From: liz [liz@colinarmour.plus.net] Sent: 18 February 2011 13:41 To: DWP Consultation DLAReform Subject: MS Therapy Centres (Scotland) Dear Sirs, Please find my comments on the proposed Disability Living Allowance Reform. It is very worrying to see this change is identified as being related to a cost cutting exercise and it is therefore apparent that some disabled people presently in receipt of this benefit will either have present benefits reduced or removed and further claimants for the proposed PIP will have increased difficulty in accessing a benefit that was initiated to support disabled people. This change will in fact raise barriers and further penalise disabled people, reducing their opportunity to lead independent and socially fulfilled lives. People in receipt of this benefit are already wondering and worrying what effect this will have on them and expressing concerns regarding assessments. The statement that the new benefit will target those in greatest need suggests that those with more moderate needs will no longer be eligible for this benefit. This will not, however, make their disability disappear and the disabled persons will still have to cope but in reduced financial circumstance which may have a significant effect on their health, stress levels and quality of life. This may also impact on carers and family. In your report, the possibility is mentioned of including the use of aids such as wheelchairs and other aids in the personal assessment. Many such aids as used by individuals are essential for safety reasons or to aid mobility and help improve quality of life. Are disabled people therefore going to be penalised for utilising such aids? Another of my concerns is that the document indicates that there will be a talk with the individual, not an assessment by way of the person demonstrating their abilities. The home and community environment may also be a significant factor in the person’s capabilities to manage at home and socialise within their community. How will this aspect be factored into your assessment? Also, given the nature of some illnesses e.g. MS, which can fluctuate on an hourly / daily/and uncertain basis, how will this aspect be accommodated within the assessment? As the assessment is not yet published, it is a piece of the jigsaw missing in discussing the changes and impact these changes will make. Also, who will carry out the assessment? As incorrect assessments will lead to a high number of appeals, this will add to the increase in the significant costs that the changes proposed will incur. The document states that it will seek the views of other health practitioners in relation to individuals. While this can provide valuable pieces of evidence, many people receiving DLA use this to help minimise the impact of their disability/illnesses and may not receive large amounts of support from statutory services or GP’s. People with a disability/ illness tend to be experts in that field and try to prevent potential complications by carefully managing their disability/illness as much as they possibly can and utilising services to suit their personal needs and include private physiotherapy and home help services. This is helping to reduce the burden on the NHS or Local Authority services. What about the views of informal carers who provide the majority of care over 24 hours? Will they be present at this assessment to support the person and will their information be regarded with the same relevance as that of a health professional? The carer will always be far more acquainted with the overall situation and impact of the disability /illness on the individual. Concerning the application process, 6 months seems a very long time for individuals to have wait before applying for this benefit. Some illnesses/disabilities will be apparent from early diagnosis regarding their potential need for intervention. I believe re-assessment needs to be relevant to the individual and their condition. With certain disabilities /illnesses such as MS in the progressive stage , it will be apparent that there will not be improvements in the condition. As you identify, a telephone conversation may all that is necessary to determine if the situation remains the same without wasting the assessors’ time or stressing individuals with re-assessments. There are some positives within the document That it is to remain a cash benefit. It will not be means tested. It is positive to note that those being discharged from hospital or care home after exceeding 28 days will not have to reapply for the benefit but it will be restarted on informing the department. Please find below my comments to your consultation questions. DLA – PIP Consultation Questions Question 1 What are the problems or barriers that prevent disabled people participating in society and leading independent, full and active lives? The main difficulty is their underlying illness and how this affects them. The lack of finance. The lack of knowledge on how to access benefits to improve their situation by way of aids or adaptations to their environment and prevent debt. Social isolation due to lack of mobility/transport. Employers who do not wish to employ persons with long term conditions. Employers who are not able or are reluctant to accommodate employees with long term conditions. Question 2 Is there anything else about DLA that should stay the same? That it is cash benefit. That it is not means tested. That there is the ability for increased payments as the condition deteriorates. Question 3 What are the main extra costs that disabled people face? Heating /aids and equipment, including consumables. Transport to GP’s, hospitals and physiotherapy and other treatments. The costs of private treatments/services where these are not met by the NHS or other statutory services. The need to use trades people for household and garden maintenance when no longer able to do task themselves. Question 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? It is difficult to answer both these questions without knowledge of the structure of the new benefit. The need for support should reflect that people have varying levels of disability, which DLA does. Whilst the new approach is not “One size fits all”, it is worrying what this reduction to just two levels implies that a greater number of disabled people will not meet the new criteria. Question 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? It should be based on individual needs. Question 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. By prioritising those least able, you are excluding those with less severe disabilities who currently receive DLA, which helps maintain their health /independence as much as possible, reducing the burden on NHS and statutory service and other benefits. It is the individual that is best placed to determine the essentials for their everyday life; however basic personal care requirements need to be addressed and the emotional, psychological and spiritual needs need to catered for to allow the individual to lead full and active lives Question 7 How can we best ensure that the new assessment appropriately takes account of variable and fluctuating conditions? Assessments need to take into account the specific problems provided by differing long-term conditions. From reports seen, the current “fitness to work assessments” have repeatedly failed in this respect. The assessments need to sensitive enough to identify where this is