Personal Independence Payments (PIP) for people with epilepsy. General information about Personal Independence Payments 1 What the benefit is

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1 Personal Independence Payments (PIP) for people with epilepsy This information is for people living in England, Scotland and Wales. Personal Independence payments have not yet been introduced in Northern Ireland. Initials DLA DWP PIP Name in full Disability Living Allowance Department for Work and Pensions Personal Independence Payments General information about PIP Claiming Completing the form The assessment The decision If you re not happy with the decision Personal Independence Payments and epilepsy Useful organisations General information about Personal Independence Payments 1 What the benefit is Personal Independence Payment (PIP) is a benefit which helps with some of the extra costs caused by ill-health or disability. You must be between 16 and 64 to claim PIP. You can receive it whether you are in work or not. What you ll get is based on how your condition affects your ability to complete certain tasks, not on a particular condition. You can be paid either the daily living component, or the mobility component, or both components at the same time. You will need an assessment to work out the level of help you get. Your needs will be regularly reassessed to make sure you re getting the right support. Who can claim PIP Since 8 April 2013 Personal Independence Payment (PIP) has replaced Disability Living Allowance (DLA) for people aged 16 to Personal Independence Payment (PIP) - GOV.UK. Available at: [Accessed June 30, 2014]. 1

2 People aged under16 or 65 and over who are getting DLA at the moment will continue to receive DLA. However since October 2013, people have been assessed for PIP as soon as they registered a change in circumstances, or their current DLA award ended. To find out when you might be assessed for PIP you can use the PIP checker If you are under 16, you apply for DLA. If you are aged 65 or over and are not currently claiming DLA, you can apply for Attendance Allowance. The key tasks To qualify for Personal Independence Payment (PIP) you must be aged 16 to 64 and have difficulty with activities of daily living or with mobility. You may get the daily living component of PIP if you need help with things like: Preparing or eating food Washing and bathing Dressing and undressing Reading and communicating Managing your medicines or treatments Making decisions about money You must have had these difficulties for three months and expect them to last for at least nine months. What you ll get Personal Independence Payment (PIP) is paid every four weeks. It is tax free and can be paid if you are in or out of work. It is made up of two parts. Whether you get one or both of these depends on how your condition affects you. They are paid at a standard or an enhanced rate depending on whether your abilities are limited or severely limited. Points You score points according to how difficult it is for you to carry out a list of activities. You need to score at least eight points to be entitled to the standard rate and at least 12 points to be entitled to the enhanced rate. This is the same for each component. Rates of PIP Daily living component weekly rate Standard Enhanced

3 Mobility component weekly rate Standard Enhanced These amounts were correct in November Claiming To claim Personal Independence Payment (PIP) you have to phone the Department for Work and Pensions (DWP). They need to know your: Contact details and date of birth National Insurance number Bank or building society details Doctor s or health worker s name Details of any time you ve spent abroad, in a care home or in a hospital To make a claim from any part of England, Scotland or Wales call When you make the phone call, you will be put through to a DWP officer. The officer will ask you a number of questions. The call should take about 15 minutes. You will be asked whether you have any of the following: A mental health condition A behavioural condition A learning difficulty A developmental disorder A memory problem This is to help the DWP find out if you might need additional support or help through the claim process. You can also write to the address below asking for a form to send the above information by post. Bear in mind this can delay the decision on your claim. Personal Independence Payment New Claims Post Handling Site B Wolverhampton WV99 1AH Completing the form 2 You will then be sent a form called PIP2 How your condition affects you. It comes with 2 Personal Independence Payment (PIP) Disability Rights UK. Available at: [Accessed September 9, 2014]. 3

4 notes to help you fill it in. When completed, return the form to the Department for Work and Pensions (DWP). The address is on the form. There are 14 questions on the form. Questions 1 and 2 are about your personal details. Questions 3 to 14 are about your ability to carry out daily activities. Points are scored if you are not able to carry out a task reliably. Reliably here means to an acceptable standard, repeatedly and in a reasonable time. In a variable condition like epilepsy, you should choose descriptors for things which reflect your experience over fifty per cent (half) of the time. For more information on PIP and epilepsy including the 50per cent rule, see below. Describing your situation Here are some questions from the Personal Independence Payment (PIP) factsheet on the Disability Rights UK website. They will help you describe your situation as clearly and fully as possible. Do you need help from another person to do the activity? If you do need help, what kind of help do you need? Does someone physically help you, reassure you, encourage you, remind or explain to you how to do something? Or do they need to supervise you? Do you use aids and/or appliances to help you in an activity? If you do, say what they are and how useful they are. Can you do some parts of the activity but not others? Are you unable to do the activity at all? Explain why. Can you do an activity but it takes you a long time? If your needs vary, describe in what way and how often? Explain about good and bad days or how your needs vary throughout the day. If you regularly have accidents such as falls or are at risk of having accidents, explain why and when they happen now and what has happened in the past Do you have any side-effects from doing the activity? Do you experience pain, breathlessness, tiredness, stress or anxiety either during or after the activity? For a list of descriptors see Appendix B and C of the PIP factsheet on the Disability Rights UK website For a sample of the PIP2 form see the government website The questions Question 1 This asks you for details of a health professional. Whoever you put down, they need to know about how you manage daily activities. If necessary, make an appointment to see them. This gives you the opportunity to make sure they have all the information they need about you. 4

