The following are sample case studies gathered as part of our contribution to the Disability Benefits Consortium PIP 20m consultation response
Case C
Case H
Case J
Case L
Case N
Case NJ
Case P
Case PT
C
I am physically disabled and have Cerebal Palsy. This affects my walking. I can walk over 20m but not walk 50m repeatedly. I am very concerned that I will lose the higher rate mobility component under PIP. Under the descriptors, only people who cannot walk over 20m repeatedly will get the higher rate. This is obviously a concern to me. I currently receive a car under Motability. This is a huge help to me as it enables me to drive to work, go places, see friends, go to doctor and hospital appointments. If I were to lose Motability, then my independence would be greatly reduced. I would be forced to attempt to catch the bus, which is over 50m away. This would make it extremely difficult for me to get to work. Bus times are not good and trying to walk in bad weather makes it almost impossible. I get tired walking too far, so catching the bus would make me exhausted. Catching the train wouldn't be any better as the station is 2 miles away, meaning I would have to get a taxi, which would be expensive. I also find it difficult getting on trains because of the gap.
I feel the Government have changed the walking distance from 50m to 20m for enhanced mobility, as a cost saving exercise only. They clearly want so many taken off the higher rate so they can save money. However, in the long term it won't save them any money. People who lose the higher rate, will then be dependent on other services. Access to Work, NHS, social care and councils will face bigger costs as people will be using these instead of the higher rate. Meaning more budgets will have to be made, costing the Government more money.
I feel the Government should go back to the walking distance of 50m as it will be fairer and will enable disabled people to live independent lives.
H
The nature of your disability or health problem and if you have physical difficulties moving around.
I have a rheumatological/autoimmune condition with a number of problems including a peripheral neuropathy (nerve damage) and ataxia (poor balance) and muscle weakness. I have very limited stamina and often fall. I can manage short distances -say around the house with minimal aid though I still fall. Outside I would use crutches for short distances but have an electric wheelchair for longer distances.
Whether you can stand and move more than 5 metres, but no further than 20 metres (about the length of 2 double-decker buses)
Or
Whether you can stand and move more than 20 metres, but no further than 50 metres.
I can certainly move more than 5m and whether I can manage more or less than 20m would depend on the day - on a good day it would be closer to 50m but on a bad day I am more or less confined to bed. I could not undertake activity repeatedly even on a good day and am always in pain in my feet.
Whether you currently receive the higher mobility rate of DLA.
I currently receive higher rate mobility (and care) DLA with an indefinite award. I use the money for a Motability car and would really miss this if it was removed.
Whether you think that those who can only move up to 20 meters have any greater or significant practical mobility costs or needs than those who can walk up to 50 metres
I feel strongly that the distinction between 50 and 20 metres in terms of practical day to day needs is an artificial one and that the introduction of a 20m limit would severely penalise a number of individuals who currently receive higher rate mobility.
What would be the impact on your independence, and on those close to you, if your level of mobility support was reduced (this could mean you no longer had access to the Motability scheme for a car, wheelchair or scooter, or were no longer able to pay for taxi journeys)?
I use the money for a Motability car and would really miss this if it was removed. It would have a significant impact on my quality of life if the car was removed.
I hope this is helpful - as I say please let me know if I can do anything further to help you in relation to this.
J
As a result of an accident in 2011, and surgery to replace knee ligaments with donor tissue, I now have osteoarthritis in my left knee, which is rather severe. My right knee, having been overburdened for this time, is now also showing signs of substantial wear. Likewise my hands and shoulders. I now have my left leg braced when awake, and both hands for as much time as possible.
I have large difficultly moving around. I need to use a wheelchair for even getting to the corner of the road, and we are the first/last house in the close. I can walk with my brace and crutches, or rollator about 20 metres, but this is difficult. Without the aids, I cannot walk more than a couple of metres at very most and this is very slow. On very good days, I can walk a few metres before the pain hits hard.
I can stand and move five metres, but no more than 20 metres
I can only stand and move 20 metres with my brace and crutches or rollator, this is when I am not in too much pain.
I know I cannot get the length of the pool I swim in which is 50 metres long, to get to the steam room, even on a good day now – using crutches, which I am allowed to take pool side. So if I cannot complete the distance to do something I love, then I am certain I cannot do it just because!
I currently receive the higher rate of DLA, and I do not know what I would do without my car, on good days it gives me the opportunity to go out, to swim, to visit friends, and once my PA starts tomorrow, I am hoping she will go shopping with me. So I can go and chose our food again.
The costs for walking 20 metres are the same as for moving 50 metres. Very little in this world is within 20 metres of where ever you are right now. Even using the blue badge to park, means that I am not able to get far/anywhere as although these are placed close to places, they are never close enough to enable completing a task. As a simple example, I could not get into the local shop to buy a newspaper from the disabled bay, neither can I walk it as it is a mile away!
