Joint Working Project Report on Survey Disability benefits and Arthritis Maureen McAllister

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Joint Working Survey Report - Background ..................................................... 3 Disability Living Allowance and Personal Independence Payment, Summary of results ............................................................................................................. 5 Disabled Parking (Blue) Badge scheme .......................................................... 7 Blue badge summary of results ....................................................................................................................... 8

Details of survey questions and results ........................................................... 9 Demographics of participants ......................................................................................................................... 9 Survey Section 2 - DLA / PIP questions ............................................................................................................ 9 Claiming the new Personal Independence Payment (PIP) .................................................................. 12 Section 3 - Blue Badge Scheme ..................................................................................................................... 13

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Joint Working Survey Report - Background Arthritis Care Scotland’s Joint working project commenced in April 2013; this project aims to support people with arthritis to remain in or return to work. Although the Joint Working service has only been available for less than a year, it was becoming clear that service users, who were already facing a host of difficulties with work or returning to work, were also experiencing considerable problems accessing a range of benefits. With regularity they were recounting their experiences, the stress and anxiety this caused them, of trying to access disability related benefits such as; Disability Living Allowance (DLA), Personal Independence Payment (PIP), Employment Support Allowance (ESA) and/or the Disabled Parking (Blue) badge. Welfare Reform Disability Living Allowance (DLA) for eligible people aged 16 to 64 is being replaced with Personal Independence Payment (PIP) from 8 April 2013. PIP is intended to help towards some of the extra costs arising from a long term ill-health condition or disability. PIP is based on an assessment of your individual need. It will not consider what impairment an individual has. Instead it will consider how the impairment affects your life, considering your ability to carry out a range of everyday activities. PIP is not means-tested or subject to tax and it is payable to people who are both in and out of work. A claim for PIP involves a more objective assessment, with a face-to-face consultation with an independent health professional for most people. It includes regular reviews so that individuals continue to get the right support. The PIP assessment The PIP assessment aims to test the person’s ability to carry out activities necessary to being able to live as independently as possible. It is a pointsrelated assessment, based on the ability to perform ten different activities relating to daily living needs and two activities relating to mobility. The number of points scored will determine whether or not you are entitled to either component of PIP and, if you are, at which rate.

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The ten daily living activities The ability to carry out daily living activities is assessed by focussing on ten types of such activity. These are: • Preparing food • Taking nutrition • Managing therapy or monitoring a health condition • Washing and bathing • Managing toilet needs or incontinence • Dressing and undressing • Communicating verbally • Reading and understanding signs, symbols and words • Engaging with other people face to face • Making budgeting decisions Prior to the reform of DLA, Arthritis Care (UK) carried out a survey in 2010, which directly informed the response to the consultation on the government’s proposals for reform of Disability Living Allowance. The response confirmed that DLA plays an absolutely vital role in the lives of the people with arthritis who claim it, ensuring that they are able to manage essential daily tasks; live independent dignified lives; retain employment and stay engaged in wider society. Arthritis is a fluctuating condition which causes a range of symptoms; inflammation, swelling, reduced mobility and or dexterity due to damage to joints. In addition to chronic pain that is often accompanied by fatigue and exhaustion. Mental health problems, typically depression are also recognised as a common co-morbidity for people with arthritis. Anecdotal evidence from individuals who engaged with the Joint Working Project gave details of a system which has not offered the level of support and security to those who have been diagnosed with a long term condition and who are in most need of these benefits. Despite the support available from professional advice services many people who accessed the Joint Working project, were unsuccessful in their applications for benefits or lost their benefit as a result of reviews. There does not seem to be one particular reason for this. Based on informal discussions with Arthritis Care members, Joint Working services users, advice service staff, the reasons appear to be one or a combination of the factors below;

