These notes are intended to assist you to fill in the application form for Personal Independence Payments (PIP) and include information to assist you if you also have sight impairment or hearing loss.
Do seek help to fill in the forms if you feel that you have difficulty in expressing yourself.
You may find that hydrocephalus affects how you do things, and how you think and learn.
For example:
You must be able to carry out all activities:
If you have any reports from Adult Social Care, Occupational Therapists, General Practitioners and Specialists, and/or have a care plan, make a copy to send in with your completed claim form. List any additional documents sent in on page 3 of the forms.
To obtain an award of PIP, your difficulties with daily living activities must occur for more than 50% of the time. If your problems are intermittent, it may be worth keeping a diary to show how often the difficulties arise.
This is a cooked, one-course meal for one person, using fresh ingredients. List any aids used in the kitchen e.g. perching stool, lever taps, kettle tipper, timing devices, etc. Note down any adaptations made to your kitchen, such as a low access sink or adapted equipment. If you are only able to cook food using a microwave oven, provide details as to why you can only do so.
If you need reminding, encouraging or have to have an explanation of when or how to prepare/cook a meal, explain why you need this.
If you have seizures/epilepsy, and are at risk in the kitchen explain that you always need supervision. If you have one sided weakness (hemiplegia) resulting in problems in gripping and holding kitchen utensils, pots and pans, provide details.
If you also have a visual impairment and cannot see at all to cook a meal, explain this.
Explain the things that you cannot do safely, even with help, for risk of scalding or burning. Give details if you are unable to read instructions, recipes, use-by-dates, set dials or see if food is cooked properly. Say what aids you use, such as liquid level indicators or “bumps” on the cooker dials.
This includes drinking. Explain any prompting that you require to ensure that you are eating and drinking. If you also have a sight impairment, explain the help you need to cut up food, or describe where it is located on your plate.
Provide details of any aids you use to ensure that you remember to take your medication e.g. a dosette box or blister packs. Explain about any short-term memory problems and why you need someone to remind you to take medication. Provide details on any side effects of medication. Also mention how effective the medication is and whether your doctor has suggested you keep the dose low, which makes it less effective. Go into detail to provide any information regarding seizures/epilepsy in this section. If you are diabetic, explain any equipment you use to monitor your blood sugar levels.
If you have a recent history of shunt infections/blockages, resulting in you needing urgent medical attention, provide information as to how often this happens and what the consequences would be if you did not have anyone to monitor your health condition.
If you also have a sight impairment, explain if you need help to sort out your tablets. If you use prescribed eye drops, say if you need help to put them in.
If you have injections, say what help is needed in measuring doses and injecting.
If you are at risk of seizures, explain that you require supervision to keep safe when bathing/showering.
If you can wash yourself, but do not realise that you have done this inadequately, and are still not clean, this would be an example of not completing an activity to an acceptable standard.
Provide details of any aids/adaptations you use in the bathroom. If you also have a sight impairment, explain if you need help to adjust shower controls, wash and dry your body and hair, cut your nails, clean your teeth and shave.
Explain if you cannot see your face in a mirror to check that it is clean or if you are unable to see if your hands are clean.
This includes bladder and bowel incontinence, and includes cleaning yourself afterwards. Provide details of any toilet adaptations you may have and any assistance needed from another person.
If you also have a sight impairment you may need to explain the help you require to use a toilet in unfamiliar places, to locate the toilet bowl, use the washbasin, soap and drying machine.
Explain any help you require to clean up accidents.
Provide details of any prompting or assistance you require to be able to select appropriate clothing.
If you have hand/eye co-ordination problems and/ or difficulties with spatial awareness, you may have difficulty in fastening buttons. Explain if you have problems in selecting suitable clothing for weather conditions. If you also have a sight impairment, explain if you have to use Velcro fastenings and why.
Describe the help you need to choose suitable clothing, colour coordinate, fasten shoelaces and buttons, put clothes on correctly, and to know if clothes are clean.
If dressing or undressing takes you up to two and a half times as long as it would for someone without Spina Bifida/Hydrocephalus you should think of yourself as being "Unable to dress or undress at all".
If you have problems with your hearing, and have to use hearing aids, provide full details. If you require assistance to be able to express or understand complex verbal information, in either more than one sentence, or one complicated sentence. Provide as much information as you can.
Explain what assistance you require and also in which situations.
If you also have a sight impairment, explain if you need to have body language described to you and any help you need to know if someone is there to speak to, who you are speaking to, and if they have left so that you do not continue speaking.
If you also have hearing loss, explain any help that you require to be able to understand what is being said and how often this happens.
This means basic written information including signs, symbols and dates, with the aid of spectacles or contact lenses, if used.
If you can read, but have difficulty in taking in and remembering written information/instructions, provide information about this. Provide details about any assistance or prompting you may require to understand basic or complex information.
Provide details of any difficulties you may have in reading and understanding financial information, such as bank statements. If you also have a sight impairment, describe situations where someone has to read something to you.
Explain about the aids you use, such as low-vision aids and magnification software. Accessing information by Braille is not considered as reading, so say if you are a Braille user.
Provide details of any difficulties you may have in understanding body language or establishing relationships, or assistance you may require to interact with other people in a socially acceptable manner.
If you have problems in misreading situations, and need assistance to aid your understanding, provide as much information as you can.
If you also have a sight impairment explain if you need help to identify people in a room, so that you know who you are speaking to, or if you need to be told if someone has joined or left the group. If you also have hearing loss, explain the help you require to hear what is being said and how often this happens.
This includes decisions involving calculating household bills and personal budgets, managing and paying bills, and planning future purchases. Provide as much information as you can, and should you have any written evidence of any financial difficulties you have amassed, consider sending in any paperwork that you may have to show the extent of your difficulties.
If you also have a sight impairment, explain the help you need to read your post, read bills, know what to pay and to whom, and perhaps use coins and notes.
Remember to include further details regarding any other medical conditions or disabilities that result in you having difficulties with daily living tasks.
Provide details of difficulties you may have in following a route on an unfamiliar journey without the help of another person or orientation aid – this is a specialist aid designed to assist disabled people to follow a route safely, and does not include the use of a satellite navigation system.
If you are unable to plan the route of any journey without help, explain why. Provide details of any supervision, prompting or assistance you may need when planning and following a journey.
If you are unable to see or hear, explain any problems you have in crossing roads safely and with locating buildings in new areas. If you have hearing or sight loss and cannot ask for directions in an unfamiliar place, explain why.
If you have one-sided weakness (hemiplegia) in your body, provide information, and explain any mobility aids that you use. Explain how far you can walk without stopping, and the reasons why you need to stop and also how long you stop for.
Do not guess at any distances you feel that you can achieve, before having to stop, ask someone to measure this for you.
Moving around also looks at your ability to move on reasonably level ground outside.
If you have difficulty in judging the speed of oncoming traffic, or judging the depth of kerbs, explain the supervision and assistance you may require to cross a road safely.
Citizen Advice Bureau and Welfare Rights Advisers, available at some Adult Care & Support (Social Services) departments, may also be able to assist you. You will need to telephone to book an appointment.
Every effort has been made to ensure that this information is up to date, however changes in the law over time may affect the accuracy of some content. The information provided does not constitute legal or professional advice. You should always check details regarding your welfare rights with a local advice centre or the Department for Works and Pensions.
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