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14 August 2014 Action on Hearing Loss Consultation Response to ‘Care Act 2014: How should local authorities deliver the care and support reforms?’ About us Action on Hearing Loss is the new name for RNID. We're the charity working for a world where hearing loss doesn't limit or label people, where tinnitus is silenced – and where people value and look after their hearing. Action on Hearing Loss provides information and support on all aspects of deafness, hearing loss and tinnitus. We also offer a range of care and support services across the UK, including running community-based hearing aid support and befriending services; Sensory Services on behalf of local authorities; and care and support services to people who are deaf, deafblind or who have a hearing loss alongside additional needs. Our response focuses on key evidence that relates to people with hearing loss and the people to whom we provide care. Throughout this response we use the term 'people with hearing loss' to refer to people with all levels of hearing loss and tinnitus, including people who are profoundly deaf. We are happy for the details of this response to be made public and we would also be happy to be contacted for more evidence and information. Table of Contents Page number Introduction 2 Response to the Wellbeing guidance 4 Response to the Prevention guidance 5 Response to the Information & Advice guidance 8 Response to the Market Shaping guidance 12 Response to the Assessment regulations and guidance 14 Response to the Eligibility regulations and guidance 15 Response to the Personal Budgets guidance 17 Response to the Person-centred planning guidance 18 Response to the Integration & Cooperation guidance 19 Response to the Delayed transfers of Care regulations 21 Response to the Prison/Bail Premises guidance 22 1 Introduction Action on Hearing Loss welcomes the opportunity to respond to this consultation from the Department of Health. As a member of the Care and Support Alliance, we have fed comments back to the Department of Health through the Care and Support Alliance engagement meetings and formal consultation response. Below we present the additional comments that we propose on behalf of the ten million people with hearing loss in the UK – one in six of the population. Prevalence of hearing loss increases with age, with 42% of people aged over 50 affected by hearing loss, rising to 71% of people aged over 70. Around 250,000 people in the UK’s care homes are affected1. As our population ages this number of people affected is set to grow. By 2032, there will be almost half a million people with hearing loss in the UK’s care homes2. If it is not managed effectively, hearing loss can cause communication difficulties and social isolation and often has a significant impact on an individual’s overall health, wellbeing and independence. There is also evidence of a link between hearing loss and dementia3, as well as extensive evidence that unaddressed hearing loss leads to mental health problems such as depression and anxiety4. This means that an individual is likely to require more intensive and costly care and support if their hearing loss is not addressed and effectively managed at an early stage. Local authorities play an important role in supporting people to address and effectively manage their hearing loss by assessing people’s needs, preventing and delaying the development of needs, providing advice and information, support and equipment, and signposting and referrals. Action on Hearing Loss broadly welcomes the proposed regulations and guidance to accompany the Care Act 2014. However, to ensure these reforms meet the needs of people with hearing loss, we suggest the following recommendations: 1. Whilst we agree that an understanding of local population need should be the basis for local strategies, many local authorities fail to recognise hearing loss in their JSNAs. Even if hearing loss is not specifically mentioned in the JSNA, local authorities must take account of the specific communication needs of people with hearing loss in their local strategies and commissioning. 1 Action on Hearing Loss Hearing Matters 2011 Action on Hearing Loss A World of Silence 2012 3 People with mild hearing loss are twice as likely to develop dementia than people without any hearing loss, and it increases to three times as likely for those with moderate hearing loss. Lin et al. (2011) Hearing loss and incident dementia. Archives of Neurology 68(2): 214-220 4 Saito et al (2010) Hearing handicap predicts the development of depressive symptoms after three years in older community-dwelling Japanese. Journal of the American Geriatrics Society 58, 1, 93-7; National Council on Aging (2000). The consequences of untreated hearing loss in older persons. Head and Neck Nursing, 18(1) 2 2 2. We believe that the national minimum eligibility threshold should be set at the equivalent of ‘moderate’ FACS, with sufficient funding for local authorities to meet their duties under the regulations. As a fundamental human right which has a huge impact on well-being and quality of life, the ability to communicate should also be included as a specified outcome in the eligibility criteria. 3. We strongly support the duties and guidance relating to improved accessibility of services. We recommend the inclusion of a list of example accessible formats to ensure that local authorities are able to act on this guidance. Contact details Christina Lowe, Research and Policy Officer Email: [email protected] 3 Response to the Wellbeing guidance 1.9 We welcome the recognition that everyone’s needs are different, and that local authorities will have to consider how to meet each person’s specific needs. The needs of each individual with hearing loss will vary, and it is vital that they are each given the opportunity to explain their communication needs and the support that they require to achieve improved outcomes in their health, wellbeing and independence. 