ILF receipients explain why people with severe disabilities require extra care funding and what the loss of that funding will mean.
From DPAC and Inclusion London
In the count-down to the Independent Living Fund court case on 13 March, we'll publish on a daily basis individual stories from disabled people affected by the closure of this essential source of independent living support. This follows the powerful testimonies recorded by journalist Kate Belgrave and published by the Guardian.
The ILF was set up in 1988 as a stand-alone fund to which people with severe disabilities could apply for money for added carer hours. That extra money meant that people could afford to pay carers for the help that they needed – round-the-clock, in some cases – to live independent lives. It meant that they didn't have to go into carehomes. But at the end of last year, the government decided to close the fund.
Please circulate the links to the stories and use the campaigns pack to promote the Independent Living Fund campaign as widely as possible. Details can be found here.
Our first story is from Mary Laver (who was an Olympic torch bearer last year):
My love affair with the Independent Living Fund (ILF) started over 25 years ago, – I was just 40 and I am now 65, – when it came into my life, a life that I was existing not living.
Within 12 months of becoming crippled with Rheumatoid Arthritis at the age of 40, I was unable to leave my bed and this remained the case for the next 2 years.
I found myself in a position where I could not bear weight on my legs or feet, and my arms very quickly bent making it impossible to get out of my bed and into my powered wheelchair. My care from social services was very basic at 2 hours per day. All but 2 of my friends deserted me. I watched the seasons change by the reflection in a picture I had on the wall opposite my bed, which by this time, was now in my lounge.
Life was very grim until my social worker told me about the ILF; my love affair was to begin.
Being introduced to the ILF was not easy, my social worker had to fill in a long and complicated form and then we just had to wait for the verdict, yes or no to me getting the ILF, which was a long time coming. Meanwhile I decided to sell my house and buy a bungalow, which I did from my bed, and by the time the ILF was confirmed, the sale had gone through and I was on the move to my new home and my new life with my ILF.
I will not bore you with all the life changes over the past 25 years thanks to the ILF, but I will jump straight to 15th June 2012 at 5.03 pm Newbridge Street, Newcastle and a crowed eagerly awaiting the Olympic Torch to approach because that was the date, time and place that I was to have the greatest honor of my whole life, I was to carry the Olympic Torch in recognition of my charity work. The list is long and you can Google me to find out more, but highlights are I drove my power chair from Lands End to John O’Groats making it into the Guinness Book of Records, which I did for the Royal British Legion, I have spent for the past 22 years, two weeks each year selling poppies, I have been pushed in my manual chair to raise monies for various charities in 16 Great North Runs. The list goes on and none of this would have happened without ILF.
My life does not all revolve around good works. My ILF also enables me to go out for long walks with my two much loved Jack Russell’s, Jack and Molly. My ILF enables me to visit places of interest, to have the freedom to do what I want, when I want, with whom I want. I also use the ILF time for my carer to take me to my hospital and doctor’s appointments.
In all to sum up I would say I lead a life full of challenges and wonderful experiences mixed up with the odd boring moments.
But if I am divorced from my ILF I will be living a life of hell in my beautiful bungalow. My beloved dogs will have to find a new home. My social life will disappear.
How do I know this?
I know because I have seen what my care package would look like without the ILF contribution. Per day, I would receive support for a carer to sleepover, then 1 hour support for lunch, and 1 hour for tea. Per week would be added 7 hours for social activities, 90 minutes for shopping, 45 minutes for housework and 20 minutes ironing, plus 2 support slots of 15 minutes each for showering.
With nothing but a Local Authority care package I would have a future of nothing more than sitting in my wheelchair from quarter to eight in the morning until half past ten at night with only two breaks, at lunch time and at tea time. Without support to go to the toilet between visits from a care assistant I would be wet, so when the care assistant did come for the hour lunch time and tea time would need to be taken to clean me. I would also get a sandwich, a hot drink and be toileted.
At tea time instead of a sandwich I would get a warmed up meal, which would have to be a microwave meal because no time would be allowed in my support package for cooking.
By the time the night staff came on at ten, I would be wet again and need to be washed and changed as well as been given a hot drink and put to bed at half past ten.
Being left wet for so many hours every day would lead to open pressure sores which would need to be treated by a nurse on a regular basis.
My day would be nothing more than me sitting in a wet pad, just being fed and watered, no Jack and Molly to keep me company, and above all no freedom to do anything I wish. My home will be my prison.
Oh except for my 7 hours of social care per week. Well with that I could use it to have one day out of the house per week or I could add 1 hour per day to my lunch or tea time call to make it less rushed.
Being very dramatic, there is a pond at the bottom of my garden and if I were to finally mentally snap, unable to take any more of this appalling care, it would only take a few minutes and all my problems, and that of the government, will be sorted… Or I could get someone to leave my gate open- I cannot do that myself- and a short metro ride would see me on a short pier where I could take a long walk…
The other alternative would be a care home. Would the people who are taking my ILF away care to live in a care home? The pond seems more inviting.
