Completing the ESA50 questionnaire

shinecharity.org.uk [email protected] 42 Park Road Peterborough PE1 2UQ 01733 555988 Completing the ESA50 questionnaire Notes to assist you w...
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shinecharity.org.uk [email protected] 42 Park Road Peterborough PE1 2UQ 01733 555988

Completing the ESA50 questionnaire

Notes to assist you when moving from Incapacity Benefit, Severe Disability Allowance, or Income Support (paid on the grounds of incapacity) to Employment & Support Allowance (ESA) The Employment & Support Allowance (ESA) assessment will look at how you manage your daily living activities and give you points for each activity, which are then totalled. You will need to score at least 15 points to be awarded ESA. You will be moved over to ESA if you are found to have a limited capacity for work, and you will be placed in either the work-related activity group or the support group.

Filling in the questionnaire The questionnaire is divided into ten activity headings. Under each activity you are asked whether you can do the particular activity without any difficulty. Read all the options relating to the activity before ticking the box. Do try and get help to fill in the questionnaire from an advice agency like Citizens Advice Bureau, or a Welfare Rights Advisor, sometimes employed by Adult Care & Support. Shine may be able to provide advice to assist you to fill in forms, please contact your regional office to enquire. Send in professional evidence to support your claim if you can. The letter should explain why they think that you would have difficulties working. There may be a charge for reports from GPs and hospital consultants. When deciding which box to tick, remember that regulations state that you should be able to do the task: • Reliably • Repeatedly – this means as often as you need to. • Safely • Within a reasonable time period – this means no more than twice as long as the time it takes a person without a disability to carry out the activity. Think about whether you can do a task reliably, taking into account: • Safety – are there any risks involved? Have you had any accidents or injuries attempting the activity? • Tiredness – do you need to rest or take painkillers? How often would you need to rest? • Pain or discomfort – could you carry out an activity several times, with reasonable regularity?

• Balance problems – do you find it difficult to carry out tasks due to poor balance? Consider how long it takes you to deal with the activities of daily living and how long it takes you to move around outdoors. Do not guess at the time taken; ask someone to time this for you. If your condition varies, try to give an idea of how many days a week you would be able to do the task, and how many you would not. Think about keeping a diary for a few days and to write down all the day-to-day activities that you have difficulties doing. Note down: • Any assistance you need from another person. • If you need reminding, prompting or encouraging to start or complete a task. Page 3 on the ESA50 form asks you about any help you would need if you have to go to a face-to-face assessment. Give details about: • Any problems with getting up or down stairs • Any difficulties in using public transport • Do you need someone with you to cope with doors/ramps? • Explain if you have hydrocephalus and have problems with how you do things and how you take in and understand information, and how you process information. If this is the case, ask to be assessed by a Mental Health and Cognitive specialist assessor. Page 5 asks about any aids you use. List: • Mobility aids such as a manual or powered wheelchair, prosthesis, crutches, callipers, orthopaedic footwear, or walking sticks. • Any aids that you use for activities e.g. a transfer board, hoist and a long handled grabber. Any aids/adaptations that you use at work, if you are in employment. Page 7 asks about moving around and using steps. When answering, remember that you must be able to do the activity safely, to an acceptable standard, as often as you need to and in a reasonable length of time – using mobility aids when necessary. Think carefully how far you can move on level ground, without needing to stop. Do not guess at distances, ask someone to measure the distance for you, and if your progress is slow, write down how long it has taken you. If your ability to move around is affected by tiredness, pain, breathlessness, coordination or balance, and you would be unable to move around repeatedly after a reasonable rest period, make this clear. Going up and down two steps – without help from another person, if there is a rail to hold on to: • Provide details if you can only do this with the use of two handrails. • If you can do this once, but pain, fatigue, balance or coordination problems prevent you from doing it repeatedly (after reasonable rest periods), you should explain this. • If you have fallen when trying to negotiate steps in the past, explain what happened.