1.13(a) We support the notion that local authorities should start from the assumption that an individual is best-placed to judge their own wellbeing. 1.22. We support the assertion that promoting wellbeing is not always about local authorities meeting needs directly. As a voluntary sector organisation, we run a number of services aimed at improving the wellbeing of people with hearing loss, for example befriending services, and services to provide people with practical support relating to their hearing aid maintenance. We encourage local authorities to work with the voluntary sector and to make arrangements to signpost people to these services as appropriate. 4 Response to the Prevention guidance It is very positive that the prevention duty extends to all people in a local authority’s area, including carers, regardless of whether they have needs for care and support. We welcome the encouragement to make the most of the resources available in the community – for instance, local support networks or voluntary services. We provide a great deal of information and community-based services that can play an important role in supporting people with the management of their hearing loss and other needs. We encourage local authorities to contact us for more information. 3. Is the description of prevention as primary, secondary or tertiary, a helpful illustration of who may benefit from preventative interventions, when and what those interventions may be? We appreciate the descriptions of prevention as primary, secondary or tertiary although these should not be taken by commissioners as indicating rank or importance. In relation to hearing loss, there are a number of prevention services that we encourage local authorities to consider. Prevent: primary prevention / promoting wellbeing As stated in paragraph 2.6, local authorities should encourage all residents to maintain an active and healthy lifestyle. Good hearing health is an important part of overall health and wellbeing, and local authorities should encourage people to look after their hearing. Noise-induced hearing loss is a preventable condition that can occur if an individual is regularly exposed to damaging levels of noise over long periods of time, at work or through personal listening habits. Exposure to noise has been shown to be associated with: increased levels of stress hormones in the blood; greater likelihood of cardiovascular disease; and increased risk of developing a mental illness, and cognitive impairments amongst children.5 To prevent noise-induced hearing loss, public health messages about the dangers of loud noise and ways to protect hearing should be shared, with a particular focus on targeting high-risk audiences such as young people, music fans and employees in loud work environments. Reduce: secondary prevention / early intervention Early intervention is essential for the effective management of hearing loss. Estimates suggest that at present only two million of the six million people that could benefit from hearing aids have accessed them, leaving an estimated four million people with unmet needs6. Research also shows that people wait on average ten years after noticing symptoms before they seek help for their hearing loss, and that 5 Ad Hoc Expert Group on Noise and Health (2010) Environmental noise and health in the UK. Health Protection Agency: Didcot 6 Action on Hearing Loss (2011). Hearing Matters. Available at: www.hearingloss.org.uk/hearingmatters 5 the average age of those referred for hearing assessment is in the mid-70s, by which point their ability to adapt and benefit from a hearing aid is greatly reduced 7. Unaddressed hearing loss can cause communication difficulties and social isolation and often has a significant impact on an individual’s overall health, wellbeing and independence. There is also evidence of a link between hearing loss and dementia 8, as well as extensive evidence that unaddressed hearing loss leads to mental health problems such as depression and anxiety.9 This means that an individual is likely to require more intensive and costly care and support if their hearing loss is not addressed and effectively managed at an early stage. It is therefore imperative that local health and social care organisations take action to encourage early intervention to support people to address and effectively manage hearing loss. Health and care professionals are in a beneficial position to encourage people who may have hearing loss to seek help at a point when they are receptive to advice about their health and wellbeing. Health and care professionals should have thorough training in recognising hearing loss and responding appropriately by referring individuals for a hearing test. Hearing checks or hearing screening should be incorporated into general health or wellbeing checks, as well as when patients are admitted or discharged from acute care or intermediate care. Individuals should be referred for a full hearing assessment (either directly, or via the GP) when staff recognise signs of hearing loss. Individuals who are referred to or present themselves to local authorities for other conditions that are closely associated with hearing loss should be encouraged to check their hearing and address any hearing loss. Common conditions that often cooccur with hearing loss include: dementia, cardiovascular disease, stroke, diabetes, mental health, Parkinson’s and sight loss. Please see our research report ‘Joining Up’ for more information10. Delay: tertiary Prevention People who have been diagnosed with hearing loss should be provided with the support they need to maximise their independence and skills. Examples of equipment, technology