So there you have it, my love affair with the ILF. I will fight with every breath in my body to keep this affair going on.
From DPAC and Inclusion London
In the count-down to the Independent Living Fund court case on 13 March, we'll publish on a daily basis individual stories from disabled people affected by the closure of this essential source of independent living support. This follows the powerful testimonies recorded by journalist Kate Belgrave and published by the Guardian.
The ILF was set up in 1988 as a stand-alone fund to which people with severe disabilities could apply for money for added carer hours. That extra money meant that people could afford to pay carers for the help that they needed – round-the-clock, in some cases – to live independent lives. It meant that they didn't have to go into carehomes. But at the end of last year, the government decided to close the fund.
Please circulate the links to the stories and use the campaigns pack to promote the Independent Living Fund campaign as widely as possible. Details can be found here.
Our first story is from Mary Laver (who was an Olympic torch bearer last year):
My love affair with the Independent Living Fund (ILF) started over 25 years ago, – I was just 40 and I am now 65, – when it came into my life, a life that I was existing not living.Within 12 months of becoming crippled with Rheumatoid Arthritis at the age of 40, I was unable to leave my bed and this remained the case for the next 2 years.
I found myself in a position where I could not bear weight on my legs or feet, and my arms very quickly bent making it impossible to get out of my bed and into my powered wheelchair. My care from social services was very basic at 2 hours per day. All but 2 of my friends deserted me. I watched the seasons change by the reflection in a picture I had on the wall opposite my bed, which by this time, was now in my lounge.
Life was very grim until my social worker told me about the ILF; my love affair was to begin.
Being introduced to the ILF was not easy, my social worker had to fill in a long and complicated form and then we just had to wait for the verdict, yes or no to me getting the ILF, which was a long time coming. Meanwhile I decided to sell my house and buy a bungalow, which I did from my bed, and by the time the ILF was confirmed, the sale had gone through and I was on the move to my new home and my new life with my ILF.
I will not bore you with all the life changes over the past 25 years thanks to the ILF, but I will jump straight to 15th June 2012 at 5.03 pm Newbridge Street, Newcastle and a crowed eagerly awaiting the Olympic Torch to approach because that was the date, time and place that I was to have the greatest honor of my whole life, I was to carry the Olympic Torch in recognition of my charity work. The list is long and you can Google me to find out more, but highlights are I drove my power chair from Lands End to John O’Groats making it into the Guinness Book of Records, which I did for the Royal British Legion, I have spent for the past 22 years, two weeks each year selling poppies, I have been pushed in my manual chair to raise monies for various charities in 16 Great North Runs. The list goes on and none of this would have happened without ILF.
My life does not all revolve around good works. My ILF also enables me to go out for long walks with my two much loved Jack Russell’s, Jack and Molly. My ILF enables me to visit places of interest, to have the freedom to do what I want, when I want, with whom I want. I also use the ILF time for my carer to take me to my hospital and doctor’s appointments.
In all to sum up I would say I lead a life full of challenges and wonderful experiences mixed up with the odd boring moments.
But if I am divorced from my ILF I will be living a life of hell in my beautiful bungalow. My beloved dogs will have to find a new home. My social life will disappear.
How do I know this?
I know because I have seen what my care package would look like without the ILF contribution. Per day, I would receive support for a carer to sleepover, then 1 hour support for lunch, and 1 hour for tea. Per week would be added 7 hours for social activities, 90 minutes for shopping, 45 minutes for housework and 20 minutes ironing, plus 2 support slots of 15 minutes each for showering.
With nothing but a Local Authority care package I would have a future of nothing more than sitting in my wheelchair from quarter to eight in the morning until half past ten at night with only two breaks, at lunch time and at tea time. Without support to go to the toilet between visits from a care assistant I would be wet, so when the care assistant did come for the hour lunch time and tea time would need to be taken to clean me. I would also get a sandwich, a hot drink and be toileted.
At tea time instead of a sandwich I would get a warmed up meal, which would have to be a microwave meal because no time would be allowed in my support package for cooking.
By the time the night staff came on at ten, I would be wet again and need to be washed and changed as well as been given a hot drink and put to bed at half past ten.
Being left wet for so many hours every day would lead to open pressure sores which would need to be treated by a nurse on a regular basis.
My day would be nothing more than me sitting in a wet pad, just being fed and watered, no Jack and Molly to keep me company, and above all no freedom to do anything I wish. My home will be my prison.
Oh except for my 7 hours of social care per week. Well with that I could use it to have one day out of the house per week or I could add 1 hour per day to my lunch or tea time call to make it less rushed.
Being very dramatic, there is a pond at the bottom of my garden and if I were to finally mentally snap, unable to take any more of this appalling care, it would only take a few minutes and all my problems, and that of the government, will be sorted… Or I could get someone to leave my gate open- I cannot do that myself- and a short metro ride would see me on a short pier where I could take a long walk…
The other alternative would be a care home. Would the people who are taking my ILF away care to live in a care home? The pond seems more inviting.
So there you have it, my love affair with the ILF. I will fight with every breath in my body to keep this affair going on.
