WORSE OFF! A REPORT ON HOW PERSONAL INDEPENDENCE PAYMENT TESTING WILL WORK 2 in 5 worse off 1 in 10 get nothing PEOPLE WITH LEARNING DISABILITIES FROM ACROSS SCOTLAND MAY LOSE OUT LEARNING DISABILITY ALLIANCE SCOTLAND Second Floor, Thorn House, 5 Rose Street Edinburgh, EH2 2PR Tel 079 201 418 23 Email: office@ldascotland.org Web: www.ldascotland.org
Personal Independence Payment (PIP) as it is known will replace Disability Living Allowance in 2013. It is the welfare benefit offering financial support to disabled people and can be used to help towards addi onal costs of being disabled. This can include things like aids and adaptations, higher heating bills and additional clothing costs. Disability Living Allowance (DLA) is a UK state benefit awarded to disabled people who need help ge ng around or looking a er themselves. It is not means tested in any way. So DLA can help people who are unable to work AND those who can. From 2013 14, all new and exis ng claimants of DLA aged 16 64 will be required to undergo an assessment. The exis ng lower, middle and higher rates of mobility and care components will be replaced by mobility and daily living components, which will both have only a standard and an enhanced rate. The applica on process for PIP will move to one in which an independent medical consulta on will be required. The assessment, for most people will involve a face to face mee ng with an independent healthcare professional and informa on will also be gathered from the claimant and the people and professionals who support them directly. A er considering how a person s daily life (by answering 9 ques ons) and their mobility (by answering 2 ques ons) are affected by their disability, a score will be given. All the informa on is sent to the Department of Work and Pensions where a government employee will decide if the person qualifies for PIP. Most PIP claims will be for fixed periods to ensure that there are regular reassessments for each claimant to ensure their needs haven t changed and they are ge ng the right amount of benefit. The Government have made it clear that they wish to reduce the DLA caseload by 20% in order to save money. DLA fraud is es mated at under 0.5%. There is a real concern that people with mild to moderate learning disabili es will lose out as their disability is o en hard to see. I am the Chair of the Learning Disability Alliance Scotland and I am very involved in groups of people speaking up. I have a learning disability and some difficulty in walking. I also have haemophilia. I get both DLA Care and Mobility. This is very important to me as it help me get out about to see people and live an ac ve and healthy life. I o en have to get taxis and they cost a lot more. The money helps me pay my bills and the phone, fuel and food bills are higher than ever. I like to cook with fresh food and that costs a bit more. I also have to use some of the money to pay charges for my social care to the local council. I m worried I might lose money when the benefit changes. I don t think other people with learning disabili es should lose out either. David, Peebles We invited service user and carer groups linked to the Learning Disability Alliance Scotland to take part. These were organisa ons that provide support services, advocacy and other support to people with learning disabili es and carers. 145 people took part in the survey. All the people who took part received care and support in one form or another and had been recognised as having a learning disability through an assessment by their local Social Work Dept.
OUR FINDINGS LOSING ALL ENTITLEMENT The most concerning finding was that a significant minority of 12% would lose all en tlement to the new benefit. LOSING SOME ENTITLEMENT However it was not just those who lost out all together who would see a change in their awards of PIP from what they had received under DLA. We found that many people who took part in the survey faced a reduc on in their current levels of en tlement. These were mainly people with learning disabili es whose need for support did not fit comfortably within the new criteria or did not receive enough points for the criteria that they were able to fulfil. However that does not mean they do not have a disability or need addi onal help. Only 4 people scored no points in any category at all. Across Scotland in 2010, SCLD found that there were 24,551 people with learning disabili es aged 16 64, meaning a total of 2,878 might be at risk of losing their en tlement to this essen al benefit. People can be counted in more than one column. What seems to be happening is that the rela vely simple triggers for DLA have been replaced with much more complex set of criteria. Many of the answers a ract rela vely low points meaning that even people who need some help in 4 or 5 areas do not score enough points to make the cut off 8 points for a Standard award. Never mind the 12 points needed for an enhanced award. Case Study 1 Losing All En tlement Alice is a young woman with Down s Syndrome. She lives in her own flat in the Gorgie area of Edinburgh. Alice has worked hard to make achievements in her life. She has two silver medals from par cipa on in the Special Olympics and has a part me job in the local supermarket on two days a week. She receives some support from a voluntary organisa on 3 mes a week to help her manage her money, her bills and other official correspondence. Alice has received low level of both care and mobility DLA for some considerable me. This has been important for her in maintaining her independence and being able to make the right choices in her life. Down s Syndrome brings with it a number of serious risks. People will die on average 20 years younger than others one in three will develop demen a in their 50s there are physical risks to do with heart condi ons and blood flow. Alice took part in one of our workshops and scored 4 points in both the Daily Living and Mobility elements of DLA. She will not be en tled to receive any of the new benefit and will be 41.10 per week worse off.