and additional services that can help people to more effectively manage their hearing loss and delay their need for more intensive support 7 Davis, A., Smith, P., Ferguson, M., Stephens, D., & Gianopoulos, I. (2007). Acceptability, benefit and costs of early screening for hearing disability: A study of potential screening tests and models. Health Technology Assessment, 11, 1–294 8 People with mild hearing loss are twice as likely to develop dementia than people without any hearing loss, and it increases to three times as likely for those with moderate hearing loss. Lin et al. (2011) Hearing loss and incident dementia. Archives of Neurology 68(2): 214-220 9 Saito et al (2010) Hearing handicap predicts the development of depressive symptoms after three years in older community-dwelling Japanese. Journal of the American Geriatrics Society 58, 1, 93-7; National Council on Aging (2000). The consequences of untreated hearing loss in older persons. Head and Neck Nursing, 18(1) 10 Action on Hearing Loss (2013) Joining Up: Why people with hearing loss or deafness would benefit from an integrated response to long-term conditions. Available at: www.hearingloss.org.uk/joiningup 6 include: the aids and adaptations peer support groups, hearing therapy and specialist counselling, and lipreading classes, available through local authorities or other local services. Local authorities must make a greater effort to signpost people with hearing loss to these support services. For example, at present many health and social care professionals are failing to provide people with hearing loss with information about local lipreading classes, despite the fact that lipreading classes are one of the best forms of reablement available to people with hearing loss. The benefits of these classes are outlined in our research report ‘Not Just Lip Service: Why it’s time to recognise the value of lipreading and managing hearing loss support’11. 11 Ringham (2013). Not Just Lip Service: Why it’s time to recognise the value of lipreading and managing hearing loss support. Available at: www.hearingloss.org.uk/lipreading 7 Response to the Information & Advice guidance Question 5: Views are invited about how local authorities should coordinate and target information to those who have specific health and care and support needs. As highlighted in the guidance (paragraph 3.3), local authorities must take an active role both in providing information and in ensuring that the information and advice provision in their area is coherent, sufficient and made available to the whole population. For people with hearing loss, local authorities can fulfil their duty to facilitate access to information and advice (paragraph 3.3) by making sure information is available in an accessible format and by ensuring that information is present in key locations where people with hearing loss are likely to access it. These include: deaf and hard of hearing groups, lipreading classes, audiology departments and community-based clinics, GP surgeries, hospitals, public libraries, Senior Citizens’ Forums, Age UK groups, town halls, and post offices. As identified in paragraph 3.15, there are people who have not presented to local authorities for assessment who are nevertheless likely to be in need of care and support, provided through local authority or otherwise. This is certainly the case with people with hearing loss; of the ten million people with hearing loss in the UK, four million people could benefit from hearing aids, support or equipment but have yet to acknowledge or address their condition. This failure to effectively manage their impairment may in some cases have a significant impact on their safety, independence and wellbeing. Local authorities should play an active role in encouraging these people to address and manage their hearing loss. We welcome the recommendation in paragraph 3.4 for local authorities to provide information and advice about prevention of care and support needs, finances, health, housing, employment, cases of abuse or neglect, and other areas, in addition to basic information about care and support. In relation to hearing loss, this includes providing information about: - - - Treatment and rehabilitation for hearing loss e.g. having a hearing assessment, getting and using hearing aids, requesting support services that may be available through the local authority, such as lipreading classes, counselling or hearing therapy Products and equipment that can support an individual to adapt to their hearing loss, including the aids and adaptations that may be available through a local authority’s sensory services –e.g. a hearing loop system, a textphone, a vibrating alarm clock, a telephone amplifier, devices that use flashing lights and/or vibrating pads to alert when a doorbell, telephone or smoke alarm is ringing Benefits that may be appropriate to support a person with hearing loss e.g. Personal Independence Payments / the Disability Living Allowance; the Employment and Support Allowance; Attendance Allowance; the Industrial 8 - Injuries Disablement Benefit; Carer’s Allowance; the Community Care Grants from the Social Fund; Armed Forces Compensation Scheme Support in a workplace or educational setting e.g. Access to Work or Disabled Students’ Allowances Discounted travel available for people with hearing loss As stated in paragraph 3.15, this information should be provided both to people with care and support needs themselves, and to their family and carers. Our research has found that the family and friends of people with hearing loss can play a central role in determining how effectively an individual is able to manage their condition12. It is therefore important that local authorities provide family and carers with the information that they require to support the person with hearing loss. In order for