Page 8 asks about standing and sitting: • If you are a wheelchair user, and can only transfer with the assistance of someone else, explain what help you need. Simple aids, such as a transfer board, will be taken into account. • Explain if you can only stand up using two sticks or callipers. • If you have poor balance, explain this and go into detail about any pain or exhaustion that results from standing or sitting. • Write down if you have problems with similar activities, such as getting on and off a toilet or in and out of a car. Page 9 asks about picking up and moving things. It is assumed that you are moving the object at waist level: • You normally need two hands to move a large box, even if it is empty. Explain if you are unable to move an empty cardboard box, as you need a free hand to hold on to walking sticks or callipers, or a free hand to enable you to steer your wheelchair. • If you have dropped objects of a similar size to a one- or two-pint carton of liquid, or a large cardboard box in the past, write down what happened. Page 10 asks about communicating with people: • If you have short-term memory problems, as a result of hydrocephalus, explain if you have difficulties in recalling what has been said to you, and how often this happens. Page 11 is about other people communicating with you. This activity is relevant if you have hearing or visual problems. • Provide details if you cannot hear what has been said to you due to a hearing impairment. If you can lip-read explain how you cope with this, and also provide details as to how you may need to be alerted that someone is speaking to you e.g. by possibly needing to be tapped on the shoulder or waved to. • Explain if you always need to use large-size text or Braille to understand a simple message. Page 11 also considers getting around safely. This may also apply if you have visual problems: • If your vision varies from day to day, describe what you are like on both a good day, and bad days, and how often bad days occur. • If you are unable to get round a familiar place without someone else, due to sensory impairment, explain this. • If you cannot cross a road safely, without the help of someone else, explain this. • Provide details of any incidents that may have occurred when you have tried to get around, such as bumping into things, or people, getting lost, or incidents with traffic. • Write down if your driving license has been withdrawn due to your sight. Page 12 deals with bladder and bowel management. This is one of the most difficult parts of the questionnaire to complete because the questions are of such a personal nature. Do try to put down as much information as you can: • Bladder incontinence that happens when you are asleep will be ignored, as will minor leakage that can be contained by the use of pads.

• Explain if you use a Stoma, ACE, Peristeen, or catheterise, and provide details regarding any leakage, and how often this happens and IMPORTANTLY – how long it takes you to deal with your continence management. • If you experience bladder or bowel leakage, resulting in you needing to clean and change yourself, explain how often this happens. • If, for the majority of the time, you are at risk of loss of control of your bowel or bladder (leading to extensive evacuation or voiding), if you are not able to reach a toilet quickly enough, explain this. Page 12 also considers staying conscious when awake. This section covers fits, seizures and absences that occur when you are awake. It also includes diabetic hypos: • Explain how often this occurs and what happens to you each time. • If you lose control of your thoughts and actions explain this. PART TWO of the questionnaire deals with Mental, Cognitive and Intellectual functions. This means things like: • Mental illness • Learning difficulties • Head injuries • Neurological conditions, including hydrocephalus. To answer YES to any of the questions, you must be able to do the activity: • Safely • To an acceptable standard • As often as you need to • In a reasonable length of time. Before you start to fill in the questionnaire, make a list of any difficulties your hydrocephalus, or other condition, cause you. Difficulties linked to hydrocephalus can include: • Poor concentration • Poor short-term memory • Problems with processing information • Difficulties with taking in and understanding information • Working under stress • Problems with multi-tasking (doing several things at the same time) • Problems with number work, reading, and understanding • Any problems with vision or perception (how you see things). MAKE A LIST OF ANY OF THE ABOVE DIFFICULTIES, ON PAGE 5 OF THE QUESTIONNAIRE, WHERE IT ASKS YOU HOW YOUR DISABILITY AFFECTS YOU. Page 13 on the form looks at learning how to do tasks. This activity looks at your ability to learn and remember things. If you can learn a task one day, but have forgotten how to do it the next day, you will not be considered to have learnt it: • A moderately complex task may involve three or four steps e.g. using a microwave or using a games console. Write down examples of the kinds of tasks you have problems learning – perhaps ones you have tried to learn recently, but not succeeded at.

Page 13 also looks at awareness of hazards or danger: • Write down if you have seizures and explain why you need someone to supervise you to keep you safe. Mention any accidents that you may have had and list down any injuries. Page 14 looks at starting and finishing tasks. This activity looks at your ability to start and finish tasks without needing prompting by someone else. Examples you could put here include: • Sorting out the laundry, using a washing machine • Dealing with your finances • Making travel arrangements • Write out a shopping list • Remembering to complete a task, such as cooking a meal, or doing the laundry if you are distracted by someone coming to the door, or the telephone ringing. Page 14 asks you about coping with changes. This activity looks at your ability to cope with changes to your daily routine, and considers both planned and unplanned events. This does not mean a simple dislike of changes to your routine and needs you to explain how you cope with any changes. Go into detail about any events that have caused you problems e.g. how you cope if your bus or train failed to turn up on time. How you cope if an appointment is changed with little or no notice. Page 15 looks at going out. This activity DOES NOT look at your ability to use public transport. It looks at how you manage to find your way around, and also includes people who have agoraphobia (the fear of open spaces). • Explain what is likely to happen if you had to go out alone • Give examples of any incidents that may have happened if you have had to go somewhere alone • Explain any difficulties you have had in finding your way around Page 16 asks you about coping with social situations. If you have severe anxiety, panic attacks, agoraphobia or autism, this heading may apply. It can also apply if you have problems in relating to other people. Try and give as much information as you can about what happens when you have to meet with people and what problems you may have with relating to them. The assessment: When you have filled in and returned your questionnaire most people will be asked to attend a face-to-face consultation (also known as the assessment). If you have hydrocephalus and need assistance to make your needs known ENSURE THAT YOU HAVE MADE A REQUEST TO BE ASSESSED BY A MENTAL HEALTH & COGNITIVE CHAMPION. This cannot be arranged on the day of the assessment. You must telephone to arrange this as soon as you get the letter from them. At the face-to-face consultation The healthcare professional may come into the waiting room to meet you. They will ask you how you get about and how you travelled to the assessment. Do make it clear if you need to be dropped off outside of the building, or they may assume that you could manage the distance from a car park.