Cooking A Simple Meal One of the key ques ons for people with learning disabili es that has changed is on the ability to cook a simple meal from fresh ingredients. Being unable to do this safely on your own was enough to qualify for the lower level of Disability Living Allowance. However with the new criteria for the PIP, only one out of the 7 possible answers for this ques on gets enough points to qualify for the Standard element. All the others score less than half the points required. In our survey just over 20% of people fell into category of being unable to cook a simple meal at all. The other 80% would no longer have gained enough points from this key ac vity. Only 20% said they were now able to cook a meal on their own. The remaining 60% would require either specially adapted equipment or prac cal help to cook but this would not, on its own, be sufficient to qualify for the new benefit. Comments on the Cooking A Meal Ques on "Without help is a be er way of saying unaided." "To me that's the wrong ques on. I think it should be "can you cook a simple meal?"" ""What does conven onal mean?" "I o en eat microwave meals. I don't know how to prepare a meal and its quicker." "Using a microwave is not cooking a meal. It's mainly just to heat things up or for ready meals." "Ready meals cost more. Packaging and shop prices. They also aren't very healthy." Worse Off? However we wanted to understand what this meant in prac ce for individuals. Some people who took part lost one element of PIP but may gained in the other sec on. A simple way of looking at this is to look at the ques on of who were financial losers or winners through this process. The following pie chart shows how many people are worse off following a simple financial comparison between what people currently get in terms of addi onal income from DLA and what they might expect from PIP. Case Study 2 Losing Some En tlement Frankie lives in a small town in Dumfries & Galloway. He used to live in a long stay hospital for people with learning disabili es but moved out 20 years ago to live in a small group home run by a voluntary organisa on. He has since con nued to take up new challenges and to learn new skills to make his life be er. As a result he now lives in his own home which he manages with 9 hours of support a week from paid staff. He dedicates himself to helping others less fortunate than himself. Frankie has a learning disability, cannot read, has a long term health condi on which requires infrequent medical treatment and inpa ent stays and manages a gait problem that sees him almost always walking on the front of his feet. Currently Frankie receives medium rate care and high rate mobility DLA. Frankie took part in our study and scored 7 points in the Daily Living element of PIP meaning he will not be en tled to this part of the new benefit. He scored 8 points in the Mobility element of PIP meaning he will get the Standard part of the new benefit. In the Daily Living Criteria, Frankie scored points in 3 areas he need to use aids and appliances to manage to cook a simple meal, he need help to understand wri en communica on and he needs supervision to manage a health condi on. Despite this he only managed 7 points in this category, one less than needed. As a result Frankie will be 85.35 per week worse off as a result of these changes.
To do this we have assumed that the actual figures in payment under the new benefit will be the same as the current levels. While the actual payment levels have yet to be published, the government had indicated that they will be of the same order as present. If further informa on on future levels emerge, we will redo this chart. Planning and Following a Journey This ac vity that is part of the criteria for the Mobility Component. It judges the capacity of an individual to make journeys to places they know well and places they are unfamiliar with. It also looks at how distressed individuals become when on a journey. Enough points were available in this single ques on to be awarded the Enhanced Rate of PIP but many in our research found it confusing and hard to understand. We found that 40% people in our research will lose out in claiming the new benefit. One of the big changes in the new PIP is the ending of the Middle Care Rate. Those who currently receive this will either be reassessed up or down and those moving up to the Enhanced level of the PIP may well be be er off even if they lose out in the other element. The average amount people were worse off per week was 49. This come to an annual loss of 2,564. The amount of loss per person varied from 110 per week down to 20 depending on their previous en tlements. The ability to use public transport was judged to indicate a lower award but many people with learning disabili es memorise public transport routes and can follow them in a basic way but not be able to manage when things go wrong. Train delay, bus breakdown, harassment from other passengers or other unexpected occurrences could leave people trapped without knowing what to do. Many people who lost en tlement here were those who used their concessionary travel cards to learn how to travel by bus to their nearest big city The result of such work is that they now they might lose benefits and lose their bus pass at the same me meaning they can no longer afford to travel at all. Case Study 3 The Vanishing Middle Joey has a complex learning disability that gives him serious challenges in his day to day life. He has had life long diabetes and epilepsy and both remain well managed through medica on. For most of his life he lived at home with his parents but about ten years ago he moved to a small group home which he shares with 2 other people in East Lothian. He gets a lot personal support to help him in a range of areas. Despite the fact that his favourite football team is in trouble, he remains upbeat and happy. Joey receives the middle care rate and the higher mobility rate of Disability Living Allowance. Joey took part in our study along with a member of staff who helped him answer the ques ons. Joey scored points in the Daily Living element for the help he needs with cooking a meal, managing his health condi on, the support he needs for understanding complex verbal communica on and the help he needs to make complex financial decisions. He scored ten points which would be enough to qualify him for the Standard rate of the new benefit. In the mobility element of the new benefit, Joey scored 15 points as he needs help to travel on even simple journeys to places that he knows. This is enough for him to get the Enhanced rate of this part of the benefit. However, even with the Standard Daily Living element and the Enhanced Mobility of PIP, Joey will end up worse off than he is now by 31.30 per week.
