40 year old man, born deafblind due to congenital rubella syndrome. He has very little hearing and sight and profound learning disability. He communicates using objects of reference and body language. He has very little understanding of the world around him and needs support staff to enable him to interact with the world. If he is not properly supported he will use challenging behaviour to express distress or unhappiness. The staff who work with him are trained to use touch to enable him to interact with the world and to interpret his behaviour to ensure they are providing the right support. He needs one to one support for most of his waking hours and staff available throughout the night. He would receive this either or through a specialist residential care home or through a specialist supported living service in his own flat. Most people in J’s position receive a significant package of support. However, their parents are likely to have struggled, often for several years, to get such a package set up. Example 2: M is 33 and was born deaf. She grew up using sign language and from her mid teenage years her sight began to deteriorate through tunnel vision. She lives with her husband and two young daughters. Her sight will continue to deteriorate throughout her life. Currently she receives some support from a communicator guide who can use sign language and knows how to adapt this to M’s limited vision. The communicator guide acts as a guide when M leaves the house to go shopping or to school parents’ evenings or medical appointments. As M’s vision deteriorates she will need increasing amounts of support. Most people in M’s position will receive only a few hours per week of support. If they receive direct payments or an individual budget this will often not take account of the high hourly rate that a worker with the necessary communication skills will cost. Example 3: S is 82 and lives alone. She had hearing and sight for most of her life, but now has so little of each that she cannot use speech to communicate. Over the last 2 years, a skilled support worker has introduced her to deafblind manual, a tactile form of communication involving spelling letters onto the hand. She now uses this for all receptive communication, although she is still very slow. She now has support from a communicator guide for a few hours each week. Without this support she is unable to leave the house or to read her correspondence, bills, etc. She is able to get around her own home, cook basic food and needs no support with personal care, but she cannot leave the house or communicate with others without support. When alone she cannot read, watch TV or listen to radio or books on tape. Many people in S’s position will receive perhaps only 2 hours of support per week, though some will receive considerably more. These examples may seem diverse, but they also have some factors in common which are important to the work of the Commission. * Type of support need – Deafblind people do not predominantly need support with personal care. The majority of their support needs relate to mobility, communication and access to information. * Cost of support – Deafblind people often require support from people with specific skills, such as communication skills. This can mean that the hourly cost of this support is higher than average. Those born deafblind often require a high level of ongoing intensive support which can make their total care package comparatively large. We will refer to these two factors throughout our response. Future care and support needs The single most common cause of deafblindness is older age, and this is likely to mean an increasing number of deafblind people requiring support specifically related to deafblindness. There are an estimated 222,000 people in the UK aged over 70 who are deafblind. This is likely to rise to 418,000 by 2030. The total numbers of deafblind people of all ages are currently 356,000 rising to 569,000 in 2030.1 However, the needs of this group are currently often overlooked when planning services and when assessing individual needs. A significant proportion of older people will have a loss in one or both senses. This is often overlooked and seen as an inevitable part of the ageing process for which no support is required. The failure to recognise sensory needs of older people means they do not receive services which could be preventive, but may also mean they receive inappropriate support. For instance, a person who is socially isolated may be offered a place in a day centre. If their hearing and sight mean that they cannot communicate in a noisy environment then this is a waste of resources and can make the person feel more isolated than if they were alone at home. There are also demographic pressures leading to an increasing number of young adults with highly complex needs.2 Until 2020, changes in the birth rate result in a reduction in the number of young adults with profound and multiple learning disability, which will include many congenitally deafblind people, entering the adult social care system. After 2020 this group will begin to rise again. Although the numbers are relatively small, the cost of meeting their needs is relatively high and this group will not have any assets or income to pay for services. Safety net We agree that the current system provides a safety net, but would argue that the level of this is far too low. For deafblind older people with modest means, the charging system can leave them with so little income that they are unwilling to pay and thus forgo support which could benefit them, and potentially benefit state finances through prevention. Although earned income is not chargeable, for those of working age it is impossible to build up savings beyond the level at which charging begins, as any additional savings will be re-claimed in charges. Some forms of retirement planning, such as buy