NOTE: THIS IS WORK IN PROGRESS, AND WILL BE UPDATED REGULARLY OVER THE NEXT FEW WEEKS
PIP is the new Government “pension” for people who are disabled, and replaces the Disability Living Allowance (DLA), from which disabled people pay for any extra costs that arise from their disability.
The change from DLA to PIP has not been handled well by politicians with the result that there has been a lot of controversy about it, and the change has been viewed with dread by most disabled people who are or will have to claim it.
In the following pages we try to analyse a real assessment of a PIP application. We hope that this will help people who have not yet applied, or who are having trouble understanding the decision made afterwards.We also include criticisms of the process, the forms used and the assessments carried out, which we hope will help officials improve the process.
For the people who depend on this type of payment, this is far too important not to try and make it work.
About his case study
Disability has many forms, and no claimant of PIP is typical. The subject of this case study is described as “severely disabled” and his disabilities include both learning and physical disabilities, a mix which would challenge any system designed to test his qualification for PIP. In some cases it appears that the severity of his disability exceeds levels foreseen by those who designed the assessment. The difference between reality and the model used by the designers means that answers given to some questions may be misleading.
The subject was assessed as qualifying for PIP, which is not surprising as he had previously been assessed as qualifying for DLA perpetually. He is a relative of the author
Description of client before assessment. (He is still the same)
Client has severe Downs syndrome, and Autism. He also suffers from asymmetric gait, poor muscle tone and nystagmus. He is registered as partially sighted, and has been prescribed deaf aids in both ears. Because of his behaviour and low levels of stamina he has been supplied with a wheel chair.
the RNIB say: –
“Nystagmus is constant uncontrolled movement of the eyes. The movements are usually side to side but can also be up and down or in a circular motion. Most people with Nystagmus have reduced vision.
When visual pathways or parts of the brain that control this movement don’t develop properly or get damaged later in life, eye movements can become poorly controlled causing Nystagmus.”
His education was entirely in SLD (Severe Learning Difficulties) schools. And he has been assessed as having a mental age of “up to 3”.
Severe Learning Difficulty (SLD): Pupils with severe learning difficulties have significant intellectual or cognitive impairments. This has a major effect on their ability to participate in the school curriculum without support. They may also have difficulties in mobility and co-ordination, communication and perception and the acquisition of self-help skills. Pupils with severe learning difficulties will need support in all areas of the curriculum. They may also require teaching of self-help, independence and social skills. Some pupils may use sign and symbols but most will be able to hold simple conversations. Their attainments may be within the upper P scale range (P4-P8) for much of their school careers (that is below level 1 of the National Curriculum).
(Further information about P scales can be found in Supporting the Target Setting Process, DfES Guidance March 2001. Ref: DfEE 0065/2001)
If a pupil is working at P1i-P3ii in English, then using reading, writing, speaking orlistening performance descriptors would not normally be appropriate. If a pupil is workingabove P3ii in English, then separate performance descriptors (P4-P8) can be given inreading, writing, speaking or listening and an overall English performance descriptoris not expected.
He has had constant antibiotic resistant ear infections for several years, and reacts violently to pain. In the past, this has extended to pulling water pipes off walls, causing flooding, breakage of furniture etc. Water has flowed through the main fuse box when he overflowed a sink. He has blown light bulbs by obsessively playing with light switches. For the last year, he has been spitting compulsively and frequently at all times when he is awake. Social services have assessed him as needing two care assistants at any time that he leaves the home. Car journeys can often be exciting as James tries to communicate with the driver by grabbing their arms, or the controls. He also passes lose bits of shopping etc. For this reason, he always has two adults with him on car journeys, and we also use a specially made safety seat belt clip to make sure that he stays in his seat. (The clip was made by the Cerebra innovation Centre at Swansea University, and can be pulled off in emergency, while blocking the normal release mechanism.)