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Staff helping the applicant with the form are unaware of nature of arthritis and the effects it can have. Applicant lacks the knowledge or communication skills, (verbal and/or written), to communicate their condition effectively. Need for simple and accurate, condition specific advice or information on completing the form, (paper or web based). Lack of expert knowledge or understanding by the independent assessment staff of the condition and medication. It is recognised that not everyone with arthritis will qualify for these benefits. However many who might be eligible may not receive them due to a combination of these factors. In order to ascertain how wide an issue this was for people with arthritis, a survey was created to hear the experiences of people living with arthritis and related conditions on the recent changes to benefits. The survey included the disabled parking scheme as there has been a marked rise in queries from people with Arthritis on this subject. The survey was split into three sections: Section 1 Personal information (optional) Section 2 DLA / PIP questions Section 3 Disabled Parking / Blue Badge questions The survey was made available on Survey Monkey, with email and paper copies being sent to individuals on our mailing list who live within the Greater Glasgow area. To ensure it was accessible to all who wanted to participate, the option to complete the survey over the phone was also offered. Participants were asked to complete whichever part applied to them. Most questions required them to choose an option; some also gave the chance to add their own comments. Disability Living Allowance and Personal Independence Payment, Summary of results The survey was completed by fifty people aged, over 16 years; most of the questions were completed by 90% or less of respondents, 82% were female and 8% male. 46% of those who completed confirmed that they also live with another condition. 5

DLA was being paid to 50% of participants, with 48% not feeling confident in their ability to communicate fully the impact of their condition on them when applying for benefits. Of these 42% stated that they need help completing the form, with only 26% having received assistance with it. Several comments were added by participants; “I tried to claim DLA but was turned down without being seen by anybody. I feel very bad and my condition is deteriorating all the time.” “I find the whole process of form filling difficult or knowing that I'm going to have to be re-assessed when I feel I have already been assessed and things aren't going to change (improve) rather they will deteriorate on the physical side and that affects my mental health and wellbeing too.” The full range of comments is included with all results of the survey, at the end of this report. 40% surveyed did not know about PIP, the benefit which is replacing DLA. This is despite the fact that the survey was carried out a considerable time since the launch of the replacement to DLA and after all DLA recipients would have been notified of the impending changes to the system by DWP. PIP is a new benefit and is being implemented in stages. It will be 2017 before all recipients will be offered the opportunity to claim it. As a result the numbers surveyed who have claimed or are receiving PIP are still small, in comparison to those currently receiving DLA. Only 8% had claimed PIP, of these 4% had been refused, with 2% still awaiting result of their application. There were numerous suggestions from participants about the support they thought should be available to help people with arthritis when making an application for benefits; “Someone who can help me to express myself and help me as it seems such a huge mountain to climb. I am on a lot of high dosage painkillers and can't think properly.”

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This survey gives a small illustration of the difficulties to come over the next few years, when the changeover from DLA to PIP is complete. It highlights that it is essential that we as an organisation considers how we can best support individuals with arthritis, their carers and advice staff in ensuring that they have access to relevant and accurate information on the range of disability related benefits. It may not be feasible for us to provide a full benefit advice service. Nevertheless, providing expert information and guidance on the application process, completing the forms and describing how the condition impacts on their mobility and ability to carry out daily tasks would be worthwhile. This would ensure applicants and their advisers become better informed on arthritis, thus improving their chances of making a successful claim. Disabled Parking (Blue) Badge scheme In addition to changes to disability related benefits. The disabled parking scheme was reviewed in 2012. Many people are automatically entitled to a blue badge if they were awarded specific rates of DLA or PIP or they meet other qualifying conditions. Those who do not qualify under these rules can still apply, but are required to detail on the application how their condition impacts on their mobility, with support from their GP. The original scheme had proved effective in enabling individuals with a fluctuating condition such as arthritis to access a valuable aid to their independence. The review now means that each local authority is responsible for administering the scheme and issuing Blue Badges to eligible applicants. Transport Scotland is responsible for the legislation which sets out the framework for the scheme and provides support to local authorities to help them deliver the scheme. As a result of the review there will be a change away from the current procedure where an applicant’s GP provides the medical assessment of eligibility for a blue badge. Instead independent mobility assessments (IMA’S) will be introduced, under the provisions of the Disabled Persons (Badges for Motor Vehicles) (Scotland) Amendment No 2 Regulations 2011. The aim of the new assessment process is to provide an objective and consistent independent assessment of applicants’ eligibility under the ‘unable to walk’ or ‘virtually unable to walk’ criteria.. 7

