From: Sarah [sarah@chantryhealth.co.uk] Sent: 01 January 2011 13:20 To: DWP Consultation DLAReform Cc: Linda Riseborough Subject: AOHNP (UK) Follow Up Flag: Follow up Flag Status: Completed Thank you for asking the AOHNP (UK) to respond to the DLA reform consultation document. I have been asked to respond on behalf of the Association and my responses to the questions posed are as follows: Chapter 5: Questions 1. What are the problems or barriers that prevent disabled people participating in society and leading independent, full and active lives? The impact of their condition on their mobility, stamina and cognition, The access arrangements of society. If the person has physical mobility restrictions or a permanent underlying health problem, a great deal of stamina is expended to undertake activities just to exist day to day. It requires an immense amount of organisation and planning to eg travel, access areas other than home. Despite best intentions, eg lifts being out of order, lack of toilet facilities, delays in obtaining assistance eg on and off trains, impact immensely on a disables person and are a huge barrier both to work and living an independent life. The additional cost of having a physical mobility problem is also prohibitive – eg have to physically go to the train station in person to book assistance ( unable to do by phone) which costs time (fuel & carer) and further impacts on time and stamina. Even small things, fighting to open doors (just get in a wheelchair or mobility scooter and try to open the average fire door) are huge barriers to life and work. Slopes are great, but it is very hard to self propel a wheelchair up them – so cannot be independent. Most ‘disabled access’ including Motability scheme, makes the assumption that the disabled person has a ‘carer’ with them (eg who actually pushes the wheelchair up the ramp? Who gets the ramp down?). An independent single disabled person faces huge additional costs to make the adaptions necessary for independent living, driving etc Public transport (trains excepting) does not allow electric scooters on, so unless one can self propel in a wheelchair, one cannot travel independently on them. The bus service cannot guarantee that even their allocated ‘wheelchair access’ vehicles are functioning, or will run on a particular service. Therefore the bus pass that is available for the independent wheelchair user is functionally useless on the bus service - thus they incur the higher transport cost of running a car or getting a disabled access taxi 2. Is there anything else about Disability Living Allowance (DLA) that should stay the same? It should remain as a benefit that is not means tested. It should look at different aspects of disability (ie the care and mobility) 3. What are the main extra costs that disabled people face? Equipment to facilitate both activities of daily living and mobility ( please note that any equipment designed for ‘disability or mobility’ attracts a higher price tag). Adapting the home/car – parking, very few disabled parking spaces are free or concessionary. It tales a physically impaired person longer to get out of the car (electric hoists, chairs etc) undertake task, meeting etc and so they incur higher parking charges than physically able. Transport – running or access to a car is usually essential eg cannot even walk to local shop, post box etc, has to be a car journey. Maintaining health and function – eg regular GP, Physio etc appointments (car, transport), prescription charges (pre paid now over £100 per annum), costs of eg swimming or exercise to maximise and maintain physical function. Care/assistance. Heating/electric – as usually at home for greater part of the day than those that work full time, physically disabled individuals consume more energy costs. Individual often requires more heat etc due to nature of condition. Specialised equipment usually needs electric to run it ( eg bath hoist, electric aids etc) and charging of medical aids Insurance = higher for any travel, higher for adapted car All consumables = extra cost as have to add transport cost 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? 5. You have not given enough information in the consultation document regarding the 2 components, or how they are assessed to enable a valid response to this question • What, if any, disadvantages or problems could having two rates per component cause? Again, not enough information is given in the document to enable a valid response to this question. Thought needs to be given to any weighting of the 2 compoments. 6. 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? Terminally ill ( that is a firm diagnosis of less than 12 months of life expectancy) should be automatically entitled. However, all claims should be based on the needs and circumstances of the individual rather than the ‘diagnosis label’ given them. 7. How do we prioritise support to those people least able to live full and active lives? Which activities are most essential for everyday life? Being able to get services (including food) into the home that is a safe and adequate environment for the individual to sustain life. Being able to wash, dress, move from sleeping area to living/social area. Being able to obtain ( including supply of ) food and nutrition in a format that can be consumed by the individual. Having adequate arrangements for toileting needs. Having activities to mentally stimulate or meet social needs of individual. Being kept safe from harm (including from self) without restraint. 8. How can we best ensure that the new assessment appropriately takes account of variable and fluctuating conditions? By evaluating how much effort it costs the individual to undertake the assessed task and how long for recover. At what cost to the individual is the task undertaken? If they undertake the assessed task, how sustainable is it? EG can they do it once a day, a week, a month or only eg in exceptional circumstances eg escaping a fire or life threatening event? Has the assessor taken into account the effort or impact on the individual’s stamina of everyday life in addition to the task assessed? Has the assessor any understanding of the variability of different medical conditions? Eg can have good days and bad days. 9. Should the assessment of a disabled person’s ability take into account any aids and adaptations they use Yes, if without the aids and adaptations, they individual would not be able to do the task • What aids and adaptations should be included? Any that allow the person to undertake the task – the key question should be if the person had not got the aid or adaptation, would they be able to undertake the task? • Should the assessment only take into account aids and adaptations where the person already has them or should we consider those that the person might be eligible for and can easily obtain? Should take into account both – and then decide whether realistic, pragmatic for the person to obtain any additional equipment. Ability to use additional equipment, storage and cost should be considered. 