Downs syndrome is a complex genetic disorder (also described as a trisomy on chromosome 21). This means that every nucleated cell (all those except red blood cells) of his body is affected. In spite of recent advances in genetic science, there are no new treatments for Downs syndrome, and Government policy seems to be to encourage terminations of pregnancy once tests have confirmed a Downs diagnosis. Client was born before any such tests were reliable.
Wikipedia says: –
Down syndrome (DS or DNS), also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is typically associated with physical growth delays, characteristic facial features and mild to moderate intellectual disability.
The direct effect of the third strand of DNA, is that the genes under it cannot be expressed properly, resulting in cells that have a missing function. This reduces the abilities of the person who’s genes are masked in this way. From the severity of his disablement it seems likely that the client has a “long” trisomy which is masking many genes, including those responsibly for site, hearing, nasal sinus formation, muscle tone, gait, learning etc.
Client can neither read, write nor speak, and has no sense of danger, cannot see approaching vehicles, and in unfamiliar places cannot tell the difference between floor tiles and steps. In the past, we have found him standing on a first-floor window ledge quite happily waving off some visitors without any sense that this was unusual. He couldn’t see or fear the drop. In public places, he might walk up to random strangers and hug them (when he is well) if he is ill, he might grab at whatever body part is nearest and pinch hard. On one supermarket trip, a few months ago he got overwhelmed by the crowds and lay down on the floor spitting at the food shelves and wouldn’t stop until he had been manhandled out of the shop, upon which he rapidly calmed down. Since then we have found that the security of a wheelchair helps him.
He needs help to dress in the morning. He has to be given his medicines as he does not know what they are, cannot distinguish one from another, does not like the feel of them in his mouth, cannot count them, and unless made to drink will often chew medicines designed to be swallowed and vice versa. Until he is in the right mood, perhaps an hour after the due time he will spit any medication out. Breakfast can take over an hour even with constant help. Other meals are the same, he often refuses to take his first mouthful until after everyone else has completely finished their meal, whether he is served with everyone else or in a separate room. Persuasion of any kind is counter-productive, and all foods and drinks are treated in the same way. His diet has been assessed as OK by a nutritionist who has monitored his diet over a couple of weeks, and rings periodically to check how he is doing.
He tries to help with household tasks with his helpers, but making his bed (with two helpers) can take over an hour, peeling a potato might take an hour using a special peeler, and with constant prompting. Outside, (with helpers) he will pick up sticks if he thinks that the weather is suitable, but it might take an hour to fill one wheelbarrow, or he might lose interest after a few seconds and insist on returning indoors. His poor stamina limits the time he can spend on any outside task, and the speed that he can walk. His asymmetric gate means that he never runs or jumps. He cannot be left on his own outside as – without realising it, or the danger he could potentially be in – he will get lost.
How he was assessed for the Department of Work and Pensions: –
A low score means that he is fully able. A high score that he cannot perform at the target level.
The scores are as recorded on the PIP.7006 letter
|Test (scored out of)||PIP score||Based on this information|
|Preparing Food (8)||4||
Extra information “I cannot cook at all. Someone prepares all my meals for me. Cooking would be unsafe as I have no awareness of danger. I don’t understand how to use a microwave. I can’t boil a kettle. I can’t use sharp knives to cut things up. Had not finished peeling one potato with a special peeler after half an hour. Can sometimes butter toast that someone else has cooked.
|Eating and Drinking (10)||4||
Extra Information: I have some food cut up as I choke. Someone has to be with me in case I choke. I take an hour to eat a plate of dinner. Our speech therapist has drawn up guidelines for eating and drinking after several events when Heimlich manoeuvre was necessary. Cannot eat rice etc as they are choking hazards.
|Managing your treatments (8)||1||
Extra information: I cannot take any medication on my own.
I do not like swallowing my tablets so I can be very awkward when taking them. All my medication is given to me at the correct times by my parents or carers.