local authorities to coordinate information for people with specific health and care needs, it is essential that the local authority engages with people with hearing loss, the people who surround them, the wider public and local providers of information and advice for people with hearing loss (paragraph 3.12). We welcome the requirement in paragraph 3.13 for local authorities to understand, coordinate and make effective use of other statutory, voluntary and/or private information and advice resources. As a voluntary organisation that provides information and advice to people with hearing loss on a national and local level, we are keen to ensure that this service is well coordinated and makes best use of the available knowledge and resources. We support the requirement for local authorities to ensure there is an accessible information and advice service that meets the needs of its population, including people with sensory impairments (paragraph 3.17 and 3.20). Some local authorities may be unsure about what ‘accessible formats’ means for people with particular disabilities. We therefore recommend that the guidance is amended to include examples of accessible formats. Examples of accessible formats that people with hearing loss may require include: - Textphones Text Relay SMS Text Instant messaging Video Relay Written material in plain English Videos with subtitles and BSL interpretation BSL translation of key written information Communicating through a live or remote communication support professional, for example a BSL interpreter, lipspeaker, notetaker or speech to text reporter Communicating with the support of equipment such as a personal listener or a hearing loop system 12 Echalier (2010). In it together: the impact of hearing loss on personal relationships. Available at: www.hearingloss.org.uk/supporting-you/policy-research-and-influencing/research/our-researchreports/research-reports-2010.aspx 9 We are happy to be contacted for further guidance about accessibility. We welcome the reference to local authorities’ duty under the Equality Act to make reasonable adjustments to ensure disabled people have equal access to their services. It is also positive that the guidance signposts local authorities to NHS England’s forthcoming Accessible Information Standard (ISB 1605). This standard will provide extensive guidance to support local authorities to identify, record, share and meet the needs of people with hearing loss, sight loss and learning disabilities. Following the standard’s guidance will enable local authorities to fulfil their duty in the Care Act regulations to pay due regard to the needs of people with sensory impairments and learning disabilities. We suggest the following amendments to paragraph 3.19 of the guidance in order to ensure people with hearing loss are not excluded: Information and advice channels are likely to include all of the following: - Face-to-face contact, with communication support if necessary - Telephone and textphone Whilst it is vital that all non-verbal information is provided in an accessible format, it is also essential that staff providing verbal information are fully trained in the communication needs of people with particular communication requirements, including people with hearing loss. Deaf awareness training can provide staff with information about Text Relay and loop systems; best practice for working with Communication Support Professionals; basic sign language and communication tactics. The importance of regular deaf awareness training for all frontline staff should not be underestimated. We therefore fully support the recommendation for all frontline staff to be aware of accessibility issues and appropriately trained (paragraph 3.28). We strongly support the duty in paragraph 3.29 for local authorities to ensure that all relevant information is available to people for them to make the best informed decision in their particular circumstances. It is essential that local authorities take a proactive role in this regard; many people with hearing loss will not know what information to request in an accessible format without guidance from the local authority about what information could be made available. In paragraph 3.49, the guidance sets out the requirement for local authorities to provide information and advice on local arrangements for receiving and dealing with complaints and what support is available to people to enable them to complain. Requirements relating to the provision of information in accessible formats also apply to complaints procedures, and local authorities must take care to ensure that people with particular communication needs are provided with accessible information and communication support to explain complaints procedures and to enable them to complain. 10 We welcome the recommendation for local authorities to engage all relevant stakeholders in the development of information and advice plans and implementation (paragraph 3.55). Active steps must be taken to ensure that people with hearing loss are able to take part in the engagement process. With regards to a local authority’s duty to work with local CCGS and other partners to undertake JSNA and JHWS (paragraph 3.53), it is vital that the JSNA truly reflects the diverse range of needs of the local population. Our 2013 research found a worrying lack of recognition of the high prevalence and significant impacts of hearing loss in local authorities’ population data and plans13. In England, only one-third of directors of Adult Social Services said that hearing loss appears as a specific issue in their JSNA, and only half of Adult Social Services have a sensory or hearing loss loss strategy. Hearing loss affects one in six people and tinnitus affects one in ten people; both conditions can have a significant impact on their health and wellbeing. Local