The effects on my life would be devastating if I lost my mobility car. My husband and I have just been away for three days to what was billed as a disabled friendly hotel in East Sussex, this was a first for us, and I was able to take my scooter and wheelchair. The hotel was not as accessible as we hoped, and I could not have even got to our room without assistance. The hotel closed a parking space, so I could get my wheelchair to the ramp, and the tight corners to get to our room, were horrific. But we did go. We would not be able to do this again if I lose my car. There are so few cars that I can get into as my leg does not bend well.
L
I have multiple sclerosis and fear that I will be adversely affected by an assessment under the new PIP ruling regarding mobility. My MS symptoms are rarely the same from day to day, so I would ask how my mobility can be assessed properly. Some days I can walk 20 metres reasonably easily and some days I walk with great difficulty. I feel that the decision to alter the threshold from 50 metres to 20 has been made with no consideration for those of us who stand to lose our Higher Rate Mobility Benefit - therefore losing the right to hire a Motability vehicle. My husband and I are pensioners and cannot afford to buy and run a car. The prospect of having no transport is truly frightening.
I have suffered from multiple sclerosis for 24 years and was granted Disability Living Allowance for life. Obviously, this statement means nothing at all, now.
N
I initially confirm that I do receive the higher rate of Disability Living Allowance which has been awarded for an indefinite period, I am currently 62 years of age and retired 2 years ago.
Briefly my health problems consist of arteriosclerosis to the extent that my right femoral and left peroneal arteries are blocked. I also suffer from polycythaemia. I have had this condition since the late 70s and in about 1978 had an arterial repair as a result of an aortic aneurysm and I also required repair to the right femoral artery. In 1983 I developed a further arterial problem in the form of a false aneurysm At the original operation site and required surgery and the implant of a Dacron graft to repair the aorta, right and left iliac arteries and a further repair to the right femoral artery. The polycythaemia means that I have venesections usually every 3 months. In addition to taking medication to deal with high cholesterol and high blood pressure I have been taking warfarin since 1984 and now take cilostazol.
In terms of physical difficulties I can manage to walk down stairs (13 steps) should I immediately turned round to go back upstairs then I suffer claudication before reaching the top. On flat and level ground I can move 39 strides which I calculate to be approximately 25 yards pain-free and can go a similar distance before I have to rest. Walking that distance does leave me somewhat short of breath particularly in cold weather. If I resume walking once the pain has subsided then the distance I can walk reduces each cycle. Normally I can negotiate a small supermarket with the aid of the trolley and of course frequent stops to load things into the trolley but find difficulty in larger shops or shopping centres. Providing it is practical for those longer distances then I use a self propelled wheelchair. Should I attempt to walk to the end of the road in which I live, which I have done twice since August 1988, then I am likely to have some degree of discomfort for the following 2 to 3 days. As part of my ongoing medical care I do have an Ankle Brachial Pressure Index test which indicates that I have approximately 63% circulation in one leg and approximately 56% in the other at these levels I am substantially more susceptible to problems in the event of wounds of any sort being suffered, the last test was done about 3 years ago and I'm due to have the test done again this October. My general feeling is that circulation has deteriorated and I will not be surprised if the tests confirm that.
I am of the opinion that the change from 50 m to 20 m as a test is not a good change in that those who can walk 50 m have very little advantage from the Motability point of view than those who can walk 20 m. I think this is particularly relevant where the walking range is reduced after each rest.
The impact of the changes for myself would be a great reduction in independence and clearly should I lose the ability to access the Motability scheme for a car then I would have to find some way of funding this myself.
I did contact my MP earlier this year regarding the Mobility component of PIP and I feel that he does not understand the reality of changing the tests from those that existed for the Disability Living Allowance.
I should have also added that when the temperature drops in winter my walking range is reduced by approximately 50% and as such walking becomes painful in as little as 25 yards. I would however say that the additional inconvenience is not much more than that having a walking range of twice that distance although perhaps a little extra planning and extra stops are required.
It would be very difficult to switch from using my mobility car to the use of hire cars and taxis. If I were to use hire cars then they would have to be automatics and I have a suspicion that insurance may not be straightforward. The use of taxis for shopping etc would be expensive as Nuneaton where I live has a reducing number of well-known names on the high street and to travel to one of the out-of-town shopping centres or to Coventry or Birmingham would be very expensive. In addition there is the difficulty of getting a wheelchair in and out of taxis.