Blood sugar monitor
|Washing and bathing (8)||2||
Extra information: I have to have my bath run for me. I use grab rails to get in and out. I need someone to tell me where to wash, or do it for me. I cannot be left on my own. I need someone to clean my teeth for me, and to shave me. I can’t cut my finger and toe nails, as I cannot control scissors. I have a wet room upstairs, though I prefer to use the bath, but this is used if I have an accident or am sick at night. A podiatrist cuts my toe nails at home.
|Managing your toilet needs (8)||0||
Extra Information: I quite often need help to clean myself. About three times a week I wet my cloths by accident when I am on the toilet. I also have leakage from my bowels on occasions. My carers use a lot of baby wipes to clean me as I spread it up my back when I am trying to wipe myself. About 4 times a year I get a urinary infection, but I cannot tell anyone, so it often takes few days before anyone realizes.
|Dressing and undressing (8)||2||
Extra information: My parents or carers get out my cloths, but sometimes I refuse to put them on, and then they dress me. I can’t do up buttons. I can’t lace up shoes, although that is what the hospital podiatrist has recommended. I wear Velcro fastening shoes, but if a strap becomes unthreaded then I need help to put it back. I mostly like to wear Jogging bottoms, but I also like a shirt and tie. I will often change my shirt two or three times a day, but need help each time to do up buttons etc. I discard clothes all over the house.
Extra information: I have hearing aids, but cannot wear them as I have constant ear infections. I have a communication book, and an i-pad with communication software, but I generally use it just to look at pictures, not to say what I want to do. I get very frustrated when people don’t understand what I want and will grab them, or cough or spit in their faces. I will also pick up things and throw them. I can do some basic signs to communicate some of my needs such as toilet, drink, cake, banana. About twice a week I use my voice to say a word. Mostly I hum, mutter or scream.
Extra information: I cannot read or write. I recognize some signs and symbols in my communication book I need glasses but refuse to wear them as they don’t help very much as I have nystagmus. I am registered as partially sighted.
|Mixing with other people (8)||4||
Extra information: When I go out I need 2- 1 as I may behave inappropriately. I will go up to strangers and grab them or give them a hug. I also lie down in strange places if I feel uncomfortable, such as the aisles of shops, pavements etc. I there are a lot of people in my house I go to my bedroom, otherwise I get very agitated. I can sit still, sometimes for example, at a meeting with social services, but I don’t know what is going on and get fed up and either leave or start picking up and throwing things.
|Making Budgeting decisions(6)||4||
Extra Information: When I go into a shop I will pick up anything that is shiny or sparkles and want it. I have no idea of money. If it is appropriate my carer might buy it for me. I could not handle money as it is meaningless to me.
Comment on scoring system: Apart from the inaccuracies of assessment, this score is statistically meaningless as the total available score for Eating and Drinking, Communicating, and Budgeting have a different base. The different scores appear to relate to skills that are considered basic and those that are considered advanced. To be statistically correct, and to avoid confusion, basic and advanced skills should be treated separately.
Comment on actual scores. Many scores (especially “Managing your treatments ” and “preparing food”) do not seem to relate to the information given.) Perhaps the following, might explain why the client was continually offered credit cards before the banks crashed: –
“How can someone who cannot read, write or speak and who cannot count be 33% good at making budgeting decisions?”
|Test (scored out of)||PIP score||Based on this information|
|Planning and following a journey (12)||12||
Extra Information: Sometimes I ask (by pointing to a picture) to go somewhere. I need 2 people to go with me. In the car I need 2 people because otherwise I will grab the driver to communicate. Often I refuse to go out and lie on the floor. I cannot follow a route without another person. I use a wheelchair in shops otherwise I sit on the floor. I cannot see or hear cars coming and trip on steps or pavements as I have no depth perception.
|Moving around (12)||4||
Extra Information: I cannot go out on my own. Most days I get tired easily and will sit/lie down – anywhere. When going out involves walking I take my wheelchair which my carers push. I get out of the wheelchair when I have had enough sitting down. I need constant supervision as I cannot see dangers, I have no depth perception, kerbs are a problem. Downs syndrome, Autism, Severe learning disabilities, asymmetric gait makes me unsteady. Blood sugar levels make me tire easily. I also have low blood pressure. Kerbs, paving slabs, unfamiliar stairs and steps are all hazards to me and cause me trip or stumble. Nystagmus means that I cannot see oncoming traffic or pedestrians.