Authorities must ensure that these common conditions are reflected in their data and analyses relating to local population needs. This will then result in an improved ability to make accurate and effective local strategies and plans for “what health and social care information the community needs, including how they access it and what support they may need to understand it”. Given the lack of analysis of the prevalence and impacts of hearing loss in many JSNAs, we are concerned by the encouragement in paragraph 3.56 for local authorities to look to JSNAs to identify the factors to consider for the provision of their information and advice service. It is therefore vital that every local authority takes into account the specific communication needs of people with hearing loss, regardless of whether or not these needs have been accurately represented in their local JSNA. We welcome the recommendation in paragraph 3.57 for local authorities to review and publish information about the effectiveness of their information and advice service. As a large user group with specific communication needs, we encourage local authorities to seek feedback from people with hearing loss during this review process. As the largest national charity providing information and support for people with hearing loss, the guidance should signpost people to the website and resources of Action on Hearing Loss: www.actiononhearingloss.org.uk in the list of relevant links. 13 Calton (2013) Life Support: The provision of social care for people with hearing loss. Available at: www.hearingloss.org.uk/lifesupport 11 Response to the Market Shaping guidance Question 8: Are there any further suggestions of case studies or tools that can assist local authorities in carrying out their market shaping and commissioning activities? There are several tools that can assist local authorities in identifying the number of people with sensory loss in their local area, which will then enable them to effectively carry out their market shaping and commissioning activities for this group. For sight loss, RNIB has developed a data tool for local authorities, available at: http://www.rnib.org.uk/knowledge-and-research-hub-key-information-andstatistics/sight-loss-data-tool . Action on Hearing Loss is also developing a tool to support local authorities with data about people with hearing loss. In the meantime we can provide local data templates and guidance about the number of people in a particular local area with hearing loss. We would strongly encourage local authorities to contact us for this information and advice. 4.2 We support the requirement for local authorities to facilitate and shape their market for adult care and support as a whole, so that it meets the needs of all people in their area who need care and support. One of the most common conditions affecting adults with care and support needs is hearing loss; this affects more than three-quarters of mainstream care users. It is therefore essential that local authorities ensure that the market in their area meets the communication and care needs of people with hearing loss. 4.22. When arranging services themselves, local authorities must ensure their commissioning practices and the services delivered on their behalf comply with the requirements of the Equality Act 2010, and do not discriminate against people with protected characteristics. Within the category of ‘disability’, hearing loss is one of the protected characteristics under the Equality Act. Local authorities must ensure that services in their area make reasonable adjustments to support people with hearing loss, including people who are hard of hearing and those who are profoundly deaf and use British Sign Language as their first language. 4.40. We welcome the encouragement for local authorities to consider the sufficiency and diversity of all types of service, including specialist care. People who are deaf and have other conditions have complex needs and must be able to access specialist care services. Local authorities must ensure that these needs are identified within their strategies and that this results in referrals to appropriate specialist care. At present, the NHS recognises the complexity of needs of people who have mental ill health alongside substance misuse problems. Dual diagnosis in these cases ensures that these people are referred to the specialist care that they require. However, in the case of those who are deaf and have other conditions, local 12 authorities often fail to recognise the complexity of their dual needs- this has resulted in inappropriate referral to generic care and support services, rather than the necessary specialist services that they require. 4.48. Given that the market shaping and commissioning intentions will be crossreferenced to the JSNA, it is vital that the JSNA truly reflects the diverse range of needs of the local population. Our ‘Life Support’ research found a worrying lack of recognition of hearing loss in local authority’s population data14. In England, only one-third of directors of Adult Social Services said that hearing loss appears as a specific issue in their JSNA, and only half of Adult Social Services have a sensory loss strategy. Hearing loss affects one in six people and tinnitus affects one in ten people; both conditions can have a significant impact on their health and wellbeing. Local Authorities must ensure that these common conditions are reflected in their analyses and strategies relating to local population needs. 4.57 We support the impetus for local authorities to arrange engagement with hardto-reach individuals and groups, including those who face communication difficulties. We suggest that the text is amended from ‘who have communication issues’ to ‘who face communication difficulties’. 