10. 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? You could obtain the information you require in less than half the questions – at present the form is repetitive, relies on very subjective data. It also does not include information that should be considered as part of a valid and reliable assessment • 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? Being consistent with the information produced and ensuring that this is accurate and reflects the reality of the benefit. Ensuring that staff give the public the same information (at present can obtain several different answers to same query!) 11. What supporting evidence will help provide a clear assessment of ability and who is best placed to provide this? Primary health care team, eg GP, OT, Physio, medical report from treating consultant etc. If individual has mobility or care needs, they will have had input from one of these sources and so information should be forthcoming 12. 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? Depends on the assessing and interpersonal skills of the health care professional in question. They need to engage with the individual and have the necessary clinical skills to look up from their computer screen and OBSERVE the individual concerned. From this a good basic assessment of basic physical and psychological function can be made. • 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? If the individual is too unwell to undertake such a meeting. If the healthcare professional has not the adequate clinical or interpersonal skills to undertake the assessment. 13. 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? The information on the application form plus and additional supporting evidence (eg from Primary Health Care Team, other health care professionals) should be assessed. From this it should be apparent if further assessment is required. 14. 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? When the annual notification of payment is ent to individuals, a non threatening statement reminding individual to report changes in their needs with contact details should be clearly displayed Being in contact with your other agencies eg the Shaw Trust, who do not appear to inform you when circumstances have changed in a person’s abilities. 15. What types of advice and information are people applying for Personal Independence Payment likely to need and would it be helpful to provide this as part of the benefit claiming process? Clear information – can it be kept to one page? What it is for, who can claim it, how to claim. 16. 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? 17. How do disabled people currently fund their aids and adaptations? Should there be an option to use Personal Independence Payment to meet a one-off cost? Self financed or by applying for grants. Limited availability through local authority for eg one wheelchair or assistance towards eg ramp. 18. What are the key differences that we should take into account when assessing children? Any additional impact /cost that the disability causes when compared to an able bodied child. Also the comparable speed with which changes in children occur ( eg growth and impact on equipment size) 19. How important or useful has DLA been at getting disabled people access to other services or entitlements? Are there things we can do to improve these passporting arrangements? 20. What would be the implications for disabled people and service providers if it was not possible for Personal Independence Payment to be used as a passport to other benefits and services? A lot less confusing and much less paperwork! It might also enable service providers to ensure that by using PIP as a passport, that they are directing their services to those most in need ( assuming that the PIP assessment is going to be valid, reliable and effective) 21. What different assessments for disability benefits or services could be combined and what information about the disabled person could be shared to minimise bureaucracy and duplication? When applying for Blue Badge, when applying to Local Authorities for services etc 22. 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? If a person is disabled, the impact is shared across the equality groups, as long as the person is assessed and treated as an individual then there should be no other impact on the equality groups. Disability is a great leveller! 23. Is there anything else you would like to tell us about the proposals in this public consultation? It is essential that stamina is taking into consideration, along with sustainability of task when conducting the assessment. Undertaking a task as a ‘one off’ is not an indicator that it can be repeated unless the true cost of undertaking the task on that individual can be effectively assessed. You do need to ensure you have assessment staff who are clinically competent and that the process allows them to use their clinical skills rather than being unable to observe the individual due to the demands of the IT system employed. If the initial assessment is undertaken in a thorough and effective manner, then it will be far more reliable. Then there will be far less appeals (and at present many appeals are successful due to the ineptitude of initial assessment) and the original decision should be more frequently upheld on appeal as the assessment will be effective, valid and reliable. This will safe time, money and ensure that the system gains respect – which at the moment is sadly lacking. Sarah O'Hara RGN, BSc(Hons), MSc, CMIOSHH Specialist Practitioner (Occupational Health) Director of AOHNP (UK) On Behalf of AOHNP