Disability Living Allowance reform: a response from Sense February 2011 Sense With over 50 years of experience, Sense is the leading national charity working with, and campaigning for, children and adults who are deafblind. Sense provides expert advice, support, information and services for deafblind people, their families and professionals. Deafblindness Deafblindness is a combination of both sight and hearing difficulties. The complex impact of dual sensory loss means that it is a unique disability. Deafblind people need support with communication, access to information and mobility. Based on independent research, there are an estimated 365,000 deafblind people in the UK.1 Summary Sense firmly believes that the Government should continue to provide a cash benefit which will contribute to the extra costs faced by disabled people to lead full and active lives. We are also keen to improve the DLA system for deafblind people; in 2009, in coalition with the Disability Alliance and other organisations, we called for improvements to DLA to improve the system.2 Despite legislative progress in tackling some of the barriers for disabled people, deafblind people still face barriers on a daily basis that incur additional costs; it is therefore vital that the Personal Independence Payment (PIP) recognises this. The consultation does not include any reference to the Government’s decision to severely cut future expenditure of DLA/PIP. No evidence has been produced to justify the specifics of this decision. It must also be highlighted that levels of fraud are low with ‘official error’ being a higher cause of inaccuracy.3 The estimated costs for the delivery of the proposed assessment process must be published as soon as possible during the passage of the Welfare Reform Bill. Our key points in response to the consultation are: • Cutting the expenditure on DLA is not justified and will leave those with ‘lower level’ needs with little or no other support, thereby, cutting them off from society and increasing the risk of their developing higher level health and social care needs. • The automatic entitlement for deafblind people to the higher rate mobility component should be retained as part of PIP as it is both an effective way to ensure PIP support reaches the right people and is an efficient use of resources. • The current DLA mobility component must continue to be paid to people who live in local authority funded residential care. The Government has not provided adequate justification for this decision. Individuals’ mobility needs will be left unmet if this is removed. • When establishing criteria for the assessment, it is vital to understand how combined sight and hearing impairments limit a person’s ability to adapt to and manage individual sensory impairments, thereby multiplying the effect and leading to a unique disability. • Barriers and additional costs related to being able to get out of the house must be included in the essential daily activities covered by PIP. • We welcome the suggestion that has been made by the Minister and officials that communication should be taken into account more as part of the assessment for PIP. Deafblind people face barriers related to communication that impact on their independence and participation. • If the Government increases the number of face-to-face assessments for deafblind people, it will be essential to ensure assessors and decision makers fully understand the impact of deafblindness. It will be vital to give due weight to evidence from medical and social care specialists in deafblindness. If this is not implemented correctly, there will be a significant number of unnecessary and costly appeals. • Any face-to-face assessment must be accessible to deafblind people. The right kind of mobility and communication support must be provided to minimise stress for individuals and prevent wasted resources. • If DLA awards for people over 65 are also reviewed, assessors and decision makers must be fully aware of the mobility needs of deafblind older people. Consultation questions We have responded to the questions where we have particular concerns about ensuring PIP meets the needs of deafblind people. 1. What are the problems or barriers that prevent disabled people participating in society and leading independent, full and active lives? People who are deafblind face barriers of communication, mobility and access to information which can have an impact across all everyday activities. If deafblind people do not receive support with mobility needs, they can remain trapped in their own homes cut off from society. 2. Is there anything else about Disability Living Allowance (DLA) that should stay the same? DLA mobility component for people living in local authority funded residential care and residential schools (during term time) The Government should reverse the decision to remove the DLA mobility component from people in local authority funded residential care and residential school (during term-time). The Government has presented a range of shifting and unclear arguments to justify this decision. Here we tackle key arguments put forward by the Government. • The original justification was that this decision would align the rules around DLA for people living with hospital. This was based on a total misunderstanding of the nature of residential care. Individuals living in care homes are not ill and expect to be independently mobile and participate fully in society. • Another argument is that mobility needs are double-funded by local authorities and DLA mobility. However, evidence collected by a number of organisations does not support the Government’s justification that mobility support is double-funded.4 Local authorities only meet residents’ assessed needs using the local thresholds within the national eligibility framework. In the majority of areas, local authorities only meet ‘substantial’ and ‘critical’ needs. Currently, local authorities are proposing to move to