5 Question 2 This asks you for a copy of your prescription and a list of your side-effects. You can write about details of your side-effects later. Questions 3 to 14. For more detailed help with the answers to these questions, see pages 18 to 22 of the PIP factsheet on the Disability Rights UK website If you need to answer that your situation varies, make sure you explain this more fully in the extra information box. The form must be returned within one calendar month of it being sent out to you. Always keep at least one copy of it. When we enquired in November 2014, the DWP were taking about 26 weeks to respond to these forms and invite you for assessment. The assessment The in-person assessment is not done by the Department for Work and Pensions (DWP). It is done on their behalf by one of two companies called Capita and Atos. Which one you get depends on where in the UK you live. Once they have received your form, a healthcare professional will invite you to interview. They may also contact your health professional for more information before your assessment. The assessment takes place in an examination centre, or in your home, depending on which company you are with. If you have to go to them, you can claim travel expenses. The company has to give you seven days notice of an assessment. Taking someone with you You can take someone with you. They will not be able to answer any questions for you. But they are allowed to add information, if you want them to. Answering the questions Tell the healthcare professional about any pain or tiredness you feel, or would feel, while carrying out tasks, both on the day of the examination and over time. Consider how you would feel if you had to do the same task repeatedly. Tell them if you need reminding or encouraging to complete the tasks. Don t overestimate your ability to do things Make sure you are honest about how these activities would feel on a bad day, rather than a good day. Sounding positive about your condition is really useful in general life, but will not help to get you the financial support you may need. The healthcare professional may, with your consent, give you a brief medical examination. But mostly they will observe how you are during the interview, including how you got there. At the end of the assessment the healthcare professional should give you an overview of how they see your situation. And you should get an opportunity to add any final information. 5

6 For more information on PIP and epilepsy see below. The decision The healthcare professional sends a report to the Department for Work and Pensions (DWP) case manager. They make the final decision. If you are entitled to Personal Independence Payments (PIP), you will be told at what rate and for how long you will be entitled to it. Your needs will be regularly reassessed to make sure you re getting the right support. If there s a change in how your condition affects you, you need to tell the DWP straight away. If you are not entitled to PIP, you will get a letter and a follow-up phone call from the DWP explaining their decision. If you disagree with the decision, tell the person in the phone call. If you re not happy with the decision If you re not happy with the decision, you have one calendar month in which to challenge it. Mandatory reconsideration Once the Department for Work and Pensions (DWP) have made their decision about whether you are entitled to PIP, there are three aspects you could challenge. You may want to challenge the actual decision (if they have refused you PIP) or the rate or the length of time of the benefit award. Bear in mind that if you are challenging the rate or length of time, the DWP will look at your whole claim again. And this may result in you being entitled to less than with the first decision. You can also ask for reconsideration if your condition worsens. But be aware your benefit could go down as well as up. It s always good to get advice before you do this. How to challenge the decision Ring the Department for Work and Pensions (DWP) and ask for a reconsideration of the decision. Explain why you want it. Ask for copies of the evidence used to make their decision. And ask them not to do anything till you ve had a chance to think about your appeal. As well as the phone call, write them a letter with all this information in, and keep a copy. If you haven t heard anything in two weeks, ring them again. If the DWP don t change their mind they will send you a mandatory reconsideration notice which proves that you have asked for a reconsideration. You will need this if you want to lodge an appeal. If you still want to challenge the decision, you now have one calendar month from the date of the mandatory reconsideration notice to lodge an appeal to an independent tribunal. 6