to let, are also not open to people as the assets would count against them when being assessed for charges. So the life options of people disabled during their working life are limited by the current funding system. The safety net in terms of what level of support a person can receive is also extremely low especially in those authorities where only critical needs are funded. Even where the term critical is interpreted correctly, the level of a person’s needs has to reach a very significant level before it would be considered critical. By definition a profoundly deafblind person who can no longer communicate using speech will find that they meet the critical eligibility criteria: “vital social support systems and relationships cannot or will not be sustained; and/or vital family and other social roles and responsibilities cannot or will not be undertaken.” Yet Sense has seen assessments of people with no useful hearing or sight assessed as merely substantial. There cannot be many deafblind people, even those with some hearing and/or sight remaining, whose needs would be less than substantial. Prevention The level of the safety net matters, not just in terms of people’s quality of life, but also in terms of value for money. We agree that prevention is critical in reducing long term needs for support as well as delivering better outcomes for individuals. There is significant evidence of the benefits of low level support to prevent higher level needs. The way the current eligibility criteria are implemented by councils tends to focus all resources on higher level need. The guidance on eligibility is clear that raising eligibility thresholds can be counter productive in relation to prevention. “Councils should therefore avoid using eligibility criteria as a way of restricting the number of people receiving any form of support to only those with the very highest needs. Rather, they should consider adopting a strong preventative approach to help avoid rising levels of need and costs at a later stage.”3 However, we have seen increasing numbers of councils raising eligibility criteria in the last few years, and a number (Isle of Wight, Birmingham) currently consulting on funding critical needs only. Example Sheila (not her real name) is an elderly deafblind woman who lived alone for the whole of her adult life. Sheila’s hearing deteriorated from her mid 50s onwards and then she developed macular degeneration and glaucoma and is now profoundly deaf and blind. Sheila found that communicator guide support made a huge difference to her ability to get by, but she was only given 2 hours per fortnight of support. Sheila became increasingly confused due to her deafblindness and her brother who helped with her care found he was unable to cope. The decision was made against Sheila’s wishes to place her in residential care. Sheila is now on her fifth local authority funded residential placement. The staff at the home do not know how to support her. Sheila is isolated, frustrated, anxious, and angry and as a result she displays challenging behaviour including urinating on the carpet. During their weekly visits Sheila begs her family to help her to commit suicide. The Sense professional working with Sheila firmly believes that if Sheila had been given 2 hours per day of communicator guide support at an early stage to help her to readjust to her sensory impairments and thereafter 3 hours twice a week of one to one support, then Sheila could have remained in her own home. This would have been significantly cheaper than the residential placement which became necessary. Much of the prevention focus uses a very narrow concept of “reablement”, normally 6 weeks of intervention. Sense feels this focus is far too narrow. Rehabilitation services for visually impaired people and communication development for those who have become deafblind are long term interventions not achieved in a 6 week period. However, as the case of Sheila above demonstrates, deafblind people can benefit from interventions aimed at increasing their skills and decreasing the amount of support they will need in the long term (though this is unlikely to reduce to zero). If deafblind people do not get the support they need, the impact on their physical and mental health can be profound. For example, research has found that older people with dual sensory loss are more likely to develop certain additional health conditions such as stroke, arthritis, heart disease, hypertension, falls and depressive symptoms. 4 By definition, deafblind older people will be more likely to have difficulty with all the activities recommended in order to remain healthy: moderate exercise, mental stimulation, maintaining social contact and healthy eating. Offering deafblind older people the right preventative support could reduce this cost and crucially preserve their wellbeing. Without support, deafblind people are also unable to access other preventative services. Exercise is critical in maintaining good health as well as lowering the risk of falling, since muscle weakness and poor balance are the main problems of those who are at risk of falling. As well as the health and well-being benefits of decreasing the number of falls, lowering the number of fall related injuries will also reduce the associated healthcare costs.5 However deafblind people often lack the opportunity to engage in physical exercise – whether it be formal exercise in gyms or sports centres, or even walking, which is recognised as one of the most suitable forms of exercise for older people. 