meeting critical needs only, with Birmingham City Council proposing to meet critical personal care needs only. Local authorities may fund visits to medical appointments and day services (where this is part of the package), but the scope is limited. And even if some basic mobility needs are picked up within assessed needs, needs which fall below eligibility thresholds are can be partly met by DLA mobility. • More recently it has been stated that meeting mobility needs falls within the registration requirement for care homes to “so far as reasonably practicable, make suitable arrangements to ensure…the dignity, privacy and independence of service users." We believe this does not include meeting additional mobility costs for which the DLA mobility component is paid. Legislation and guidance do not make any specific reference to mobility and/or transport needs. Local authorities have no specific statutory duty to meet such costs and in the present financial circumstances it is very unrealistic to suppose that they would be generally likely to do so. • It has been suggested that individuals in residential care settings could make more use of community transport schemes such as Dial-a-Ride. Given the nature of the Dial-a-Ride scheme, there is no way that this system which requires booking a slot in advance could replicate the flexibility and independence when using the DLA mobility component. While Dial-a-Ride services play an important role, reliance on a service like this, seems to go against the promotion of independent mobility. Some deafblind people use specialist communication methods that Dial-a-Ride drivers are unable to use and some individuals require very specific adaptations to vehicles in order to travel safely, so this scheme is not be accessible or safe for them. This is a regressive step which will deny 80,000 people their independence and limit their participation in community life. This undermines the Government’s commitment to promoting social inclusion and independent living for disabled people. This would seriously increase the risk of social exclusion and indeed isolation for disabled people living in residential care. Automatic entitlement to higher right mobility for deafblind people This should remain. Please see our response to question 5 3. What are the main extra costs that disabled people face? Deafblind people face both very significant ongoing and one-off additional costs related to their disability. These costs are not met by social care services. These additional costs are extremely varied, examples include: • Online shopping when it is not possible to go to the shop: £100 p.a. • Paying for interpreters: £25 - £35 p.h. • Braille display for computer: £3,000 - £7,000 • Braille notetaker: £4,500+ • Screen reader software: £500 - £900 • Screen reader software updates: £200 - £500 • Braille textphone software: £300+ • Repair of specialist equipment: up to £2,000 4. The new benefit will have two rates for each component: • Will having two rates per component make the benefit easier to understand and administer, while ensuring appropriate levels of support? • What, if any, disadvantages or problems could having two rates per component cause? If this means that an equivalent to lower rate care will cease to exist as part of the daily living component, it will lead to a lack of preventative support. This will have a significant impact on individuals’ physical and mental wellbeing and increased pressure on health and social care services when unmet low level needs develop into higher needs. Also, having three different levels of support can ensure a greater degree of sensitivity to individual circumstance. 5. Should some health conditions or impairments mean an automatic entitlement to the benefit, or should all claims be based on the needs and circumstances of the individual applying? Automatic entitlement to higher rate mobility should remain for deafblind people and people with severe visual impairment. We are concerned that an assessment by a non-specialist is often inaccurate or clear medical evidence is misinterpreted. Therefore, automatic entitlement based on clear mobility needs is effective, accurate, objective, administratively simple, cost effective and easy for claimants to understand. At a time of significant reductions in public expenditure, we do not understand the reasoning behind assessing individuals on a face-to-face basis when they have an obvious need for PIP. In additional to this we believe that having automatic entitlements for some groups does not exclude others with equivalent levels of need receiving the same amount of PIP support. 6. How do we prioritise support to those people least able to live full and active lives? Which activities are most essential for everyday life? Sight and hearing are key to all day-to-day activities. Problems with communication affect participation and interaction and almost every activity for daily living is made more difficult by dual sensory loss, such as managing health and hygiene, bathing and dressing, selecting clothes and checking appearance, preparing meals, cooking, shopping, moving around indoors and outdoors, communicating with others, accessing written communications, following instructions, awareness of hazard and risk of injury and participating in social activities. Being able to get out of the house and communicate effectively with others must be included in the essential daily activities covered by PIP. Therefore the system of assessment should allow for consideration of the effects of deafblindness on all activities relevant to the component being assessed. We welcome that Ministers and officials are looking at how barriers and additional costs related to communication could be recognised in the assessment for PIP. It also raises a wider question as to how issues of communication are dealt with in seeking to reflect the extra costs of disability. We believe that there is a strong case for a third