Monday, 17 January 2011

Submission on DLA Reform - Second Draft

There's less than a month left to run for submissions to the DWP's consultation on DLA reform. The first draft of The Broken of Britain's submission was posted on this forum a few weeks ago. The response has been incredible, with over 100 replies to my call for evidence and ideas. I have compiled this into a second draft which is posted on our forum. I have tried my best to reflect all your views in the document. Even if you were not quoted directly, your evidence did contribute fundamentally and I thank you sincerely. I now need you tell me how I've done, and to criticize it thoroughly.

This second draft of The Broken of Britain's submission to the Public Consultation on DLA reform still requires your input. Being an user-led group, we are interested in everything you have to say, even if you have never been on our blog or forum before. Read what we've written, take bits out, put new bits in, tell us what you like and don't like, and tell us if you disagree with us - we just want to make sure that we're accurately putting your views across.

On testimonies, we still need:

• A paragraph long testimony from DLA claimants who are enabled to work because of DLA
• A paragraph from a claimant who is chronically ill and will not ‘get better’ about why re-testing every few years is a waste of their time
• A paragraph about why you think DLA is fit for purpose
• A paragraph explaining why three rates of Care component is easier to understand than two (i.e. if you have medium care needs, how do you choose?)
• Why renaming the benefit PIP will not change your life
• A paragraph about the barriers to life that you face because of disability or illness?
• A paragraph on ‘[things] about DLA that should stay the same’.
• A paragraph on the main extra costs you face due to disability or illness.
• A paragraph about what would happen to you if you went down from Middle to Lower rate of Care (losing up to £29.85 a week).
• A paragraph about the broad range of specific activities that you consider essential to your life.
• A paragraph on how DWP can appropriately take account of variable and fluctuating conditions

You are welcome to post replies on this blog, on the forum, or to e-mail rhydian@thebrokenofbritain.org


Please help us to submit a document worthy of your support!

9 comments:

Becca_Boot said...

I do not work but my DLA does enable me to stay in education. My dla pays for transport to & from the FE college I attend on a photography course.
It pays for adapted equipment such as pens that do not make my hand cramp up into a claw, a light weight camera that means although my arms are weak I can still participate.
When I am well enough I use a mobility scooter to get around the college and the town it is in, my DLA payed for this.
Without DLA I wouldn't be able to go to college as I wouldn't be able to afford the adaptations I need.

I have a variable & fluctuating disability called complex regional pain syndrome. Some days I cannot walk at all and am wheelchair bound, I have been in the wheelchair for two months consistently. Generally I am like this 18 days a month. Some days I can walk very short distances inside, perhaps 20 yards, these days are about 4 each month. Occasionally I can walk short distances outside perhaps 50 - 100 yards. These are my best days, I've not had a day like this for 4 months, usually I have around 2 a month.
Some days I cannot even get out of bed. These are about 6 each month. These are my worst days.
Even on my very best days I am in severe pain all the time, any movement particularly weight-bearing makes this pain a lot worse
It needs to be clear what circumstance you describe in your application, your worst days or the days which occur most commonly or a different criteria.

The current system uses the phrase "severe discomfort" this needs to be quantified & explained as everyone experiences pain differently. Severe discomfort is not the point where you need to stop an activity, is you are in pain constantly to a high level then you have to continue activity even with "severe discomfort" in my case if I stopped doing things which hurt I would have to stop breathing.

Changing the name of PIP doesn't not change anything except the degree of confusion to the public, disability living allowance is a fairly straightforward name - it's an allowance that helps disabled people with living. Personal independence payments is more ambiguous, people are far more likely to get confused about who & what the benefit is for, thus increasing the stigma received for claiming it.

I hope that's enough.
Becca Xx

Becca_Boot said...

I just sent in a very long comment, I'm not sure if it came through properly, if it didn't then I'll write it out again at a different point.

Rhydian said...

Thanks Becca, did you post it here?

Becca_Boot said...

Yes I did but I guess it didn't come through, however it did on my email so here goes.

I do not work but my DLA does enable me to stay in education. My dla pays for transport to & from the FE college I attend on a photography course.
It pays for adapted equipment such as pens that do not make my hand cramp up into a claw, a light weight camera that means although my arms are weak I can still participate.
When I am well enough I use a mobility scooter to get around the college and the town it is in, my DLA payed for this.
Without DLA I wouldn't be able to go to college as I wouldn't be able to afford the adaptations I need.