Mobility related assessments cannot be undertaken by council employees, so applicants requiring an assessment will be referred to independent health practitioners such as, Occupational Therapists or Physiotherapists. This is to ensure that those who do not automatically qualify for a blue badge have their eligibility assessed by a person who is appropriately trained in assessing mobility needs. The impact of the recent changes to the system has taken a while to be realised. This is mainly due to the fact that disabled parking badges were awarded for several years and the changes to the assessment is only implemented on new or renewal claims. Recent enquiries to Arthritis Care Scotland on this subject has given rise to concern that people with arthritis are having their new or review applications refused. Anecdotal evidence from applicants on their experience of the review process and result of subsequent appeals, indicate that people who had been awarded a badge for many years, were now being refused a replacement badge, despite their condition deteriorating. Due to this, questions relating to the scheme were included in the survey. Blue badge summary of results Of those who completed this section of the survey, 45% had held their badge for over 3 years, with 40% having made a recent application. Of these, 16% had a mobility assessment, with 10% not being successful. The application process was felt to be difficult by 9% of respondent, with one commenting; “I wasn't happy with my assessment as I wasn't examined to extent that stated on my form, the medical assessment questions that was asked was in no way related to my illness, my examiner didn't listen to me, I felt he was obnoxious , condescending, and rude to me and my carer,” It is unclear when all applicants will move over to the new system, however assuming that badges awarded prior to the review date, (September 2012), last for three years, then it is estimated that these will expire in 2015. While this part of the survey only touched on the subject and would benefit from further research as review claims rise, it is clear that people with arthritis 8

are vulnerable to the threat of losing a valued means to remaining independent. Currently Arthritis Care in Wales are campaigning to have the fluctuating and inflammatory symptoms of arthritis recognised when assessing the impact on an individual’s mobility. Enquiries have recently been made to Transport Scotland on this matter, it is hoped that we can gain an understanding of the assessment process to establish if the process takes account of inflammatory conditions. Details of survey questions and results Demographics of participants; Age category: Total answered 86%, (43). (participant numbers in brackets) Answer; 44% (22) were age between 16-64yrs, 42% (21) were over 65yrs. Gender: 90% (45) answered. Answer; 8% (4) Male, 82% (41) Female. Do you have arthritis? 90% (45) answered Answer; 78% (39) Yes, 12% (6) No. Do you have an additional disability? 80% answered Answer; 46% (23) Yes. 34% (17) No. Option was available to provide details of any other disability or long term condition. These consisted of; Asthma, high blood pressure, Glaucoma, Gout, Osteoporosis, angina, stroke, diabetes, emphysema, macular degeneration and heart problems. All participants were asked if they wish to participate in a case study of their experience. 80% replied of these 22% agreed they would, 58% declined. Survey Section 2 - DLA / PIP questions Do you receive DLA? 80% replied, Answer, 50% (25) Yes, 30% (15) No. 9

Do you know about the new benefit PIP? 78% replied, Answer, 38% (19) Yes, 40% (20) No. Do you feel able to fully express how your condition impacts on your life when completing forms? 74% replied, Answer, 26% (13) Yes, 48% (24) No. Will you need help completing the form? 76% replied, Answer, 42% (21) Yes, 34% (17) No. Have you received support from, or are you aware of any organisations that could help you with the form? 74% replied, Answer, 26% (13) Yes, 48% (24) No. Participants were also asked to provide any other information relevant to these questions. “I find the whole process of form filling difficult or knowing that I'm going to have to be re-assessed when I feel I have already been assessed and things aren't going to change (improve) rather they will deteriorate on the physical side and that affects my mental health and wellbeing too.” “I find this very tiring and difficult.” “I tried to claim DLA but was turned down without being seen by anybody. I feel very bad and my condition is deteriorating all the time.” “Not as sharp as I used to be due to age” “Claimed twice through welfare rights but was turned down.” What support should be available for people with arthritis to enable them to claim PIP? (Participants were asked for their suggestions) 10