4.66. We welcome the recognition of the services and support provided by the voluntary sector and the encouragement for local authorities to plan strategically to encourage, make best use of and grow these essential activities to integrate them with formal care and support services. To continue to grow their ‘community assets’, commissioners must ensure that people with disabilities are able to contribute and develop their many and diverse skills. There is currently no access to communication support funding for volunteers. This is socially excluding and has meant that people who are deaf are barred from being part of ‘Big Society’ unless they can afford to fund their own support. Volunteers have a large role to play in the delivery of care & support and apprenticeships from volunteering may lead to employment in the sector. People who have hearing loss must be given appropriate support so that they can volunteer. 14 Calton (2013) Life Support: The provision of social care for people with hearing loss. Available at: www.hearingloss.org.uk/lifesupport 13 Response to the Assessment regulations and guidance Regulations 3(1) We welcome the requirement for a local authority to carry out an assessment in a manner which is appropriate and proportionate to the needs and circumstances of the individual to whom it relates; and having regard to the importance of ensuring that the individual is able to participate in the process as effectively as possible. People with hearing loss have specific needs that must be taken into account in order for them to participate effectively in the assessment process, for example access to communication support such as a fully qualified British Sign Language (BSL) interpreter, or equipment such as a personal listener. Our ‘Life Support’ research surveyed local authorities in England and Wales15. The research found that when a BSL user needs information or an assessment, in some cases a team member trained to interpreter level (level 6) in BSL is available. But in the majority of cases the service is delivered by an underqualified interpreter, either a member of the team with no formal BSL training or up to level 3 BSL, or a friend or family member. Better processes must be introduced to book proper communication support where it is needed. 3(5) We welcome the requirement for local authorities to provide information prior to the assessment in a format which is accessible to the individual. People with hearing loss may require information in particular formats. For example, for some British Sign Language users English may be a second language and therefore all written information should use plain English and key information should be provided with a BSL translation. Guidance 6.3 We support the emphasis on prevention and early intervention, and the recognition that the outcome of an assessment may range from offering guidance and information to arranging for services to meet those needs. Many people with hearing loss have not yet taken action to address the condition. Health and social care professionals must make the most of appropriate opportunities to support people with hearing loss to acknowledge and effectively manage their condition. 6.5 It is essential that assessors are appropriately trained to work with people with hearing loss. Ten million people in the UK have hearing loss and many of them will require assessments for this or other conditions; this includes people who are hard of hearing as well as people who are severely or profoundly deaf, some of whom use British Sign Language as a first language. Proper deaf awareness training and regular refresher sessions are required to ensure assessors understand and respond 15 Calton (2013) Life Support: The provision of social care for people with hearing loss. Available at: www.hearingloss.org.uk/lifesupport 14 appropriately to the communication needs of people with different levels of hearing loss. 6.36. We welcome the encouragement for local authorities to establish the individual’s communication needs and seek to adapt the assessment process accordingly. These adjustments are vital to enable people with hearing loss to participate fully in the assessment process. As mentioned above, better processes must be introduced to book qualified communication support for people with hearing loss where it is needed. Our 2013 survey of local authorities in England and Wales found that in the majority of cases when BSL users need information or an assessment they are not given a qualified interpreter, instead having to rely on a member of the team with no formal BSL training or up to level 3 in BSL, or sometimes a friend or family member who interprets on behalf of the client16. Response to the Eligibility regulations and guidance Question 14: Do the draft eligibility regulations, together with powers to meet other needs at local discretion, describe the national eligibility threshold at a level that will allow local authorities to maintain their existing level of access to care and support in April 2015? If you believe they don’t please explain your reasons for this. As part of the Care and Support Alliance (CSA), we are fully supportive of the points raised in the CSA’s response to the eligibility regulations and guidance. The following points are of particular importance to people with hearing loss: We understand that the Government’s intention is for regulations to set the national minimum eligibility threshold at the equivalent of ‘substantial’ Fair Access to Care Services (FACS), the level currently adopted by the majority of councils. In our view, this threshold is too high and will exclude carers, older and disabled people from essential support. We believe that the threshold should be set at the equivalent of ‘moderate’ FACS, with sufficient funding for local authorities to meet their duties under the regulations. In relation to adults, we believe that the proposed regulations represent a tightening of the current ‘substantial’ level of care, due to the conditions set out in Clause 2 of the regulations. We know that many people with hearing loss are currently unable to access the care and support they require due to high local eligibility thresholds. We fear that the new criteria will continue to exclude many people who require care and support. 