The assessor will be looking at how you look and behave, how you get up and sit down, move a wheelchair and communicate. They will ask you questions about: • Your daily life, can you wash and dress yourself? • Can you make yourself a meal? Do make it clear if your condition results in you living on microwave meals • How did you get to the assessment? • Do you watch television and which programmes? • Do you go out? • Do you drive a car? They may carry out a brief physical examination. They will also assess how well you can concentrate, answer questions and express yourself, if these things are affected. When you are explaining what you can do, be sure to tell them what help you need and if you need reminding or encouraging to do things. It may help to take someone who knows you well into the assessment. They will not be able to answer for you, but may be able to help you to explain your difficulties. If you are found not to have a limited capability for work you will not be entitled to ESA and your incapacity benefit, income support or SDA will stop. You will receive a telephone call informing you of the decision, asking you if you want to claim jobseeker’s allowance. You will receive a decision letter informing you of the outcome. You may not be able to claim jobseeker’s allowance if you live with your partner and your partner is in paid employment; this depends on how much your partner earns. IMPORTANT: Contributory ESA time limit There is a time limit on the payment of contributory ESA. For anyone placed in the work related activity group contributory ESA is now only payable for a maximum of 12 months. It is very important to check that you have not been placed in this group. If you have been placed in this group, do take urgent advice about challenging the decision to try and be placed in the support group. Challenging the decision You can challenge the decision not to award you ESA, and can also challenge a decision not to put you in the support group, if you have been placed in the work-related activity group. • You can claim JSA while challenging a decision not to award you ESA. You MUST ask DWP to reconsider the decision, within one calendar month of the date on the decision letter • Ask them to send you copies of all the evidence used to make the decision • Ask them not to take any further action until you have had the chance to respond to that evidence • Put your request in writing, as soon as possible, send it to the address on the decision letter and keep a copy for yourself • If you have not received the evidence after two weeks, ring them again • When you receive the evidence, look at where the difference of opinion is and TRY TO GET HELP to set out in writing exactly which scores you disagree with and why. Try and get evidence from a healthcare professional that knows you, or perhaps a social worker, occupational therapist, or a Shine Support and Development Worker, may be able to write a report.

What happens next? The DWP will look at all the evidence you send in. They will either change the decision in your favour, or write back to say that they have been unable to change the decision. In this case, all is not lost, as you now have one month from the date of the decision to lodge an appeal. When you have lodged your appeal you can be paid the basic allowance of ESA, and any appropriate premiums in the case of income-related ESA, until the appeal is decided. If you win the appeal, you will receive the arrears for the additional component that applies to you. You will need to supply DWP with ‘fit notes’ (a medical certificate from your GP) while you are appealing. If you apply for a tribunal hearing, it will be held at a venue as close to your home as possible. It is always best to select to attend an oral hearing, where you can put your case forward in person. If you select to have a paper hearing you will not be able to attend the hearing, and a decision will be made without you being able to challenge the decision in person. November 2014

Disclaimer: Changes in the law after 2014 might affect the accuracy of some of the information. You should always check details regarding your welfare rights with a local advice centre or the Department for Work and Pensions (DWP).

Help us Shine relies on people’s generosity and support so we can help our clients who depend on us for help and advice – people with hydrocephalus, spina bifida, their families and carers. To donate to Shine please visit www.shinecharity.org.uk or call 01733 421329. This information has been produced by Shine’s medical advisers and approved by Shine’s Medical Advisory Committee of senior medical professionals. Shine – Reg Charity No 249338 To see our full range of information sheets and to find out how to donate to Shine please visit www.shinecharity.org.uk