Comment on scoring system: Planning a journey seems like an advanced skill compared to Moving Around, so it is odd that planning comes first.
It is not clear how the “Distance you can walk” is interpreted, or even why it is there (for this client at least) as there is no guarantee that he would ever get to any destination, no matter how close. The question suggests that the designer of the form only thought about physical disabilities such as suffered by amputees or people who have paralysed legs. Asthmatics may be able to walk miles on good days, and not be able to go anywhere on bad days, as their problem is entirely due to the oxygenation of the blood and has nothing to do with their basic ability to walk, but for many people asthma can be totally debilitating for a good part of the year.People with learning difficulties are yet are another case, where they may be able to walk , but only in random directions, and never getting to a destination without someone to guide them. The question does not allow for people whose disability is a combination of these types.
Comment on actual scores. Planning a journey: Certainly client could not plan a journey.
Moving Around : Client has functional legs and arms, but low stamina, asthma, asymmetric gait, and mental incapacity for directed action. He can move around in the home and for very short familiar journeys in the garden. But even so all these journeys have a random element, partly caused by poor stamina and partly by his inability to concentrate on achieving any particular aim. In essence, most of his movement is non functional, unless he is directed by a carer. Carers are also needed to protect him from all kinds of dangers from the most trivial to the most obvious and dramatic.
Q15: Additional information
Client has severe learning difficulties and needs constant supervision day and night. He often does not sleep until 1:00am although he usually asks to go to bed before 10:00pm. He then rearranges his room and strips the bed, flicks switches on and off, and gives blood curdling screams. Rescuers are often, but not always, met with a big grin. He starts screaming again at about 6:30am, but then sleeps until 8:00am. Sometimes the screams are genuine and he is in great pain. He is very stubborn and hates taking medications, although he will usually take his routine inhalers. In the last 18months he has lost weight going from 9stone 8pounds to 6 stone 9pounds. He is being monitored by a dietician at the Hospital. He is having high energy/protein drinks to increase his weight. He has constant help from the Severe Behavioural Difficulties specialist at the County Community Learning Disabilities Team, and the Consultant Psychiatrist attached to the team. He has had a CT scan to try to identify the cause of his current problems and it was discovered that his sinuses were not formed properly at birth and were blocked and severely infected. (He is now 33 years old!) He is awaiting exploratory surgery to cure the problem. He is also awaiting an appointment for restorative dentistry.
Client has 2 adult carers by day and night. He cannot be left alone for more than a few minutes.
He enjoys going out to familiar situations, and with his carers, was “volunteering” at a bowling alley, cleaning balls etc. but this has had to stop because of his constant spitting. If he stops spitting, we hope he can return. He goes to Pembroke college Equine Studies department for a half day a week course, and in the summer, he spends the afternoon carriage driving for the disabled.
He likes music, but very loud, otherwise he cannot hear it.
He has to have his blood sugar checked at intervals as it has gone so low that he fainted. He has low blood pressure.
Q15 Additional information (continued)
Q2A Autism diagnosed 2005.