Since the changes to the criteria was first announced I have looked at all possibilities should I no longer qualify for a mobility car and feel that the only alternative I would have would be to purchase a suitable vehicle myself. The vehicle I currently use is a Ford Focus automatic which I imagine would retail at about £24,000 and of course I would have the additional costs of road fund licence, insurance, repairs, servicing. The use of £24,000 would reduce my investment income by about £600 per annum, road fund licence about £175, insurance I can only guess but say £750, servicing I suspect something in the region of £200 and repairs is a complete unknown. This gives a total of £1725 so I think it would be reasonable to assume that with repairs and replacement of tyres etc I would have to budget for about £2500 or £50 a week.
I retired just over 2 years ago (14th of July 2011) having prior to that been fully employed since leaving education. Since the medical problems were first diagnosed in the 1970s I have always had to seek employment where my employer provided parking at or very close to my place of employment. This unfortunately has meant that I have not always been able to apply for the highest paid positions available which is meant that the medical problem has already had a financial impact on my life. The conditions I have do have an impact on my life expectancy such that on retirement I was able to obtain an enhancement on my annuity of 48%.
I should have also added that when the temperature drops in winter my walking range is reduced by approximately 50% and as such walking becomes painful in as little as 25 yards. I would however say that the additional inconvenience is not much more than that having a walking range of twice that distance although perhaps a little extra planning and extra stops are required.
NJ
As promised please find below a brief account highlighting my concerns regarding the PIP's Assessment 'moving around activity' test and qualifying criteria and my fears for my own future.
Before my career in the Fire-Service I served with distinction in the Royal Marines and worked on offshore oil rigs. At the age of 27 I suffered a spinal-injury at work and was consequently medically-discharged from the service in November 1990, having completed just under 4 years service.
Within 18 months I saw many consultants, private and NHS, in my quest to be pain-free and return to some type of work. Out of desperation I entered into trial spinal-surgery in November 1992, not aware of the risks involved. In fact I was the first person to have this new procedure at the Royal Orthopaedic Hospital, Birmingham. The procedure is no longer used by surgeons.
As well as the operation being a complete failure two consultants advised that the surgery had been totally inappropriate. As a result of the surgery I've remained in severe pain and dependant on opiates for some 20 years. After undergoing treatments for pain management (morphine spinal catheter) I slowly learnt to deal with the effects of chronic pain and nerve-root damage, although life remains extremely difficult and fragile. I should also state that I have never sought compensation for the hospital blunder when a self-closing door swung behind me hitting the metal rods protruding externally out from my spine, due to the debilitating effects of my suffering. Obviously this has compounded problems and caused more financial hardship.
The benefits of Motability:
As a result of the failed surgery I qualified for the higher rate of DLA and claimed motability. The motability scheme immediately improved my life and the lives of my family. In many respects I would go as far to say that the scheme helped save my life at a most difficult stage. Having access to a vehicle also helped my family lead a normal life as possible under very strained conditions. It was not their fault that I ended-up losing my career and being disabled.
Losing good health and a promising career was extremely difficult to accept. Very much depends on the psychological make-up of an individual, their expectations and love of life to fully appreciate what they have lost? Before my injury I lived life to the full and achieved much success in the Royal Marines and Fire-Service and I was certainly not prepared for a life of chronic pain and disability. To help this difficult transition I received several years psychological counselling as part of the pain management programme.
For anybody disabled mobility remains a crucial component to the functioning of normal life. The Motability scheme helps alleviate many stresses associated with vehicle ownership but more importantly helps retain a degree of normality and a sense of security, knowing that you have the means to hold down employment or escape the suffocating effects of becoming isolated and housebound.
MAINTAINING PHYSICAL STRENGTH THROUGH MOBILITY AND PHYSICAL EXERCISE:
The complex nature of Disability affects and restricts people in many different ways:
The current PIPs Assessment criteria appears to pigeon-hole disabled people.
Two people with an identical disability will behave differently and have varying limitations in what they can and can't do. For example, not all paraplegics are able to participate in sport or hold down employment; some disabled people are mentally or physically stronger and more determined to lead fulfilling lives whilst others cope better with the effects of pain and their disability. Some people say their lives improved after becoming disabled which I can understand to some degree.
The PIPs qualifying criteria for claiming the enhanced rate, in my opinion, is penalising many disabled people who may unwittingly understate their limitations or create the wrong impression by coming across too positive or optimistic.
The motability scheme was devised to help those with mobility issues and in most need of support. How is it possible to differentiate between those who can walk 20m in great difficulty with those who can walk 40m in great difficulty? There is no difference. The PIPs test will only discourage many disabled people from walking beyond 20m especially if they stand to lose their only life-line to a better quality of life in the form of motability. The government should be encouraging a positive approach to disability and mobility problems, helping people remain active as possible and continue contributing towards society and the economy.
