PIP for adults who have spina bifida

These notes are intended to assist you to fill in the application form for Personal Independence Payments (PIP).

Do seek help to fill in the forms, if you feel that you have difficulty in expressing your needs.

You must be able to carry out all of the activities safely, to an acceptable standard, repeatedly and in a reasonable time – this is no more than twice the time that a person without a disability would normally take to complete the activity.

If you have any reports from Adult Social Care, Occupational Therapists, General Practitioners and Specialists, and/or a care plan, make a copy and send them in with your completed application form, list any reports sent in on page 3 of the form.

 

Preparing and cooking food

This is a cooked, one-course meal for one person, using fresh ingredients. Do ensure that you make it clear that when you have mobility problems, resulting in you requiring to use a wheelchair or crutches at all times in the kitchen, that you have difficulty in carrying or lifting anything hot at /or above waist height. Explain if you have impaired feeling in your legs and that there is a risk of burning yourself if you spill any hot liquid onto your legs; provide details of how often this happens. List any aids used in the kitchen e.g. perching stool, lever taps, kettle tipper etc. Note down any adaptations made to your kitchen, such as a low-access sink or adapted equipment.

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 have a visual impairment and cannot see at all to cook a meal, explain this.

 

Taking nutrition

This includes drinking. Do explain if you have impaired kidney function, and need to be prompted to take on adequate fluids to preserve your kidney function.

 

Managing therapy/monitoring a health condition

Include any information regarding any assistance that you require to carry out physiotherapy exercises, how often, and how long this takes. Provide details of epilepsy/seizures in this section. If you have diabetes, explain any equipment you use to monitor your blood sugar levels. If you have a recent history of pressure sores, explain where they are and the assistance that you need to monitor your skin and to provide treatment to the sores.

 

Washing and bathing

Provide details of any equipment, adaptations or assistance you may have to use to transfer in and out of a bath/shower. Explain if you have impaired feeling below your waist, if you require anyone to check the water temperature to allow you to bathe safely. 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. You should also draw attention to the fact if you cannot get into or out of a bath or shower without assistance.

If you are at risk of seizures explain that you require supervision to keep safe when bathing/ showering.

If you have a sight impairment, 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.

 

Managing toilet needs or incontinence

This includes bladder and bowel incontinence, and includes cleaning yourself afterwards. Provide information of any toilet adaptations you may have, and any assistance you may need to transfer on and off the toilet or deal with any clothing.

Provide information about the number of times you have to dress/undress or change your clothing to enable you to manage your toilet needs. Explain any incontinence pads you use, how you catheterise or use any collecting devices, such as stoma bags, or if you use Peristeen or an ACE. Include any assistance that you require to manage your toilet needs.

Time how long it takes you to empty your bladder/ bowels – do not guess how long this takes. If you have a recent history of bladder infections due to difficulties in maintaining a hygienic environment, provide details.

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.

 

Dressing and undressing

Explain if you are unable to stand up unaided, any assistance you require to dress/undress, and which garments you need assistance with. If it takes you much longer to get dressed, time how long this takes and include this information – do not guess at the time taken. Do not forget to include information about any help you require with orthopaedic footwear and appliances. If you also have a sight impairment, explain if you have to use Velcro fastenings and why.

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".

 

Communicating verbally

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.

 

Reading and understanding signs, symbols and words

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.

 

Engaging with other people face to face

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.

 

Making budgeting decisions

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.

 

Planning and following journeys

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.

 

Moving around

Ensure that you make it clear if you are unable to stand upright, either aided by an appliance or aid, or unaided. Go into detail about any aids that you use to move around, including a wheelchair, crutches, walking stick, callipers, and explain how far you can move without stopping and why you need to stop.

Moving around looks at your ability to move on reasonably level ground outside. Explain any difficulties you may have in coping with kerbs. Do not guess at any distances you feel that you can achieve, before having to stop – ask someone to measure this for you.

 

Other help available

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.