The phenomenon of combined Down’s Syndrome and Autism is a relatively recent discovery, since when it is thought that the Autism develops between the ages of three and seven, but the following list (compiled by The Down Syndrome-Autism Connection) describes many of the client’s behaviours: –
Does not orient to people, Is non-verbal, makes unusual vocalizations, says words , without actual communicative intent, repetitive speech, Stops using speech, signs or other means of communication, Seems happiest playing alone, Exhibits inappropriate laughing or giggling, Lacks imaginative play, prefers repetitive play with objects, Insists on sameness and routine, has great difficulty with transitions Has difficulty understanding gestures and does not use gestures to communicate, e.g. pointing, Shows no real fear of dangers, Appears to be insensitive to pain, May not want to cuddle or hug, Has eating problems– limited foods, textures, etc., Has sleep problems, Exhibits repetitive motions – flapping, twirling, tics, rocking, head, shaking, spinning, twisting the hands at the wrist, Exhibits sustained odd play and inappropriate attachment to objects, Exhibits self-stimulating behaviours (“stimming”), Has meltdowns
Comment: During his “volunteering schemes” the team (client plus carers) are suppose to achieve the same work rate as a normal worker, though in practice the carers do most of the work. However volunteering does provide vital socialisation, and a little “work experience”. Without carers it would be impossible for client to take part in schemes like this.
He strongly objects to most of the medicine regime, and will not take morning medicines from anyone who is in the house before he has his breakfast (This may be 2 hours after he has got out of bed even if offered within minutes of getting dressed.) Generally he will take medicine from anyone coming into the house for the first time in 24 hours between 60 to 90 minutes after getting up – who, it does not matter.
Section 4 -What to do now
Tell us about any help you would need if you have to go to a face-to-face consultation: –
Client would need at least 2 carers with him. It would be extremely distressing for him to attend (please contact Social Worker regarding this) Stairs would be a problem.
The PIP assessments must be a nightmare for assessors who do not have very extensive expertise in all the forms of disability that are relevant, and I have almost as much sympathy for them as for those who may be inadequately assessed at the end of the process. However, while the assessors can go home at the end of the process with lives that are virtually unchanged by it. Those who received the wrong assessment may be put in grave danger, because of subsequent withdrawal of resources that are essential to life.
The following table enlarges on the PIP questions. The comments are an attempt to work towards identifying the vital questions that were not asked in the PIP process. They are also an attempt to identify areas of knowledge that PIP assessors should have before making this type of assessment. They need more work, and I hope to add to this in the next few days.
|Test (scored out of)||PIP score|
|Preparing Food (8)||4||He has no concept of food preparation, He does not know why or how food needs preparation.|
|Eating and Drinking (10)||4||For the client this is the major task of the day. Physically, he can feed himself liquid or soft food, but does not have the manual dexterity to manipulate a knife and fork to cut harder or tougher items. (Even spaghetti must be cut up for him, because although he can cut through it, he cannot understand that if he cuts a strand in half he needs a second cut to make the spaghetti a manageable size.) He cannot cope with other types of food manipulation methods – such as twirling on a fork, or chop sticks. In a “medieval banquet” he even refused to eat cooked food with his fingers, and would not eat until he had been given a knife and fork. At times the physical characteristics of the food (even “favourite items”) are unpleasant in his mouth and he will violently spit it out. The spat items landing 6 ft or more from him. This might first happen with the first mouthful, or half way through a meal. Sometimes he might clear a plate of the same food and ask for more.
Some foods, like mashed potato build up in the top of his mouth (he has a “high dome”) causing him to gag and panic. Rice and similar foods can stick in his throat, blocking his airways and result in the need for rapid performance of the Heimlich manoeuvre (abdominal thrust)
|Managing your treatments (8)||1||Client’s list of (10 different ) medicines was supplied with the original form. Client has no idea what medicines are for, cannot read the instructions, and cannot count out the tablets or extract medicines from the jars. He does know that liquids poured into his ears provide transient comfort, and asks for them at any time of day when his ears are particularly painful. He does not know the difference between an antibiotic ear drop and olive oil and could not safely use either the glass olive oil ear dropper or the antibiotic sprays. His asthma inhalers are a familiar routine, and while he accepts them with good grace in the morning is often resistant at night when he is tired.