Assessing disability: Who needs the most support?
a) A wheel chair user can be expected to move a short distance freely and possibly pain-free. Whereas a person suffering a debilitating chronic condition may barely walk 50m at a given time of day or on a good day of the week. Out of these two examples who needs mobility support the most?
The wheel-chair user needs help transporting their wheel chair over longer distances and help in the home. The person with chronic pain may not have the physically strength or ability to continue walking after reaching 30m or worse still have the ability to return home safely? In reality the person with a chronic condition may be less mobile than the wheel-chair user as soon as leaving the home. Obviously, they both need mobility support and would benefit from Motability.
Will a wheel-chair user be penalised if they participate in sport or successfully complete the London marathon? Surely they should be congratulated and encouraged to continue being proactive and leading a healthy life style. The mere fact of owning a motability vehicle encourages and enables someone to remain in much better health. Propelling a wheel-chair or attempting to walk a short distance with the aid of a walking stick contributes to a degree of exercise and is therefore therapeutic for that individual.
b) How can one differentiate between those who can only walk 20m in great pain and those who can only walk 40m but end-up in greater pain? Severe pain and difficulties may develop at any time and at any distance? Pain can be extremely unpredictable in some illnesses. Is it morally acceptable to help the person who can only walk 20m and penalise the person who walks 30m who after all may be a more determined and driven individual? These people are unfairly punished and penalised for simply being determined and positive about their limitations and their desire to function as best as possible.
Under the PIPs assessment test those who struggle to walk 40m in great pain and difficulty may not qualify for the enhanced-rate or may worse still lose their DLA mobility award and Motability vehicle. What will become of that person if they lose this life-line?
Those unfortunate to lose their Motability vehicle will quickly deteriorate mentally and physically, possibly lose employment in some cases and end-up becoming housebound through no fault of their own. Families will most likely fall apart depending on their financial circumstances.
MOTABILITY ENCOURAGES A POSITIVE ATTITUDE & PRO-ACTIVE LIFE STYLE.
Becoming housebound will have negative consequences. Deteriorating health will increase home care costs and burden families already struggling to make ends meet.
Ironically, those who fall into this nightmare scenario may eventually find themselves in a stronger position to qualify for the PIPs mobility enhanced-rate. So, is it all worth it?
BECOMING HOUSEBOUND WILL ACCENTUATE HEALTH PROBLEMS, THUS INCREASING DEMANDS ON LOCAL HEALTH CARE & OVERALL NHS SPENDING.
Conclusion:
The purpose and ethos of Motability is to help support those with mobility needs and promote a positive attitude towards disability. Many athletes in the London Paralympic games may have never competed without the support of Motability, so do we penalise those who are trying to help themselves?
The disabled must be supported by government programmes and encouraged to remain as proactive and independent as possible. Support charities such as Motability offer an incentive to achieve this aim.
Anybody made housebound by the new PIPs s Assessment test will live a depressing and meaningless life. Health care and NHS spending will increase and families will be torn apart by the added strain and lack of financial support.
P
Presently I can stand, with pain and a walking stick. I can walk very slowly for about 40 to 50 metres ( I find that '' half a football pitch'' is easier for people to visualise )
I can not repeat this due to extreme pain, breathlessness and exhaustion. Sitting also cause pain and discomfort.
I receive the higher rate of mobility DLA ( until they find a way to rob me )
I have :-
FibromyalgiaIschaemic Heart Disease
Diabetes 2
Sleep Apnoea
Chronic Cluster Headaches
Hormone Deficiency
Depression
I can see no reason to introduce a new level of 20 meters. Lets be honest, if you can not walk more than 50 meters you are severely disabled. I can only see it as a way to further denigrate, divide and penalise the sick.
At the moment I volunteer for the sick and disabled. I help them through the various hoops and hurdles of claim forms for ESA and DLA. I also accompany many to tribunals for, industrial injury, E.S.A. and D.L.A. and also A.T.O.S medicals.
Without my mobility scheme car this would stop outright as I can not use public transport and taxis would be, financial, out of the question. For me, the organisation I volunteer for and the claimant.
If you require any further information, please contact me.
PT
I would like to offer any help I can. I am practically housebound due to muscle and joint pain from Fibromygelia as well as other health complications.My main concern is that the movement of 20, 50 or any distance does not take into account the amount of pain caused in doing so and the further aggravation of an individuals disability causing further problems down the line. The fact that this needs to be done repeatedly and in a safe manner needs to be emphasised to those completing forms.I am a former Ministry of Defence HEO and worked in the Parliamentary Command Secretariat, dealing with Parliamentary Questions and Enquiries as well as writing press statements and briefings for ministers. I have also worked as an internal consultant and Trainer on Equal Opportunities for the MoD.In short I have some knowledge of how the system works and would like to help.