“Someone/or organisation such as Arthritis Care to take the fear away and reassure people. Dedicated people with knowledge of all forms of arthritis to help with applications.” “Qualified individual to help express impact condition has on your life to help complete forms.” “it would be helpful to people with arthritis to get support with forms and appeals etc. as they are confusing ,and time consuming and that's just the mental side of the form, not the physical I have restricted mobility in my wrists and can’t write for any length of time.” “how to fill in the right details on the form which might make your claim more successful.” “Support to fully articulate the real impact of living with arthritis on all aspects of daily living.” “Advice and help to physically complete the form from a relevant support agency or worker. Someone who will help rather than administrate.” “help with filling in the forms would be useful.” “assistance with completing the writing, as I struggle to write. Perhaps the form could be available to be typed/completed online” “Knowledge of key words that are understood by decision makers. Help filling out forms by people who understand the system.” “Support as it's daunting the fact you need to prove how Arthritis affects you.” “Someone who can help me to express myself and help me as it seems such a huge mountain to climb. I am on a lot of high dosage painkillers and can't think properly.” “More understanding of form” “Advice and clerical help in filling in the form.” “help with form filling as they are always so complex” “Rheumatology Department/local Arthritis Club but not everyone can go to these, as a lot of people can be housebound?” 11

“Information given, helpline for support” “Someone with better knowledge of the system.” Claiming the new Personal Independence Payment (PIP) Participants were asked to complete this section if they have made a claim for PIP. Have you made a claim recently for PIP? 72% replied, Answer, 8% (4) Yes, 64% (32) No. What was the result of the claim? 8% replied, Answer, 2% (1) Awarded, 4% (2) Not awarded, 2% (1) Awaiting result. None of the participants provided details of their award. Did you find it easy to complete the form? 16% replied, Answer, 6% (3) Yes, 10% (5) No. It is acknowledged that this question may not have been fully understood as the result of this question does not tie with 8% of respondents who said they had made a claim for PIP. Did you receive help with the application? 16% replied, Answer, 10% (5) Yes, 6% (3) No. If you answered yes to this question, please provide details of the assistance you received with the application? “I went to somebody who fills in forms and helps people this way” “Daughter helped with form”

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Section 3 - Blue Badge Scheme There have been changes in the administration of the Disabled Parking, Blue Badge scheme. Each local authority is now responsible for administering the scheme and issuing Blue Badges to eligible applicants. Applications can be made and monitored online, there is still the option to complete a printed version and return by post. The local authority is responsible for deciding whether applicants are eligible and may ask applicants them to undergo a mobility assessment by an independent mobility professional, such as a physiotherapist or an occupational therapist. In such cases they will make the necessary arrangements. . How long have you had a blue badge? 62% replied, Answer, 16% (8) have had their badge under 3 Years, 45% (23) have had theirs over 3 Years. Have you applied for a new badge recently? 72% replied, Answer, 40% (20) Yes, 32% (16) No. Did you have to undergo a mobility assessment? 62% replied, Answer, 16% (8) Yes, 46% (23) No. Were you awarded a new badge? 52% replied, Answer, 42% (21 Yes), 10% (5) No. How easy did you find the process? 56% replied of these, 12% (6) found it easy, 26% (13) Not too difficult, 18% (9) Difficult.

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Comments on experience of applying for blue badge; “Not helpful. Completely discounted the nature of rheumatoid arthritis” “I wasn't happy with my assessment as I wasn't examined to extent that stated on my form, the medical assessment questions that was asked was in no way related to my illness, my examiner didn't listen to me, I felt he was obnoxious , condescending, and rude to me and my carer,” End of survey.

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