a problem and the assessors need to be instructed to ensure that this is taken into consideration. The individual and carer need to be listened to. Question 8 Should the assessment of a disabled person’s ability take into account any aids and adaptations they use? • What aids and adaptations should be included? • 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? Regardless of aids used, the individual still has the disability or long term chronic condition. At present, people with MS might use part of their DLA to purchase essential aids or the consumables that they require. An individual often uses the higher mobility rate of DLA to lease a car through the motability scheme which allows people to remain independent and not socially isolated. It would be useful if assessors could identify potential aids and how they could be obtained without extra costs being incurred. These aids help but do not diminish the disabilities faced. Question 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? Unable to comment until new claim form produced. As there is not yet a draft of the new benefit, information difficult to know. Question 10 What supporting evidence will help provide a clear assessment of ability and who is best placed to provide this? Health professional and statutory services who have input into care provided and informal carers who have a 24/7 overview of the circumstances. Question 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? • 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? a.. Difficulties are the stress that a face to face discussion will generate before during and after the event. b.. Many people tend to minimise their difficulties because they are presently receiving aid /support from informal carers that they do not always recognise, this is why it is important to include carer’s viewpoints. It may be inappropriate if this is deemed as unsuitable by the person’s health professional e.g. GP/Consultant or specialist nurse. Question 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? This depends very much on the individual disability and where they are in their condition. The review should be fit for purpose and not bureaucratic and costly to the person in stress/time . It should also not be wasting the time of assessors with unnecessary re-assessments. Question 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? This requires to be clearly stated in the information and this will also surely be reflected in the assessment review process if it is anticipated that there is the potential for an improvement or deterioration to a person’s condition. Question 14 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? I would think that criteria/ process /benefit entitlement would all be information claimants would need on application to prevent unnecessary claims for the benefit of the person. And to prevent unnecessary waiting lists to develop. Question 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? Some disabled people may not be aware of aids and adaptations available to help them and may need support to action this e.g. persons with cognitive or mental health problems. There is a need to avoid punitive measures for not complying, rather to assess why not, and involving carers and key workers to support initiatives. Question 16 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? Many disabled people use their DLA or self-fund which also has implications on family finances. A person’s disability has far-reaching consequences on family life and circumstances. Any potential financial benefit to support aids and adaptations would be of value. Question 17 What are the key differences that we should take into account when assessing children? Childhood disability can be very costly with equipment requiring to be upgraded as the child grows and also it is significantly more expensive when this specialised equipment cannot bought from high street outlets.. Parents have the responsibility for round the clock care of children; however the child’s disability may place an extra burden of care-giving that if not supported by a variety of means, which may inhibit the families’ ability to cope and put the family unit and health at risk. Question 18 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? DLA has been very useful for accessing other benefits, however unsure of the format of the new PIP and how this will change the present system. Question 19 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? Any reduction on present benefits would impact on disabled person’s quality of life in some form or another depending on the individual circumstances. Question 20 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? Question 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? As Chair of Multiple Sclerosis Therapy Centres (Scotland) MSTC(S), no official consultation has taken place within our centres; however some centre representatives have e-mailed me their comments regarding this document which I have enclosed. (please see below). You mention in your document further consultation concerning this review of the DLA and proposed PIP and I would very much like to be made aware of further consultations on this subject. Yours sincerely Elizabeth Armour Chair MS Therapy Centres(Scotland) Duncrievie House College Road Methven Perth PH1 3PB (http://www.mstherapycentres.org.uk/index.htm) Comments I have received from MSTC(S) centre representatives Sandra Owens MSTC Oban My views on it. I am afraid that these new assessments will be carried out on the same basis as the new Employment Support Allowance which was highlighted on television. The assessment was carried out by a so called health board practitioner, which required a person to receive 15 points before he was awarded the ESA. The majority of people felt that the interviewer did not listen to them and disregarded their symptoms and state of health. As part of the assessment for the PIP, daily activities will be assessed as in section 25 & 26. I fear that people with MS will not be given a fair result as their symptoms can fluctuate, and very often are not visible to an onlooker. It may be construed that if they can do one task that they are able to do more, not taking into account of the fatigue that can arise. I think this is another strategy of the government to get people off benefits and back to work. If only the jobs were available!! If any of our clients had their DLA stopped and not awarded PIP, they would suffer great hardship as the jobs in this area are not readily available and possibly not suitable for someone with MS. They would probably be put on jobseekers which is £64 per week. Not a lot to live on!! The government better get this right or they might have a wheel chair demonstration at Downing Street. ………………………………………………………………………………………….. Bruce Mainland (secretary) MSTC Orkney Any change to how people claim benefits is worrying. I think probably some people will lose out. The clause on mobility seems a little strange, we have quite a few wheel chair users at the centre who might find that there benefits are cut Bruce Mainland (secretary) MSTC Orkney ………………………………………………………………………………………… Fiona Burns MSTC Edinburgh I would point out though that no one person is the same and that I might be fine today but who knows tomorrow- that is the thing with MS. I think it is a bigger waste of money to periodically assess us when let's face it our MS is going nowhere!!!