16 Calton (2013) Life Support: The provision of social care for people with hearing loss. Available at: www.hearingloss.org.uk/lifesupport 15 Omissions from the current criteria Communication As the regulations are currently drafted, a person’s communication needs may only be considered eligible if they relate to one of the other specified outcomes – for example if a person is not able to access necessary facilities or services in the community because they are not able to communicate. However, we believe that the ability to communicate and make oneself understood is a fundamental human right which has a huge impact on well-being and quality of life and must be included as a specified outcome in its own right. CSA members are aware of people in different circumstances who need support but may not be eligible for it. Clause 2 (2) Specified outcomes Clause 2 (2) (3) 3 (4) (b) (i) basic care activities ‘Some or all’ The meaning of this phrase is currently unclear and we are concerned that leaving it solely to local authority interpretation could result in variations in eligibility and subsequent care packages. This undermines the aim of a national threshold to improve equity and consistency across the country. The change from ‘one or more’ in the draft regulations published in June and the ‘some or all’ in the current draft represents a considerable tightening of the eligibility criteria. Question 18: Does the guidance adequately describe what local authorities should take into consideration during the assessment and eligibility process? Unlike other chapters of guidance, this guidance does not currently state that the record of a decision about eligible needs must be provided in a format that is accessible to the person who has been assessed. We strongly suggest that an amendment be made to stipulate this requirement. This will ensure that people with hearing loss are able to understand and take part in their assessment of care and support needs. 16 Response to the Personal Budgets guidance 11.22 We encourage local authorities to adopt suitable systems for resource allocation to ensure that the personal budget is an appropriate amount to meet an individual’s care and support needs. As stated in the guidance, the particular needs of some people with hearing loss are comparatively costly to meet and a one-sizefits-all approach to resource allocation would discriminate against these clients and other similar client groups. Resource allocation systems often fail to meet the needs of people with hearing loss; our 2013 research found that the resource allocation systems of fewer than half of Adult Social Services in England allocate points for communication support needs, meaning that people with hearing loss may not have their communication needs met17. 11.23 It is positive to see that the personal budget will be adjusted if care and support turns out to be more costly than anticipated at the start of the care and support planning process. 17 Calton (2013) Life Support: The provision of social care for people with hearing loss. Available at: www.hearingloss.org.uk/lifesupport 17 Response to the Person-centred planning guidance We strongly support the concept of active involvement of the person throughout the process of planning their care. For people with hearing loss to be actively involved and engaged, they must be provided with information in accessible formats and appropriate communication support must be provided. We have worked with Helen Sanderson Associates to develop a number of tools for person-centred care and care planning18. We encourage local authorities to contact us for more information. The guidance says that it may be useful to put a review date into the care plan, but it does not say that the local authority should do this. We believe that the guidance should be amended to ensure that local authorities put review dates on the plan so that care and support plans are reviewed on a regular basis. 18 More information is available on our website at: http://www.actiononhearingloss.org.uk/supportingyou/care-and-support/person-centred-working/person-centred-tools/person-centred-thinking-to-supportpeople-who-use-bsl/sorting-important-to-and-for.aspx 18 Response to the Integration & Cooperation guidance Question 48: Are there any ways that the guidance can better support cooperation locally? 15.22 Local authorities’ duty to cooperate with the voluntary sector as a partner should be explicitly stated in this guidance. 15.9. During the development of their JSNA and JHWS, local authorities should cooperate with the voluntary sector to understand the needs of particular groups, particularly hard-to-reach populations. 15.37 People with hearing loss are particularly vulnerable to the problems resulting from lack of integration between health and social care services given the need for their communication needs to be recorded, understood, shared and met by all staff and services that they come into contact with. Lack of integration can result in communication barriers that can hinder their access to information and communication with staff, their understanding of their condition(s), and their ability to maintain choice and control. Improving the management of hearing loss, the provision of information and cross-referrals, and the accessibility of services, will reduce the problems with transition between health and care settings. This will ultimately save money and allow people with hearing loss to live healthy, independent lives. Our 2013 research report gives examples of how proper diagnosis and management of hearing loss can reduce or delay the time spent in acute care, and improve the effectiveness of rehabilitation19. In particular, BSL users need culturally sensitive provision of care and particular interventions and transition planning to ensure they can communicate effectively and are not excluded or neglected during the transition between care services. These include the proper provision of communication support such as BSL interpreters, and access to specialist diagnostic and management tools – interventions that are not usually available in mainstream care but which are essential for this group. 