6 7 The cost of treating falls related injuries in the over 75 age group is £383,000,000 per year. Deafblind people have a three times higher rate of falls than hearing sighted people of the same age, so that preventing even some of these would represent a significant cost saving. A number of our members told us that one of the things that they want to do but are unable to for lack of support is exercise – join a gym or go for a walk. This is important to their health and to their quality of life. We know from our experience of supporting deafblind people that this is exactly the sort of support that social care rarely provides. Maintaining social contact is also vital to maintaining good health. Although the current FACS eligibility criteria recognise that involvement is as important as health and safety, the needs of deafblind people for social interaction are too often deemed not to meet critical or substantial eligibility criteria. They are simply not seen to be as important as personal care. Too often we hear of deafblind older people who are considered to be ‘safe’ in their favourite chair at home with little other support or intervention. Without support, they become prisoners in their own home, isolated from friends, family and community, with a lifestyle that threatens their physical and mental health. “From leading an enjoyable, full and active life – I am now down to nothing…now I can only watch TV (close seat) and have to make up my own dialogues. Strange but friends do desert you when you cannot communicate.” 8 The difficulty in maintaining relationships with their spouse, friends, and family can have as much impact on a person’s life as the actual difficulties and problems associated with visual impairment that affects individuals.9 Good personal relationships provide practical aid, emotional support, information, assistance with decision making, and opportunities to broaden existing support networks.10 Personal relationships also provide important protection against stress and psychological illness. Good interpersonal relations, group participation, and social activities are recognised as an important way for people with acquired sensory loss, to deal with the profound experience that this loss brings and which affects their functional independence and health.11 Unmet need Sense asked our members about what services they currently receive, whether they think they receive enough and if not, how they are coping. We received a range of responses which inform the following section. From these responses and our experience of supporting deafblind people to access support we can identify a number of reasons for unmet need: * Operation and interpretation of eligibility criteria * Charging and costs * An assumption that carers will pick up the role of providing support * Transport that is not seen as the role of social care Eligibility criteria In general deafblind people do not make reference to eligibility criteria in their responses on unmet need. In our experience, many social services staff are unclear about how eligibility criteria should work and particularly how they relate to deafblind people’s needs. The definitions of each band do not make explicit reference to communication or mobility support, and as seen above, non personal care related support is often assessed as substantial when it should be critical. As seen above, meeting these support needs can be critical in enabling people to lead a healthy lifestyle, so preventing physical and mental health problems developing. When asked what they would do if they had more support, a number of our members made reference to things which would be clearly preventative. “Go out for walks in the fresh air” “Get out the house more than once a week” “Go for walks” “Exercise, walking” “Safely go swimming” “Get to church and then made to feel welcome there” “Visit family and friends” “Have my own friends” Charging A number of respondents said they did not have enough support because they could not afford to/were not willing to pay for services. “I don’t manage. Social Services say I have to pay. I can’t afford it. They say use DLA”. “I would have to pay and I can’t afford it.” The issue of high costs affects deafblind people because they tend to face relatively high costs of care, whether that be the large packages of support required by those with very complex needs, or the higher than average cost of meeting needs when specific communication skills are required. The current charging system penalises those with higher than average care costs, because their charges are also correspondingly higher. Once a person becomes liable for charges they are effectively charged for 100% of their services up to the point where they hit the ceiling of having only income support plus 25% remaining. This means that some people turn down significant amounts of support because as soon as they agree to one hour of services they are charged. For instance, a person may be assessed as needing 10 hours per week of support. They may be charged £10 per hour for this, but their income is low, so they would only have to pay £50 of this. However, if they are not willing to pay, they lose not only the 5 hours they have to pay for but also the 5 hours that would in any case be free. A much more efficient use of public funds would be to allow the first hours without charge, to encourage take up of low level potentially preventive services even if the person was not willing to pay for the remaining hours. Carers The majority of those not receiving sufficient resources said that they were coping because family were carrying out the support. This had effects both on the carers and on the person concerned. People do not necessarily want to rely on family members, especially parents, to live their lives as independent adults. In one case the person said that they had been told by the council that they were not eligible for support simply because their parents lived locally. “I want holidays and time away from mum and dad.” “It falls to my mum whom I live with. She has her own health issues and things are desperate.” “I manage by my family having put their life on hold for 24 years.” “I have no support because I have (elderly) parents in the