Passpor ng Being awarded Personal Independence Payment in the future is likely to be extra important as there are a number of other benefits that will be linked to it. The basic award for Universal Credit will not be affected although many people will have to have a second type of test, the Work Capability Assessment. This will s ll place each individual into the work related group or the long term support group. However on top of the basic income level, Disability Premiums will be added linked the levels of Personal Independence Payment. It is the government s plan that any component of Personal Independence Payment will provide en tlement to the disability premium; the standard or enhanced rate of the daily living component will provide en tlement to the severe disability premium, the enhanced rate of the daily living component will provide en tlement to the enhanced disability premium. The Current Rates per week for a single person are Disability Premium 30.35 Severe Disability Premium 58.20 Enhanced Disability Premium 14.05 All 4 Case Studies Taking account of the Disability Premiums. For someone who loses their en tlement to all Personal Independence Payment such as a person who no longer qualifies for either of the Mobility or Daily Living Standard elements, they will also lose a further 88 per week in benefits. That is a further 4604 per year! For those people with learning disabili es who are in work but rely on Working Tax Credit (WTC) and its Disability premiums there are no firm plans. Currently a range of qualifying condi ons apply for the basic Disability element of WTC which is worth about 60 per week to those in employment. The severe disability element which is worth about another 30 per week is linked to the higher Care element of DLA. This will transfer over to the new Enhanced level of PIP. There has yet been no decision on the lower level of disability element of WTC. It is possible that even those in work will lose out and be much worse off than simply losing out on their en tlement to Personal Independence Payments. The Sco sh Parliament is currently looking at other passported benefits such as the Concessionary Travel Scheme, local leisure passes and so on. Not only may PIP losers have a lot less money they may have to pay much more for things they used to get for free. Case Study 1 Alice will not be en tled to any Personal Independence Payment and will not qualify for any of the Income Support (or Universal Credit) Disability Premiums. She will lose 41.10 per week from the PIP changes and a further 88.50 per week from the Disability Premiums. Overall Alice will lose 6,741 from her state benefits. Alice s life will be fundamentally transformed by this. Case Study 2 Frankie will s ll receive the mobility component of the Personal Independence Payment. He will s ll receive the basic Disability Premium but with lose the Severe Disability Premium. He will lose 85.35 per week from the PIP changes and 58.20 from the Disability Premiums. Overall Frankie will lose 7,464 from his state benefits. Frankie s life will be fundamentally transformed by this. Case Study 3 Joey will get the standard Daily Living and the enhanced Mobility components of PIP. He will s ll receive the basic Disability Premium and the Severe Disability Premium. He will lose 31.30 from the PIP changes and nothing from his Disability Premiums. Overall Joey will lose 1,627 per year from his state benefits. His life will be changed but may be manageable. Case Study 4 Angela will get the standard Daily Living and the enhanced Mobility components of PIP. She will s ll receive the basic Disability Premium and the Severe Disability Premium. She will gain 2.20 per week, an overall gain in income of 114 per year.