I have a variable & fluctuating disability called complex regional pain syndrome. Some days I cannot walk at all and am wheelchair bound, I have been in the wheelchair for two months consistently. Generally I am like this 18 days a month. Some days I can walk very short distances inside, perhaps 20 yards, these days are about 4 each month. Occasionally I can walk short distances outside perhaps 50 - 100 yards. These are my best days, I've not had a day like this for 4 months, usually I have around 2 a month.
Some days I cannot even get out of bed. These are about 6 each month. These are my worst days.
Even on my very best days I am in severe pain all the time, any movement particularly weight-bearing makes this pain a lot worse
It needs to be clear what circumstance you describe in your application, your worst days or the days which occur most commonly or a different criteria.

The current system uses the phrase "severe discomfort" this needs to be quantified & explained as everyone experiences pain differently. Severe discomfort is not the point where you need to stop an activity, is you are in pain constantly to a high level then you have to continue activity even with "severe discomfort" in my case if I stopped doing things which hurt I would have to stop breathing.

Changing the name of PIP doesn't not change anything except the degree of confusion to the public, disability living allowance is a fairly straightforward name - it's an allowance that helps disabled people with living. Personal independence payments is more ambiguous, people are far more likely to get confused about who & what the benefit is for, thus increasing the stigma received for claiming it.

I hope that's enough.
Becca Xx

SamBC said...

Is there some way to send you stuff other than as comments here?

Rhydian said...

you're welcome to email rhydian@thebrokenofbritain.org

liane said...

Rhydian, I see you still need some testimony from someone enabled to work by DLA. I hope this helps.

My name is Liane and I have multiple sclerosis, an incurable, progressive neurological condition. Multiple sclerosis (MS) is the most common disabling neurological condition affecting young adults. Around 100,000 people in the UK have MS. MS is the result of damage to myelin- the protective sheath that surrounds nerve fibres of the central nervous system. When myelin is damaged, this interferes with messages between the brain and other parts of the body. MS is nearly always described as a relapsing remitting condition – meaning that symptoms appear (a relapse), and then fade away, either partially or completely (remission). MS can effect any part of the body. Almost any neurological symptom can appear with the disease, and it often progresses to physical and cognitive disability. Permanent neurological problems often occur, and disability accumulates especially as the disease advances. Research suggests that on average life expectancy of people with MS is lower than that of the general population, by around 10 years.

I get DLA and, without a doubt, it enables me to work full time as a teacher. If my DLA is taken away from me when it is due for renewal in November, I know that I won't be able to continue working full time. I may have to give up the job I love altogether.

DLA pays for my transport to and from work. I can't drive and one of the reasons for this is because MS has made me partially sighted; I am almost blind in one eye due to the repeated attacks of Optic Neuritis that totally blind me about three times a year. My vision fluctuates from day to day; some days it is better than others, but on no day is it enough for me to judge speed or distance properly. My left arm is weak and my left leg has no reflexes left that work, so driving myself is impossible. I can't leave the house on my own because I can't see well enough to cross the road safely. In addition to the blindness, I can't walk very well or very far and standing for even five minutes makes my muscles spasm, resulting in severe pain, which means that getting a bus to work is not an option for me.

I am constantly in pain, from my eye-condition and from my spastic muscles, yet I keep working because I love my job and I would be lost if I couldn't do it anymore.

DLA also helps me to work because it pays for someone to do some of the housework that I can't do. Like I said before, I can't stand for long and my balance is bad so I find doing tasks like ironing very difficult. Cleaning the house takes me ten times as long as 'normal' people and wears me out. I wouldn't have enough energy to work without the help DLA affords me.

Fatigue is another symptom of MS. I take medication for the utterly draining, life sapping fatigue I experience on a daily basis. Even with the medication, I still have to nap every day after work. I put all of my energy into work. I have no social life, don't go out socially, don't drink. I just work and sleep in order to go to work the next day.

DLA makes all the difference in the world to me. Without it, my world would shrink to the size of my house. I would be heartbroken to have to give up the job I love and have worked hard for. The fluctuating nature of MS, and the invisible symptoms that I fight everyday means that any assessment (especially an unfair one, designed to deny people like me) means I will probably appear to be too able to keep my DLA.

What sense does it make to take my DLA, make me have to give up work, stop paying taxes and claim benefit? It makes no sense to me at all.

Rhydian said...

Thank you Liane, this will be very useful. Best wishes :-)

liane said...

You're welcome, Rhydian.

I forgot to add that DLA also helps pay for the prescriptions I need to just function. I need at least three every month, sometimes more. It helps pay for eye tests and glasses I need to be able to see a little better, transport to medical appointments etc.

I also wanted to add that I'm adding this submission because I know there are lots of other people who can't do so, or are too scared of being identified, and perhaps penalised in some way, to do so. I think it's important that those who can speak out, do.