area.” “I need support because my family was busy.” The reliance on carers, particularly ageing parents is not necessarily a good way to address care needs. As family carers get older, the burden on them feels greater. Packages may have to be put in place in an emergency following the death or hospital admission of a parent which is not ideal in terms of providing quality care. A reliance on parents for your support when you are an adult may also not be appropriate. Transport not seen as social care Hodges and Douglas12 highlight some of the particular problems experienced by people with a dual sensory loss in relation to transport. Independent or even supported travel is also difficult for many people with vision and hearing loss, as described above. Added to the difficulty in getting information about transport services is the difficulty in communicating with transport services when travelling. Even transport providers for people with disabilities do not always understand the particular needs of those with dual sensory loss.13 Having reliable transport is necessary to do the things that you want to do in the majority of local communities, but one particular issue of importance is access to health services. Some deafblind people find that social services is not willing to fund support to travel to NHS appointments on the grounds this is an NHS responsibility. The NHS refuses to fund it on the grounds that they are responsible for interpreting once the person arrives for their appointment, but not for the travel to and from. Hospital transport schemes may not be suitable as they often refuse to carry a communicator guide, only the patient, but the drivers are then unable to communicate with their passenger. People are therefore unable to attend appointments without using some of their often limited support intended to enable them to live the life they want. Sense has also come across one authority which refuses to allow deafblind people to use social care support in this way, on the grounds that this is a health responsibility. This has left some deafblind people unable to access NHS services. Personalisation Sense supports the aims of personalisation of giving people choice and control. However, the rhetoric about personalisation is at odds with the low level of safety net described above. If you can receive support only when your needs reach critical band then choice and control over your life will be extremely limited. In addition, in many areas, personalisation has been introduced using mechanistic resource allocation systems (RAS). These often lead to deafblind people’s needs not being recognised as the questions and the points weighting relate to personal care rather than other aspects of support. A clear example of this bias can be seen in the ADASS Common Resource Allocation Framework.14 This asks a series of questions and allocates points according to level of need in each area. If the answer to the question related to personal care needs is: “I need frequent support / encouragement with my personal care (e.g. several times a day)” this will accrue 13 points. Up to a further 10 are available if support is needed with eating and drinking. The answer to the question about needing support to be part of the local community: “I want to be part of my community and regularly need a lot of support to do this (e.g. daily or several times each day)” merits only 6 points. There is a clear bias here in favour of supporting people with personal care needs above those with other types of support need. There is no question on the Framework about communication, mobility or access to communication, indeed communication is addressed in less than half of the RAS questionnaires that Sense has seen. The RAS is a crude estimate of the budget required to meet needs. Two people can have identical need in terms of RAS questionnaires, but what matters for the budget they require is not the level of need but the cost of meeting that need. Almost none of them allow for the higher costs of those who need specialist support such as sign language or deafblind manual. There are a range of groups who find their needs missing from many of the RAS currently in use, which has led a number of organisations to produce Putting Everyone First (see attached) to help local authorities understand and address the ways in which people may be excluded by RAS systems. Local need We agree that any system for social care must be responsive to local need. However, we do not feel that the majority of local differences in the current system relate to differences in local need. The current eligibility system allows local authorities to set their own eligibility criteria, within the relevant guidance. This means that a deafblind person in one area may have low level needs met, while in another area they may need to have critical needs before receiving any support. This difference has nothing to do with needs of local people. Equally some deafblind people find it easy to receive an appropriate service, whilst others fight to receive anything which will meet their needs. This can be related to whether the local authority has a specific service for deafblind people. Clearly areas with a high elderly population will need a larger sensory service than one with a younger than average population. However, both areas will have deafblind people who require specialist services. The current trend towards generic social work teams is seeing a loss of specialism that will impact negatively on deafblind people. We believe that there should be a basic minimum standard of life that anyone can expect whatever area of the country they live in. Local councils may decide to fund more than this, but the basic level should be met in every area. We believe that FACS ‘critical’ only is far too restrictive to be an appropriate level to set this minimum, both in terms of quality of life and