He is normally very resistant to tablets or capsules given aurally, and it may take an hour or more of appropriate persuasion before he begins to take his solid medicines. He is better at taking things like liquid painkillers that are flavoured for use by children, but even so may spit them out. This makes it dangerous to use penicillin type antibiotics in liquid form as several family members are allergic to penicillin. At present he will resist taking his morning medicines until someone new comes to the house. It does not matter who, as the successful carer one day may have failed the previous day.
|Washing and bathing (8)||2||He does not like washing, and gets very stressed with the routine. He has smashed up a clothes-horse and laundry basket on separate occasions in the last couple of years. His evening bath is part of his routine. He may ask for it in the morning – several times. After tea, he really wants it, but we have to run the water for him as putting in the plug or turning the taps are beyond him. We must also put in the correct dose of “Oilatum” which he needs as part of his treatment against skin complaints including psoriasis. He will get into the bath in his own time – often an hour after it was first run, although at other times he may become very agitated by any delay. We have to keep checking the water temperature. Once in, he is usually out very quickly unless we stand over him and try to persuade or help him to wash. At others, he will enjoy a soak even when the water has returned to room temperature. When he gets out of the bath he will often put on his pyjamas without drying, so again we have to stand over him, and persuade or help him to dry. At every stage, we must test to see whether persuasion or helping is going to work. A wrong decision can end in total non-cooperation or a violent response. Neither is directed at us personally, but either can last an hour and can result in personal injury even if only because we try to lift a passive “client” from an awkward position or one in which he might hurt himself or others. (There is not usually the option of persuading him to move to a more suitable position first!)|
|Managing your toilet needs (8)||0||He does not go to the toilet when he gets up, and may hold on until midday. He will often react violently to persuasion to use the toilet.
When he needs to go to the toilet he needs to go straight away. He cannot cope with public toilets on his own, so often two of us need to squeeze into a normal WC, when disabled toilets are occupied or not available. He cannot use a urinal, and prefers to sit to urinate. He does not understand that others need privacy.
In disabled toilets, he is fascinated by all the extra facilities, grab handles, disposal bins and emergency chords. (When at a play scheme, years ago, he accidentally called the fire brigade by pushing the glass in an attempt to play with the switch underneath. The noise – and personal associations – of the alarm bells ringing, proved extremely traumatic for one of his friends who was present.)
At home, he can often use the toilet on his own, but even then, may urinate over the rim of the toilet, wetting his clothes. If his faeces are soft, or he has diarrhoea he cannot clean himself, and often he drags faecal material up his back as far as his shoulder blades. If help is not immediately available a lot of it lands up all over the floor, toilet seat, the tank and the wall around the toilet roll holder, and of course can be trodden all over the room and elsewhere.
|Dressing and undressing (8)||2||He is usually helped to dress when he gets up. If not, he often chooses inappropriate clothing or puts clothing on back to front or inside out. He cannot cope with buckles, buttons or cords that need tying. He cannot recognise the heal of his sock, and may pull it half way up his calf, or put the sock on back to front. If a button fronted shirt is put away with only the top button done up he will put it on with the whole collar, still done up behind his head, and will carry on even though the shirt must be very tight under his arms and not covering most of his chest.
He cannot regulate his body temperature so that it is important that he wears appropriate clothing, but he does not know whether he is hot or cold. Often he would chose the opposite clothes to those he needs. He also finds it difficult to assess outside weather conditions or whether he needs a sweater or coat. If he is dry inside, he does not understand that he needs a coat to go outside into the rain. If not reminded, he would go outside in his socks without shoes of any kind. He does not like wearing safety hats to ride his tricycle, although he recognises it as part of the routine. He will ride without it if he thinks that no one has noticed. He cannot do up the safety hat straps without help.