15.72 We welcome the inclusion of information and advice on housing, adaptations to the current home, and alternative housing options services as part of the overall service of information and advice that should be made available to residents. Our research found that many people with hearing loss are not informed about the adaptions that could be made to their housing to maximize their independence, safety and wellbeing, for example the fitting of flashing smoke alarms and doorbells and amplified telephones20. 19 Action on Hearing Loss (2013) Joining Up: Why people with hearing loss or deafness would benefit from an integrated response to long-term conditions. Available at: www.hearingloss.org.uk/joiningup 20 RNID (2008). Annual Survey Report. Available at www.hearingloss.org.uk/supporting-you/policy-researchand-influencing/research/annual-survey-of-members/annual-survey-2008 19 15.78 It is positive to see that the information and advice available to the local population should include information and advice on eligibility and applying for disability benefits and other types of benefits and, on the availability of employment support for disabled adults. Many people with hearing loss are not made aware of the employment support that they may be eligible for, and in some cases this prevents people from taking on or continuing work which would incur communication support costs. Question 56: Are there any good practice examples of local authorities working with their partners, including health, education, employment and housing? As mentioned above, we are concerned by the lack of strategies addressing the high prevalence and significant impacts of hearing loss in local populations. Local authorities should work with local health partners and the local voluntary sector to collate comprehensive data and produce a strategic response to the needs of the local population. An example of effective joint working to produce a detailed hearing loss strategy can be found at: http://www.toonhearing.org.uk/files/Hartlepool-FinalReport.pdf This strategy was jointly commissioned by the Hartlepool Borough Council and Hartlepool PCT, and summarises interviews with a range of people working across the health and social care sectors in Hartlepool, the collation of information from the Council’s registers and the PCT’s commissioning team, along with a review of published literature. 20 Response to the Delayed transfers of Care regulations Patients must have access to communication support when being assessed. Based on our experience, delays arranging communication support have led to unnecessary delays in transfers of care. It is therefore important that the ‘assessment notice’ (Paragraph 1(1) of Schedule 3) indicates if a patient has specific communication needs including a need for other language support. Similarly the carer’s assessment should also include identification of communication support needs. The ‘discharge notice’ (Paragraph 2(1)(b) of Schedule 3) should also identify communication support needs, as well as identifying a need for referral for a hearing assessment or aftercare support for patients with a hearing loss who are not managing the condition well. Please also refer to our response to the ‘Integration & Cooperation’ guidance. 21 Response to the Prison/Bail Premises guidance Question 59: We would welcome views and transferable good practice examples about the application of care and support to custodial settings, in particular about information and advice, advocacy, financial assessment, personal budgets and joint commissioning arrangements between custodial establishments, local authorities and health services. Adults in prison must not be excluded from information, prevention and care and support services. Due to the ageing population, prevalence of hearing loss and tinnitus is increasing in prisons and as stated in 17.1, failure to acknowledge and address this area of need can have a significant impact on people’s health and wellbeing as well as their longer term rehabilitation. People in or entering prison should be supported to address and effectively manage their hearing loss. Early intervention could delay the need for more intensive care and support in prisons: - Hearing screening should be carried out, for example by including a hearing check within the routine health assessments for those entering custody and in prison Hearing aids should be fitted for those who need them. Access to aftercare and rehabilitation services (such as lipreading support) should also be provided. Loops and other equipment that enable people with hearing loss to communicate should be made available in prisons It is also vital that those who receive needs assessments while in prison have access to communication support during the assessment to ensure that they are able to communicate effectively during this process. Advocacy support in prison should also consider the needs of people with hearing loss, in particular their need to access communication support in order for them to communicate their views and understand discussions about their circumstances. 22