outcome for the individual and in terms of value for money. How the funding system might be reformed Resources Sense strongly supports the Commission’s assertion that increased resources need to be dedicated to care and support in future. This truth is undeniable when all the demographic trends are taken into account. Like every other organisation working in the sector Sense has experienced this with increasing charges, tightening eligibility, local authorities attempting to squeeze ever more “efficiency savings” from providers. We have seen first hand the effect this has on deafblind people, as we face increasing demands on our advice and support services to help people argue the case for services, and increasingly, to defend access to the services already received. Unmet need is clearly increasing, a trend which is likely to continue as a result of cuts in local authority budgets following the comprehensive spending review. Many authorities are raising eligibility criteria and/or charges and we expect to see some deafblind people losing services from April. This, despite the fact that raising eligibility criteria is a short term solution, and often leads to increases in those with higher level support needs at a later date as people’s conditions deteriorate due to lack of support.15 The public needs to understand that provision of more resources for social care and support is inevitable. People do not currently pay into any Government system for care and support other than a very bare minimum safety net that a majority will never benefit from as their assets will be too high. It may be that the Commission is in a stronger position than the Government to make some of these points in the public arena. Required outcomes Before it can be determined how much resource is required it needs to be decided what outcome is required of the system. Sense strongly supports the Commission’s principle that the system should promote the well-being of individuals and families, and in particular helping everyone to participate in the wider community. This principle can neither be met by a system that funds only critical needs, nor by one which ignores deafblind people’s need for support with mobility and communication. By implication, therefore, a system is needed where the safety net is set higher than it is currently. Those with no ability to pay into the system, such as those with significant needs since birth, will need sufficient support to achieve this outcome. For some congenitally deafblind people this will mean 24 hour one to one support along with suitable accommodation. For many others it would be significantly more support than they currently receive. Sense believes there should be a nationally agreed understanding of what quality of life is acceptable for a person who needs social care support. Whatever the funding system, people’s payments in must buy an entitlement to sufficient support to meet this quality of life. This should include the ability to get out of the house, interact with others, have leisure activities, work/volunteering if appropriate and to take some form of exercise sufficient to maintain good physical and mental health. For the reasons outlined above this would also be cost effective in terms of preventing deterioration in health. Funding such a system When Sense consulted our members about funding for social care at the time of the last Green Paper on care and support the most common response was that some form of taxation, national insurance or insurance scheme underwritten or run by government should fund care and support. This was felt to be fair because everyone who can afford to do so pays in. A level of compulsion was seen as fair. One or two respondents did not trust government, but a larger number said that they did not trust private insurance companies. Some felt that no one should be making a profit out of funding the care and support system. This is in line with other evidence of public opinion such as the previous Government’s engagement findings in preparation for the Green paper on social care in 2009. In general, participants felt that government is best placed to collect and administer funding for care and support.16 More recently the IPPR found that 85% of people thought that either central or local government should be responsible for funding support for older people. Only 1% thought charities.17 Sense therefore supports the funding of care and support through a national insurance scheme, with people paying in during their working life according to ability to pay. Those who were unable to pay in, for instance because they were not working, should have access to an equal level of support to those who have paid in. Sense believes that such a system could be made to work if it was clear that this was a ring fenced pot of money to fund care and support, so that it was not perceived as general taxation. Ideally such a system would be funded in such a way that there was no requirement for charging. Since everyone is paying in they would all expect to receive some support. If means testing were necessary we believe that everyone should receive a certain level of support free, before being means tested for support above this level. This would prevent people refusing low level packages on grounds of cost where those packages could be the most cost effective because of prevention. One challenge for local authorities in the current system is that small numbers of people with very high support needs can disproportionately affect local budgets, especially in smaller authorities. Some congenitally deafblind people would fall into this group, having very high support needs and no means of funding this themselves. Local authorities will resist accepting responsibility for funding a service when a person moves into their area, or will refuse to fund a package that adequately meets needs on grounds