He does not like the feel of wet clothes and will try to change many times a day, even if only a single drop of water has touched his clothes, resulting in a tiny wet patch only a few millimetres across. When he chooses clothes, he will empty many items on the floor or throw them round the room. Some may end up in random places throughout the house. Once the chosen items are on he will often need help to turn them right way out, or do them up.
He often brings pyjamas downstairs at odd times of day, and leave them around the house. At bed time, he will not remember where any of them are, and will go upstairs to fetch yet another pair, but may go and find yet more, before he has his bath.
|Communicating (12)||8||He can neither read, write, count or speak. (The hearing of Downs people is different from the rest of us. While learning phonics, typical children can recognise about 6 sequential parts of each sound, and mentally add these sounds together to build up a phonic sound putting several phonic sounds together to build up a word. People with Downs syndrome hear only four sequential parts of a phonic and so confuse different phonics which makes it difficult to hear words or convert what they hear to speech or writing.) While high achieving Downs people can get over most of this difficulty, the problem increases with the length of the trisomy on chromosome 21 and other complications. This is a case of someone who is severely handicapped (low achieving), and who is also deaf, and with constant ear infections. He can hear conversation as if it is coming through a double-glazed window, and often imitates the sound when he “hums” to himself. He finds speech comforting, but largely meaningless.
He can point at things he wants, or things that he thinks represent the type of thing that he wants. Sometimes when he points at an object or symbol it is not clear whether he wants that thing, or whether he is opening a conversation about something else. Sometimes he is just breaking the silence and announcing his presence.
It is not always obvious when he is offered a choice of two things and points at one, that that is the one that he wants. He might point at it because he likes the colour, or some other feature of it, but he really wants to eat / play with / wear the other.
Client is a good communicator (of his most basic needs and wants) with people who know him, and are used to these complications. But others might find it difficult to understand him.
He is good at recognising emotions in others and is a sympathetic nurse /carer to those he knows, and as far as he is able. At times his efforts at comforting his patient may be overenthusiastic, though very well meant.
|Reading (8)||4||Client cannot read. See above note on phonics. Nystagmus and short sight are also problems.|
While I am engaged in this project we are learning about the PIP process all the time. I have already commented on the different scoring base for each question but I have discovered something even more shocking.
We already know that the maximum possible score varies for each question, (e.g. The maximum score for preparing food is 8 points, while Eating and Drinking is 10, presumably because the loss of the ability to feed oneself is more important than the loss of ability to cook. While it is reasonable that there is a hierarchy to the assessment system, the grouping of questions without regard to the hierarchy, so that adjacent questions are given different weights is bound to cause confusion, and one wonders whether anyone has proof read the forms, or if they have what was the motive for allowing them to be used in this confusing manner. Conventionally the questions would all be marked to the same base, and then a properly explained correction applied further down the “report form”, or the questions would be divided up into “basic skills” and “advanced skills”.
But the new discovery is to do with the scoring on the question about “Managing your treatments (8)”. Although this is scored out of 8 points we are told that no one gets more than 2 points. So someone whose management of medicine is so bad that they are regularly taken to hospital to have their stomach pumped would still be scored in a way that suggests that their ability to handle medicines is 25% that of the ability of a fully qualified doctor! But that is not the worst bit of this wheeze. The qualification for being paid PIP is the total score achieved from all the questions, that is 33 for “daily living” of which you must gain over a certain threshold, say 28 points. But the maximum number of points that you can actually get is only 27 points, so in this scenario everyone fails, however disabled you are.
PROBLEMS IDENTIFIED AND POSSIBLE SOLUTIONS
The form clearly mixes basic and advanced skills which is why several questions are scored differently. This is a simple mistake to make, and is well known to produce false results as some people will misinterpret the status of particular questions. If the scoring is by humans then they may also make mistakes because of the mixing of basic and advanced skills and the different weight to be giving to each point awarded.(Familiarity with a bad scoring system is no help when scorers are working under pressure.)
