Dear Sirs
I am writing in response to the consultation about the mobility component of PIP.
I HAD UNDERSTOOD THAT PIP WAS TO ENHANCE PERSONAL INDEPENDENCE AND THUS MAKE IT MORE LIKELY THAT RECIPIENTS WILL BE ABLE TO CARE FOR THEMSELVES RATHER THAN RELYING ON OTHERS.
The PIP/DLA component for getting around needs to be what it says - a MOBILITY component not a WALKING component.
What is lacking in the current criteria is a category for people who can stand and walk but are immobilised by medical conditions and cannot walk to the shops or use public transport without putting themselves in severe danger. Without mobility payments they are effectively housebound and unemployable.
My own teenage daughter is a case in point.
She has neurological and cardiovascular conditions including Postural Orthostatic Tachycardia Syndrome and dysautonomia (as a result of Ehlers Danlos Syndrome) which make it dangerously unsafe and therefore impossible for her to travel by tube or bus or to walk long distances. A 24 hour heart rate monitor produced what her Consultant described as a 'scary' reading when she attempted to walk a couple of hundred yards.
She currently has a Statement of Special Educational Need which includes transport - the Local Authority take her to, from & between classes - without which she could not attend. They wouldn't do this if it was non essential.
When the Statement of Special Educational Need ends she will be housebound as I'm an OAP on council tax benefit and in failing health - I am not able practically or financially to provide for her transport needs. Her only way of going to university would be if she was awarded the higher rate mobility component so that she could get a Motability car or use taxis. Without this award her education will end when the Statement of Special Educational Need ends - and her many undoubted talents will be wasted. She will be housebound and unemployable and will become dangerously depressed and an increasing benefits drain on the public purse.
To provide her with the higher rate mobility component of DLA/PIP would mean that she could continue her studies and make herself employable. She will only ever be able to do work which requires minimal physical exertion and that means using brain power not physical ability - this requires a university education.
It would cost the country far far less to provide her with a mobility payment and therefore make her educable and employable than for her to stay at home and spend the rest of her life on invalidity / incapacity benefits.
Please look again at the question of MOBILITY payments for people with ME / CFS and cardiovascular problems and dysautonomia who would be unsafe on public transport and who therefore need an enhanced MOBILITY payment if they are to be facilitated to make themselves independent and/or educable / employable.
Yours
Jan Loxley Blount
TCert., Dip Child Development.
I am writing in response to the consultation about the mobility component of PIP.
I HAD UNDERSTOOD THAT PIP WAS TO ENHANCE PERSONAL INDEPENDENCE AND THUS MAKE IT MORE LIKELY THAT RECIPIENTS WILL BE ABLE TO CARE FOR THEMSELVES RATHER THAN RELYING ON OTHERS.
The PIP/DLA component for getting around needs to be what it says - a MOBILITY component not a WALKING component.
What is lacking in the current criteria is a category for people who can stand and walk but are immobilised by medical conditions and cannot walk to the shops or use public transport without putting themselves in severe danger. Without mobility payments they are effectively housebound and unemployable.
My own teenage daughter is a case in point.
She has neurological and cardiovascular conditions including Postural Orthostatic Tachycardia Syndrome and dysautonomia (as a result of Ehlers Danlos Syndrome) which make it dangerously unsafe and therefore impossible for her to travel by tube or bus or to walk long distances. A 24 hour heart rate monitor produced what her Consultant described as a 'scary' reading when she attempted to walk a couple of hundred yards.
She currently has a Statement of Special Educational Need which includes transport - the Local Authority take her to, from & between classes - without which she could not attend. They wouldn't do this if it was non essential.
When the Statement of Special Educational Need ends she will be housebound as I'm an OAP on council tax benefit and in failing health - I am not able practically or financially to provide for her transport needs. Her only way of going to university would be if she was awarded the higher rate mobility component so that she could get a Motability car or use taxis. Without this award her education will end when the Statement of Special Educational Need ends - and her many undoubted talents will be wasted. She will be housebound and unemployable and will become dangerously depressed and an increasing benefits drain on the public purse.
To provide her with the higher rate mobility component of DLA/PIP would mean that she could continue her studies and make herself employable. She will only ever be able to do work which requires minimal physical exertion and that means using brain power not physical ability - this requires a university education.
It would cost the country far far less to provide her with a mobility payment and therefore make her educable and employable than for her to stay at home and spend the rest of her life on invalidity / incapacity benefits.
Please look again at the question of MOBILITY payments for people with ME / CFS and cardiovascular problems and dysautonomia who would be unsafe on public transport and who therefore need an enhanced MOBILITY payment if they are to be facilitated to make themselves independent and/or educable / employable.
Yours
Jan Loxley Blount
TCert., Dip Child Development.
Dysautonomia
The primary symptoms present in patients with dysautonomia are:
- Excessive fatigue
- Excessive thirst (polydipsia)
- Lightheadedness, dizziness or vertigo
- Feelings of anxiety or panic (not mentally induced)
- Rapid heart rate or slow heart rate
- Orthostatic hypotension, sometimes resulting in syncope[1] (fainting)
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