component of communication within PIP. We would be very happy to discuss in detail with the DWP how such a component might work. 7. How can we best ensure that the new assessment appropriately takes account of variable and fluctuating conditions? It is also essential to take into account that the impact of sensory impairment on individuals will be very different depending on their location and activity they are engaging in. For example, people may manage well when indoors in good light in a familiar environment but may have difficulty when outdoors, in an unfamiliar environment or during the evening or night-time. To ensure the system is meeting individuals’ needs and promoting participation, the assessment must proactively take account of these issues as they will not be apparent in a face to face interview, especially when conducted in someone’s own home. 8. Should the assessment of a disabled person’s ability take into account any aids and adaptations they use? Aids and adaptations should be regarded as complementary to benefit entitlements, not in competition with them. Aids for deafblind people such as long canes and hearing aids are just one part of successful mobility and communication; they work in conjunction, for example, with any human support or transport. Individuals often have to pay for aids and adaptations themselves. Therefore these individuals have an ongoing additional cost related to disability, despite successfully using aids and adaptations. 9. How could we improve the process of applying for the benefit for individuals and make it a more positive experience? For example: • How could we make the claim form easier to fill in? • How can we improve information about the new benefit so that people are clear about what it is for and who is likely to qualify? Clear, plain English forms should be provided in individuals’ preferred formats (for example large print, Braille, audio, electronic format or different coloured paper). Help should also be proactively offered by the Department and its partners to those who have difficulty in filling in forms because of their disability. Publicity around the introduction of PIP should also seek to counter myths that the benefit is an out-of-work benefit only or that it is means-tested. 10. What supporting evidence will help provide a clear assessment of ability and who is best placed to provide this? Mainstream healthcare professionals have very limited knowledge of the impact of dual sensory impairment on daily living. It will therefore be essential to allow for adequate time given to submit and take account of evidence submitted by relevant specialists. Social care specialists in deafblindness will also be key contacts for evidence gathering on the impact of deafblindness. Only then will the Decision Maker be able to make the most informed decision and avoid allocating the wrong awards and placing unnecessary pressure on the reconsideration and appeals process. 11. An important part of the new process is likely to be a face-to-face discussion with a healthcare professional. What benefits or difficulties might this bring? As stated above, the unique impact of dual sensory impairment is poorly understood by mainstream healthcare professionals. Existing experience of Employment and Support Allowance assessments does not provide good experience of medical services understanding specific evidence and applying it to likely functional needs. While we have been assured that the assessment could be very different to the current Work Capability Assessment (WCA), the PIP assessment criteria and implementation of the assessment must learn the lessons from the WCA and Professor Harrington’s ongoing work reviewing this. The role of the Decision Maker will be key in ensuring that PIP is received by those who need it and in avoiding unnecessary stress for individuals and appeals. Poor decision-making is in itself undesirable, but it also tends to generate large numbers of appeals, a high proportion of which will be successful - again, an unproductive use of administrative resources. It will be essential to avoid the much-criticised and simplistic points-based assessments that have led to so many questionable decisions in the WCA process. Clear guidance should also be provided to assessors. When establishing criteria for the assessment, it is vital to understand how combined sight and hearing impairments limit a person’s ability to adapt to and manage individual sensory impairments, thereby multiplying the effect and leading to a unique disability. For example: • For individuals with a visual impairment, a hearing loss often affects mobility. This may be because they are unable to use their hearing to navigate or because their balance is affected by the hearing loss; • Hearing loss can make it harder to recognise someone by voice when sight is also impaired; • Co-existing visual impairments can make it harder for people with hearing loss to understand someone, for example through lip-reading, body language, gesture or sign language. Assessors and those arranging assessments will need to be aware of the impact of dual sensory impairment and how to appropriately communicate with individuals, including providing accessible information, guiding support during assessments and communication support such as the right sort of interpreters where appropriate (for example deafblind manual rather than BSL interpreters will be required for some deafblind people). Given the Government’s priority to reduce public expenditure, the cost of providing an accessible face-to-face assessment must be weighed against the need for such an assessment. As stated earlier deafblind people inevitably face barriers and additional costs related to mobility and daily living and should meet DLA and PIP criteria for support. It seems highly inappropriate to conduct a face-to-face assessment if there is no justification for this expenditure. • Are there any circumstances in which it may be inappropriate to require a face-to-face meeting with a healthcare professional – either in an individual’s own home or another location? Some deafblind people will be unable to leave their home without a guide and are unable to communicate effectively with taxi drivers. It would therefore be unreasonable to expect these individuals to attend the assessment without providing guiding support to and from the home. Individuals should not be required to rely on family members, friends or social care support which they receive to meet other assessed social care needs. 