The Personal Independence Payment Criteria The criteria for Personal Independence Payments are the subject to a consulta on. The new benefit uses criteria in the form of ques ons to assess the individual s abili es for both the Daily Living and Mobility Elements of PIP. use that to inform the DWP about suitable changes before the new benefit take effect. We also hoped that this informa on will be useful in helping people prepare for the new benefit and to help them think carefully about how they might prepare for the applica on process. The criteria are simplified proxies for understanding people s level of independence. They do not cover what happens in every situa on and some of these challenges are quite subtle. Daily Living component 1 Preparing and cooking food 2 Taking nutri on 3 Managing therapies or monitoring a health condi on 4 Bathing and grooming 5 Managing toilet needs or incon nence 6 Dressing and undressing 7 Communica ng 8 Engaging Socially 9 Managing Financial Decisions Mobility Component 10 Planning and following a journey 11 Moving around Many concerns are emerging about the new criteria. For example, the change in the way that the mobility element is assessed will affect many people with visual impairments. The ability to travel independently to familiar places will prevent visually impaired people scoring sufficient points to be awarded the enhanced mobility rate despite the daily difficul es due to travel disrup on or street works. For people with learning disabili es, the low level of DLA Care was triggered when people could not cook a hot meal from fresh ingredients by themselves. However the new PIP criteria is more complicated, some points were awarded for this but a whole series of grada ons made it hard to know who would score what and how many points they would get for this answer. Collec ng Views The Learning Disability Alliance Scotland ran a series of short workshops across the country from Lochmaben to Larkhall in early 2012. Our aim was to collect informa on on the effects of the changes on people with learning disabili es and Assessing the criteria in East Kilbride We wanted to be able to speak to people with learning disabili es themselves about the new benefit but we also wanted to be able to speak to family carers. Many people with learning disabili es have severe and complex issues and we wanted their family carers to be able to speak up for them. We prepared an interac ve presenta on that individuals with learning disabili es or their family carers could use to score each of the ques ons using remote control handsets for each par cipant. People were asked to iden fy on a demographic slide their current level of Disability Living Allowance. Each of the criteria was then introduced on a vo ng slide. The language used was simplified and made more straigh orward to help in understanding. At the end of each sec on, the results were displayed so that individuals could iden fy their own handset and see the corresponding score. At this point we revealed the scoring levels for both the Standard and Enhanced levels of PIP. This was followed by a ques on and answer session and a chance to iden fy par cular concerns or issues.
What changes would make things be er for people with learning disabili es? The points awarded in the following ac vi es should be increased Ac vity One Preparing and Cooking a meal The descriptor Needs promp ng to either prepare or cook a simple meal should be given a weigh ng of 4 points on a similar scale to E & F. Promp ng is a crucial aspect of ensuring that people can eat well and healthily and not become too dependent on frozen, takeaway meals or other forms of one step food prepara on. Ac vity 7 Communica ng We think that this is crucial ac vity for people with learning disabili es. Many people found this hard to understand and to be sure how to answer it appropriately. We think that the language used in the descriptors needs clarified and that an example about the use of Easy Read publica on be used to illustrate support in understanding wri ng. Ac vity 9 Making financial decisions The reasoning skills need to manage financial transac on are essen al in the 21 st century. Being properly supported in this area can make the real difference between becoming and remaining independent and need con nual support. The maximum points available for this ac vity should be 8 and the other descriptors increased by 2 points each. There are more sugges ons available at our website. I am the chairperson of a learning disability group in Aberdeen for people who use services and I have a learning disability myself and other health issues too, like epilepsy and ME. I get DLA Care and Mobility. It is important to me and my family because of the high cost of living and because I am unable to do a job. We have higher fuel bills because we are home a lot. We have to buy prepared frozen food because we find cooking difficult. I m worried I might lose this benefit when it changes and I know lots of other people feel the same. Ian, Aberdeen Case Study 4 Be er Off Angela s Dad took part in one of the Carer s sessions. He has been worrying about what will happen to his daughter s benefit since the changes were announced. He see the opportuni es that Angela can have from these benefits as important to challenging the isola on caused by her au sm. Angela lives in supported accommoda on and gets about 14 hours of support a week to help her manage her life. She has a moderate learning disability, a degree of au sm and par al hemiplegia of the le side making it hard for her to walk. She is close to her parents and spends me with them regularly each weekend. Her Dad o en goes with her to mee ngs and appointments to help her communicate. Angela currently gets the middle rate care element and the lower rate mobility of Disability Living Allowance. Angela scored points in the Daily Living element for the help she needs with cooking a meal, managing her health condi on, the support she needs to engage with other people and to eat properly and the help she needs to make complex financial decisions. She scored eleven points which would be enough to qualify her for only the Standard rate of the new benefit. However Angela scored 16 points on the mobility element of PIP as her physical challenges in walking along with her comprehension difficul es in travelling were both recognised in the new criteria. She moved from the lower rate to the Enhanced Mobility element. She will be 2.20 a week be er off. While this won t make a big difference to Angela, the result was very comfor ng for Angela s Dad who realised she might not end up too badly off compared to others.