It also makes it difficult to interpret the results as people will assume that each question answered has equal weight, when in fact it does not. People who do not realise how the scoring system works (and this would include many of the most deserving cases among those with learning difficulties or mental health problems) may not appeal when they should, while some who do not qualify may be able beat the system, by taking advantage of the scoring system.
Some very basic questions were not asked, and this gave rise to invalid answers being given to some of the questions that were asked. For example, if the first question asked for a particular skill is “do you need aids” and the answer is “no”, then the scorer might correctly award no points at all. However if, before the question about needing aids, there had been a question like “do you understand the need for that particular skill”, and the answer was “no”, then the scorer might understand why the question about aids was answered with “no” and full points might be awarded.
It was disgraceful that full points could not be awarded for managing medication, as being unable to do so could be fatal in many cases. Clearly those who cannot administer their own medicines safely must have help. There can be no question about that. It seems that part of the reason for the dangerous way that points are awarded in this area is that the designers of the form have confused medicine and therapy, and combined them under the heading of medication – an American catch-all expression which is itself fairly meaningless. The authorities should consider separating medicines from therapies, and applying the potential for full points to each. But even here there is likely to be confusion as I know one person who has exhausted all available physiotherapies, but still has to carry out recommend exercises, at their own expense, nearly every day of the week. In the client’s case, no therapies seem to be applicable, although if he did not have congenital learning difficulties, anyone else with his physical problems would also be having treatment almost every day. And how do dialysis patients fit into the picture?
To solve the problem of form design and scoring, the authorities need to take a serious look at the full range of disabilities that people have. Having done that they then need to decide if it is appropriate to make one form fit all types of disability. It is very difficult to imagine how one form could cover sensory loss, loss of use of limbs and learning difficulty at the same time. But this form seems to cover long term and terminal medical conditions as well.
Having decided on which disabilities are to be covered, then the form needs to be set out as a decision tree, so question 1 must be about the type of disability with a link to appropriate basic questions for that type of disability. So question one might say “if you have a learning difficulty go to section A”, if sensory impairment “go to section B” etc. Section A might have questions about understanding the need for basic skills, like preparing food, washing etc. Following that there would be questions about aids. In sensory impairment the first question might be “do you have any sight”, “are you registered blind or partially sighted”, and then “do you use aids like sticks, radar, spectacles, or optical spectacles” etc. In that way officials can build up a verifiable idea of the ability of a claimant that can be cross checked with medical or social service records. IT should allow more genuine claimants to get the help that they need and weed out those who make false claims.etc. With a clearer form and a simpler scoring system, appeals could made on errors of fact, not errors of interpretation.
Later questions can still be about more advanced skills like planning a journey or cooking, perhaps even owning and driving cars, as some very severely disabled people can do fantastic things if the appropriate treatments and technology are available to help them. Sadly some disabilities have no treatments of technologies to help them, and none appear to be likely, and these are the people who need most help. But most people who are made disabled during their lives, or who are born disabled, suffer a period, often of several years either of intensive treatment, or “waiting until they get used to or grow into it”, and this is a time of great need as well.
People who have genetic disorders will never get well. Technology or gene therapy may help eventually, especially if they are suffering a condition caused by a single gene. But even they are likely to have periods of greater disability between courses of therapy, or when newer technology leap frogs their condition, and the their favoured technology is phased out. Disability, even for those fortunate enough to receive a “cure” never completely goes away. But many genetically based disabilities that are based on multiple genes will probably never be “cured”, and will rely on many types of technology, that will be unlikely ever to be at the same phase of development at the same time, so that what seems like a great help one week, will be unavailable in a month or a years time. These technologies are expensive to produce, and as markets become saturated, manufacturers lose interest. For the most vulnerable people there is a constant and confusing cycle of technological and commercial advance and retreat, that will make them forever disabled.