DLA is a gateway to life and opportunity

Securing Disability Living Allowance when she became disabled meant Lisa could get out of her bedroom AND get an Honours Degree.

"My life changed on my 19^th birthday. I went from being top of my class and looking forward to a first class degree, to being trapped in bed by debilitating physical and mental fatigue. After three years of NHS waiting lists, I was diagnosed with ME/CFS.  The diagnosis meant I could apply for Disability Living Allowance (DLA).

The University were relieved when I got DLA, as they could only help me with this recognition. The non-technological support included free parking – even before my Blue Badge – and ensuring my lectures were on the ground floor of buildings where my carer could park directly outside. It enabled me to have a Disabled Student Allowance, providing me with assistive technology to help bridge the gap between my abilities and that of an able student. I completed my degree with a 2.1 Honours, something that would have been impossible without diagnosis and entitlement to DLA.

Back at home, my DLA meant the council – after another three year wait - built a downstairs wet room. This meant I was no longer trapped in my bedroom all day and all night, as I have to be on the same level as the toilet. Being out of my bedroom – even still in my house – has made an amazing difference to my wellbeing.

Finally, the day my DLA letter said the award was indefinite was an amazing day. It meant I didn’t have to go through the constant reminder of my limitations spelled out in a form or told to a stranger. 

It meant that I had financial security, and could plan my future. A basic right."

ESA is a system in crisis

Yet another story suggesting employment opportunities for disabled people were better before the current ESA system. As Vanessa writes, many of us struggle to work because of a fluctuating health condition, not because we can't pick up an empty cardboard box.

"I have been on Incapacity Benefit (IB) on and off for ten years now due to Multiple Sclerosis. During remissions I would go to the Jobcentre and tell them I was thinking of trying work again. I got all the help I needed, there was a back to work scheme with the old government which was really useful. I also took advantage of the Guaranteed Interview scheme which guarantees an interview if you meet the minimum criteria for the job.

I managed to pick jobs I felt I could achieve.

The only problem with MS is I tend to relapse for long periods and the process of coming off and going back on Incapacity Benefit was a nightmare of form filling and Jobcentre Plus interviews. I had hoped the new reforms would make this easier.

Now things are different,  I received a phone call last May to say my migration to Employment and Support Allowance (ESA) was starting and I would get a form to fill in and that it was that simple!

I filled in the Atos ESA50 form completely stumped at some of the ridiculous questions that had no bearing on why I am too unwell to work.

Of course I can lift the "equivalent of a pint of milk"! Crickey if I couldn't that would mean I'd die of thirst unless someone was feeding me.

Of course I can pick up an "empty box". But who needs empty boxes picked up?? Notoriously boxes tend to have stuff in them.

Anyway I've spent nearly a year now with no word from the DWP.  340 days of dreading an envelope to see if I will be pulled in front of some random stranger to see if I'm capable of picking up an empty box.

I can do these things sometimes. And I feel completely judged and guilty...Yes guilty!! When I can do them. But I'm not fit for work."

Getting the right support shouldn't be this hard

Claire has multiple and severe physical and mental health conditions which have left her unable to work since 2004. Her initially successful claim for DLA ended in 2008. But a period of homelessness and lack of access to a GP for proper diagnosis meant she couldn’t renew her claim.

It has taken Claire until May 2013, via two tribunals, worsening health, attempted suicide and a further threat of homelessness, to get to the correct level of support through DLA and ESA. Here is her story of that battle, which took place amid the raft of recent Welfare Reforms.

"Once suitably housed, I applied once more for DLA in 2010 but it took longer than anticipated, and administrative errors by my GP meant I ended up going to Tribunal. Following the tribunal, I was awarded low rate care and mobility.

Fast forward a few years to 2012 as Welfare Reform was taking hold around the UK. I was well aware of the possible changes I was facing. I knew I'd be hit hard. Like everyone else I had heard horror stories and I was very frightened about how I would react. When I last applied for DLA and had to go through a Tribunal my mental health took a very direct hit. I tried to kill myself more than once.

The changes I was facing all fell towards the end of 2012 and were as follows......
• Housing Benefit - I currently rent a ground floor 1 bedroom flat that I moved in to in 2010 following a period of living in unsuitable (due to my health needs) temporary accommodation, I am under 35 and 'just' on low rate care DLA (If on medium rate care the under 35 rule isn't applicable) Due to changes in Housing Benefit rules I learned I was to have my housing benefit cut by £73 a week.
• DLA was up for renewal in 2013. My health had worsened considerably between 2010 and 2012 and I strongly believed I should have been awarded at least medium rate care. When the decision came back that I was still on lowest rate care my life suddenly felt extremely unstable. I lodged an appeal, a very risky move but necessary.
• Migration from Incapacity Benefit to Employment & Support Allowance - I received the forms in late November 2012 and was to ensure forms were back no later than 28 days after date on letter enclosed with the dreaded ESA50.  I apprehensively posted them 7 days before the deadline.

Whilst awaiting the various outcomes of my own Welfare Reform I had to apply for a Discretionary Housing Payment to cover some, if not all, of the £73/week  shortfall. I was awarded a partial award that meant I still have to cover around 80% of the shortfall, not easy on such an already limited income.