of cost. Parents of deafblind children approaching transition to adult services often battle for several years to get their son or daughter an adequate service. Some local authorities have used the Independent Living Service to top-up large packages of support. Whilst this was not the original intention of the fund, it is how many authorities now use it. Sense believes there is merit in having a central fund which will contribute towards the cost of any very expensive package. We do not believe that relying on the value of people’s property is a sustainable way to fund the system. The current generation of older people have significant wealth held in property, having benefited from an era of house price boom and easily obtainable mortgages. Releasing this capital into the system could in the short term be successful. However, we do not believe future generations will be in the same position. Therefore, whilst this may help the immediate problem for the current generation, we believe it should see this as temporary and put in place a system of working age payment, as outlined above. We believe that the system should provide sufficient resource to meet the basic care needs of everyone (subject if necessary to means testing/charging). As well as care and support needs disabled people face other costs, for example taking a taxi where others would take public transport, paying people to do jobs around the home that others would do for themselves. Disability benefits aimed at meeting these additional costs of disability (currently DLA and AA, in future to be the new PIP) should not be used to fund care. The benefits use the level of care needed as a proxy for additional costs; they are not intended to pay for that care. We believe that there is a continuing need for a disability benefit to support the additional costs of ordinary every day expenditure that relate to having an impairment. We do not see how requiring people in care homes to pay the “hotel costs” of their package is realistic for the majority of people. It is reasonable that they pay for their accommodation costs, using housing benefit where eligible, but this should be equivalent accommodation costs as though living in a person’s own home. Most people’s weekly budget does not include paying for cleaners, cooks, people to do their washing up and laundry. These are things they require because of their disability and should be seen as part of their care costs. If low level support needs are met at an early stage we would anticipate that the majority of people will remain in their own homes. How such a system would work in relation to the Commission’s criteria: Sustainable and resilient The amount paid in would need to be reviewed on a regular (perhaps annual) basis to ensure that any significant changes in projected cost of care and support (up or down) are taken quickly taken into account. What must be avoided is a build up of under funding due to failure to review payment into the system. This could be done by an independent body. We cannot see any other way to ensure that whatever system is established will be able to react to future, possibly unforeseen impacts on the cost of funding care. Fairness There are two aspects to fairness – payment in and services received. Payment in should be related to ability to pay. A flat payment is not fair, since some people will struggle to raise sufficient funding whilst others will pay easily. Sense does not believe that insurance will work to fund social care for a number of reasons. We do not believe it meets the fairness test as people pay in a flat rate, rather than related to ability to pay. There will be those who cannot afford to pay and will not do so unless the system is compulsory. Others will easily cover the premiums. As we have seen with a number of other pension investment schemes, there is no guarantee that what you receive at the end of the scheme is sufficient for your needs and if not underwritten by government it is possible for a person to lose all their money just at the point they were about to need to benefit. The other aspect to fairness is what people get out of the system. This is critical to deafblind people as their needs are so often under-valued in the current system. The system must be fair to those whose needs are not for personal care. As well as deafblind people this will include those with learning disability, mental health problems and single sensory loss. For deafblind people, access to specialist deafblind support is also essential. Prior to 2001 many deafblind people received support aimed at people with a single sensory loss or a learning disability. They were often unable to benefit because the service failed to meet their dual sensory needs. In 2001 the Government introduced statutory guidance on services for deafblind people18 which required that people meeting the definition of deafblind should receive a specialist assessment and specialist services including where needed, one to one support such as a communicator guide or intervenor. Sense’s local authority survey shows a steady increase in the provision of communicator guide services in the years since the guidance came into force.19 We support the Commission’s aim to ensure promotion of well being and helping everyone to participate in the wider community. A fair approach to this will include the ability for deafblind people to access communication and mobility support. We also believe that what people get out of the system should not be linked to what they have paid in. Those who have never been able to work because of disability, or who have spent significant time as unpaid carers, should not lose out on entitlement to care and support as a result. The system must provide sufficient support to meet needs. If personal budgets are to be used then the budget must be sufficient to meet that need for that person. Post code lottery