7 Appealing In order to appeal, you must have asked for a reconsideration first. You will have to download a copy of the official notice of appeal form SSCS1. Alternatively, you can phone your local HM Courts and Tribunals Service (HMCTS) and ask to be sent the appeal form. How to prepare for an appeal: Be aware of time limits Make sure you have all possible useful documents. These could include anything medical such as a care plan, a seizure diary or evidence from a carer Keep a record of all contact you have with the DWP If at all possible, get a welfare benefits worker to help you. You may be able to find one from your nearest Citizens Advice Bureau or Welfare Rights Unit Be as prepared as you possibly can be Your chances of a successful appeal are much higher if you ask for a hearing and, if possible, you have someone to represent you. The tribunal is a fairly informal affair. You can take someone with you for support. You will usually get the decision very soon afterwards. For more information on appeals and reconsiderations see the appeals and reconsiderations factsheet on the Disability Rights UK website Personal Independence Payments and epilepsy The fifty per cent (50%) rule To qualify for Personal Independence Payments (PIP) you must meet the fifty per cent rule. You must need support fifty per cent or more of the time. For example, during a month, you must need support in order to be able to complete key tasks, at least 16 out of the 30 or 31 days of the month. In this situation you might qualify for PIP. But if you only needed support for 14 or less of the days, then you won t qualify for PIP. How to approach the interview Give yourself some time to think about your answer before you start speaking. If you pause too long during an answer they may think you have finished and move on to the next question. So once you ve started, keep going! Make sure you don t just talk about seizure frequency. They need to know about all possible impact on your life, including such things as anxiety and memory problems Know about your epilepsy Make sure you can explain clearly about your epilepsy pattern and what epilepsy medicines you re taking. A seizure diary may well help you to do this efficiently. Epilepsy Action has seizures diaries and a seizure app to download 7

8 Use our list to help Here is a list of the sorts of things that a person with epilepsy may need to mention. You could use this list to make notes about your situation: If there is a particular cause for your epilepsy for example a brain tumour What happens to you before a seizure What happens to you during a seizure How often you lose control of your bladder or bowel and any anxiety that may cause What your seizure recovery is like for example whether you need to go to sleep, or if your awareness is affected and how much help you need afterwards How long it takes you to recover from a seizure Whether you have had to go to hospital because of a seizure Whether you have recently been injured during a seizure for example cut your head Whether rescue medicine has been given to you by a carer or health professional after a seizure Any support you are given by a partner or carer What the side-effects of your medicines are for you Whether your memory and/or concentration are affected Any other impact your epilepsy may have on your life Any relevant information about other health conditions Make notes beforehand A lot of people understandably get anxious about the Personal Independence Payments (PIP) assessment. And a lot of people with epilepsy have problems with their memory. This can make it really difficult to get all your information across. Making notes beforehand of the things you think will be most important to say can really help once you are in the assessment. And don t forget to take your seizure diary with you. Take someone with you As with any important meeting, it can help to take someone with you. Ideally this will be someone who can help you feel as relaxed as possible. And someone who could remind you to look at your notes, if there are things you don t remember. Organisations that offer benefits advice For more detailed information on Personal Independence Payments (PIP) see any of these websites. Government website Tel: Website: gov.uk Disability Rights UK Website: PIP factsheet: 8

9 Appeals and mandatory reconsideration factsheet: Citizens Advice Bureau (CAB) CAB gives free, confidential, impartial and independent advice about your rights, including benefits. They can also help you fill out claim forms for benefits. Tel: (for advice by telephone) Tel: (for details of your local branch) Website: Law Centres Network This will help you find a law centre or other legal advice in your area. Website: lawcentres.org.uk/i-am-looking-for-advice DIAL UK Disability Information and Advice Line services, run by and for disabled people. They may be able to refer you to someone who can help you fill out claim forms for benefits (provided there is someone in your area). Freephone: (to find your local group) Website: Turn2us A confidential service which helps you to find out about benefits and grants you may be entitled to. Freephone: Website: Contact a family Offers benefits advice for people with a disabled child Tel: Website: cafamily.org.uk Also check with your local council to see if they have a Welfare Rights Unit. About this information This information is written by Epilepsy Action s advice and information team, with guidance and input from people living with epilepsy and medical experts. If you would like to know where our information is from, or there is anything you would like to say about the information, please contact us at epilepsy.org.uk/feedback Epilepsy Action makes every effort to ensure the accuracy of information but cannot be held liable for any actions taken based on this information. Date: Dec 2014 Due for review: Dec 2015 Code: F

10 Your support We hope you have found this information helpful. As a charity, we rely on donations to provide our advice and information. If you would like to make a donation, here are some ways you can do this. Visit Text ACT NOW to (This will cost you 5 plus your usual cost of sending a text. Epilepsy Action will receive 5.) Send a cheque payable to Epilepsy Action to the address below. Did you know you can also become a member of Epilepsy Action from as little as 1 a month? To find out more, visit epilepsy.org.uk/join or call Epilepsy Helpline Freephone , text , helpline@epilepsy.org.uk, Contact details Epilepsy Action, Gate Way Drive, Yeadon, Leeds LS19 7XY, UK, +44 (0) A registered charity (No ) and company limited by guarantee (No ) in England. Copyright Epilepsy Action 10