12. How should the reviews be carried out? For example: • What evidence and/or criteria should be used to set the frequency of reviews? • Should there be different types of review depending on the needs of the individual and their impairment/condition? It is likely that if appropriate action is not taken, the face-to-face assessment process will be stressful for many deafblind people. Any review process must be sensitive to the fact that deafblind people’s sensory impairments will either be stable or increasing. In other contexts, deafblind people can be asked if they ‘have got better’ which is both highly distressing and ignorant. Given this situation, any review process must be proportionate to the likelihood of changed needs. For example, a deafblind person who receives the higher rate of either of the components is highly likely to remain in need of those given the ongoing barriers a deafblind person faces. We therefore do not see a case for reviewing their award with a face to face assessment. 13. The system for Personal Independence Payment will be easier for individuals to understand, so we expect people to be able to identify and report changes in their needs. However, we know that some people do not currently keep the Department informed. How can we encourage people to report changes in circumstances? As stated above deafblind people will have a stable or deteriorating condition so any changes will most likely be about an increase in need. Clear decision letters in an individual’s preferred format that explain the basis of the award (criteria and evidence used) would make reporting changes easier. There should also be a choice of reporting methods, including post, telephone, textphone, e-mail and internet. 15. Could some form of requirement to access advice and support, where appropriate, help encourage the minority of claimants who might otherwise not take action? If so, what would be the key features of such a system, and what would need to be avoided? We do not support the requirement to access advice and support and any subsequent sanctions that could be put in place as a result of a failure to do so. However it would be beneficial to tell deafblind people when applying for DLA about how to they could access social care support. 17. What are the key differences that we should take into account when assessing children? Assessment must be mindful of children with a dual sensory impairment that is developing, for example deaf children with Usher Syndrome whose vision loss may develop during teenage years. It will be essential to provide a stress-free and efficient way to ensure their increasing needs can be quickly take account of by their DLA award. 21. What impact could our proposals have on the different equality groups (our initial assessment of which is on page 28) and what else should be considered in developing the policy? We disagree with the policy aim to focus on those with the greatest need which is used to justify the impact on disabled people who will lose out as a result of this reform. Therefore the equality impact assessment should include the negative impact on disabled people due to the reduction in expenditure on DLA/PIP as individuals will either lose or receive a reduced level of support. It will be essential to allow for formal consultation with a very wide range of disability organisations, disabled people and their families throughout this process. Only then will the Government be able to fully assess the impact on different equality groups. A full equality impact assessment must be produced when the Welfare Reform Bill is published and when the draft Regulation are published during the course of the BiIl. 22. Is there anything else you would like to tell us about the proposals in this public consultation? Reassessing children and DLA claimants aged 65 and over Deafblind people who are in receipt of the PIP mobility component when they reach 65 should continue to have access to this given the fact that they will continue to face mobility barriers. If PIP awards for people over 65 are reviewed, it will be essential that assessors and decision makers do not make assumptions that older people will not need to be as mobile. Too often we hear about situations where professionals do not consider the mobility needs of deafblind older people, but only look at their ability to stay safe at home. Extending the qualifying period We do not support an extension of the qualifying period. This is presumably a device to save money and is regrettable, but it serves to emphasise the need to guarantee not only good-quality reablement support, but also rehabilitation services, for those who would benefit from them. The Department should examine provision of such services before making a final decision. We would be very happy to discuss our concerns further. For more information please contact: Simon Shaw, Parliamentary and Public Policy Officer (Welfare) Email: simon.shaw@sense.org.uk Voice and text: 020 7014 9386 1 Robertson, J., and Emerson, E., Centre for Disability Research, 2010, Estimating the Number of People with Co-occurring Vision and Hearing Impairments in the UK 2 Disability Alliance and 16 other national organisations, December 2010, Tackling Disability Poverty 3 DWP, 2005, Fraud, Error and other Incorrectness in Disability Living Allowance 4 Mencap et al, Don’t limit mobility, January 2010 ?? ?? ?? ?? 1