and fairness. It is widely perceived as unfair that a person in one part of the country should receive a different service from someone in another part of the country with broadly similar needs. Politicians may package this as “post code democracy” allowing local communities to decide on local priorities. Sense does not believe that the general population sees it this way. Generally social care is seen as similar to health care (in fact many people do not know the difference) and the idea that what you receive will depend on where you live is unacceptable. We also do not believe that such a system can work in a way that is fair. The number of people using social care services at any one time is a minority of the population. Although we are all likely to need some level of social care at some point in our lives, we are unlikely to pay close attention to the detail of local provision until we reach the point where we, or a member of our family requires support. This is unlike the health service, where most households will use at least their GP service reasonably frequently. Therefore social care will always be undervalued compared to other local services. Choice For deafblind people, lack of choice relates to two different issues – lack of funding and lack of services to purchase with that funding. The new system for assessing eligibility for support needs to recognise the full cost of sourcing specialist support for those with specialist needs. Most resource allocation systems in use by local authorities fail to address this issue. Giving people the money in the form of a direct payment does not necessarily deliver choice. Some people do not wish to or have the skills to manage their own budget. There is also the issue of there being any service on which to spend the budget. Having recognised the need for a communicator guide or other specialist service, there must be a suitable service available locally. There is a role for local authorities in ensuring there is sufficient service locally to meet needs. Value for money As outlined above we believe that encouragement to take up low levels of provision will represent value for money by preventing deterioration of a person’s condition. Any means testing should start only at higher levels of provision to encourage the take up of small packages. However, this requires additional funding. For those with low or no means and very high levels of need (such as people born deafblind) packages will inevitably be expensive and the system must retain sufficient money to meet these very high levels of need. The cost of failing to do so in terms of the quality of life of the individuals is so huge that we do not believe that the public would countenance such an approach. January 2011 For more information relating to this response contact: Sue Brown Sense 101 Pentonville Road, London N1 9LG 020 7014 9371 sue.brown@sense.org.uk 1 Robertson, J & Emerson, E (2010) Estimating the Number of People with Co-Occurring Vision and Hearing Impairments in the UK, Centre for Disability Research Report 2010:1 2 Emerson, E & Hatton, C (2008) Estimating Future Need for Adult Social Care Services for People with Learning Disabilities in England Centre for Disability Research Report 2008:6 3 Department of Health (2010), Prioritising need in the context of Putting People First: A whole system approach to eligibility for social care, Guidance on Eligibility Criteria for Adult Social Care, England 2010 4 Crews J.E., Campbell V.A., (2004), Vision impairment and hearing loss among community-dwelling older Americans: implications for health and functioning. American Journal of Public Health; 94 (5); 823-9 5 Gardner, M., Robertson, M., Campbell, A. (2000) - Exercise in preventing falls and fall-related injuries in older people: a review of randomised controlled trials. British Journal of Sports Medicine. Vol. 34, no. 1, pp. 7-17. 6 Hodges, L and Douglas, G (2007); - Hearing and sight loss: a review of the issues affecting older people. Occasional paper, no. 12. Thomas Pocklington Trust. 7 Surakka, A and Kivela, T (2008)– Motivating Visually Impaired and Deaf-blind People to Perform Regular Physical Exercises. British Journal of Visual impairment. Vol. 26, no. 3, pp. 268. 8 VICTAR, (2007), Secondary data analysis with a focus on the needs of older people with acquired hearing and sight loss: An analysis of the ‘Network 1000’ and ‘Cambridge’ datasets, 45 9 Nazroo, J and Zimdars, A (2010) - Social inclusion, social circumstances and the quality of life of visually impaired older people. Occasional Paper, no. 27. Thomas Pocklington Trust 10 Hodges, L and Douglas, G (2007) - Hearing and sight loss: a review of the issues affecting older people. Occasional paper, no. 12. Thomas Pocklington Trust 11 Heine, C. and Browning, C. (2004) – The communication and psychosocial perceptions of older adults with sensory loss: a qualitative study. Ageing and Society. Vol. 24, pp. 113–130. 12 Hodges, L. and Douglas, G. (2007) - Hearing and sight loss: a review of the issues affecting older people. Occasional paper, no. 12. Thomas Pocklington Trust. 13 Hodges, L. and Douglas, G. (2007) - Hearing and sight loss: a review of the issues affecting older people. Occasional paper, no. 12. Thomas Pocklington Trust. 14 Association of Directors of Social Services (2009) Common Resource Allocation Framework 15 CSCI, (2008) Cutting the Cake Fairly: CSCI review of eligibility criteria for social care 16 Department of Health & Ipsos MORI (2009) The case for change – Why England needs a new care and support system: Engagement findings 17 IPPR (2010) Capable Communities: Towards Citizen-Powered Public Services 18 Social Care for Deafblind Children and Adults, LAC(DH)(2009)6 (originally issued in 2001. Re-issued 2009.) 19 Sense (2011) Deafblind Guidance: Eight Years On, Sense Local Authority Survey Report, Adult Services, 2009-2010 ?? ?? ?? ??