I was facing homelessness if I couldn't get situation sorted, there was no way I could live in shared houses because of health issues and I need to have access do my own bathroom amongst other reasons.

In mid March 2013 I received, after much chasing on the phone to DWP, a letter informing me that I would be on ESA in the Support Group category. I didn't have to, thankfully, have a face-to-face assessment at the dreaded local ATOS office. I was very relieved by this outcome as I'm sure you can imagine.

Meanwhile I put in an appeal for a higher rate of DLA care. With help from a wonderful friend, I was able to get the award changed to medium rate care. I received the decision in May 2013. Needless to say I was ecstatic as it meant my full rent would be covered now. My wonderfully patient and supportive landlord was actually the first person I called with the news! He was equally as pleased for me as he didn't want to lose me as a tenant.

Following on from getting award notifications I was informed I would probably be eligible for a further benefit called Severe Disablement Premium linked to ESA. You can only apply if on ESA and on medium or high rate care DLA I applied for it. It meant I would have to change over to income related ESA. Following some issues with mislaid paperwork at DWP I was finally awarded the SDP. It has meant an extra £60 a week.

By getting everything sorted, and undergoing extreme amounts of stress as well dealing with major health problems, life is a bit easier.

Ok so financially things will always be restricted but it's not as restricted as before last year. It's meant I can get to vital hospital appointments and go to hospital in an emergency like I've had to do rather a lot recently. I am able to visit friends and family. I am able to rest assured that my rent is covered and I won't lose the precious roof over my head. I am also able to pay my bills and not hide from every red reminder. It's enabled me to replace clothing that is falling apart.

Basically, by getting what I'm entitled to properly sorted and despite the immense stress, I am able to live as 'normal' a life as is possible (whatever normal is).

I still, despite my benefits situation being ok at the moment, worry about brown envelopes arriving and I always will. It is something we all fear. It shouldn't be like that. It's a very real fear.

The safety net that is the Social Security system is just that, a safety net. Nobody I know that has to claim sickness and disability benefits asked to be sick and disabled. Nobody ever wants to be sick and disabled.

Support helps us to rebuild our lives

Most of the positive stories you sent us about good support are about Disability Living Allowance, not ESA. For Michele's daughter, like for many, DLA and Access to Work prevent her having to claim ESA at all. Yet both schemes are facing cuts.

My daughter has Multiple Sclerosis and when she became disabled she was made redundant from the social charity she worked for at the time. That and the fact that she had become disabled were a terrible shock to her, but the change to her health status enabled her to claim the highest allowance of DLA. This made it possible for her to get a Motability car which enabled her to start rebuilding her life. She started by volunteering for disability information organisations and on the board of other charities in the area where she lives. Without a reliable and adapted vehicle she could not have done that. 

The thought that Motability cars may no longer be available to her is worrying, she now has paid employment as a volunteer development officer which she could not carry out without the car. Additionally she now has a personal assistant paid for by Access to Work, again she could not carry out her work without that help. Although PIP does have a higher rate mobility level, the criteria for qualification for that level are unclear and subject to interpretation. Additionally there is talk about cutting back of Access to Work. Losing either or both supports would effectively reduce her to a benefit recipient rather than a contributor to society.

Support set me free

When work and wages become impossible, support enables participation and hope

Abridged from http://danesfort.nu/bitterlemon/2014/04/dlafreedom 

I have a number of hidden disabilities and for many years I was not overtly disabled. I have since been outed thanks to my need of physical support. It took me two years to get my award, but Disability Living Allowance has been a gateway to freedom for me.  

With a recent flare up that started during Chemotherapy in 2011 I had lost all control and ended up having severe pain and pain-related depression. Add in the other mental health issues of PTSD, SAD and anxiety, and I had become a recluse. My confidence had been kicked in the teeth again and again. At one stage I hadn’t left the house in over nine months, not even to see a medical professional. I started to climb out of the deep pit and then I slid back again. I tried to hide my deterioration and, in a way, made life more difficult for myself.

The awarding of DLA has provided funds to us when I lost my wage so I could afford to put petrol in the car and make that trip to see specialist doctors. They always told me there was no cure. But I know that it is everything else associated with my condition that I am having trouble with, like control, the right to make decisions, to be able to do simple things, the impact on my independence, my ability to contribute to my family, my ability to work. 

I had to come to terms that I could not earn a wage again. I had to come to terms that I would never be gainfully employed in the workplace. DLA gave me the hope that I could retrain. I am still trying to find a way to retrain so I can work from home in a new area that is flexible and adaptive to my physical issues and the ups and downs of managing a chronic long term illness. I know I will never work full time ever again but I can hope and dream of achieving part time work.

My various medical diagnoses do not really express to the rest of the world the impact that this chronic illness has on my identity, my freedom of choice or my freedom to be who I want. DLA has given me a financial buffer to pay for additional costs of transportation when I have attempted to attend university. It has helped in providing hope that I wouldn’t be trapped in the corner dribbling in pain, tanked on medication that makes my mind fuzzy but doesn't stop the pain.

DLA has helped pay for medication. It is going to help pay for dental health treatment after breaking my top molars again thanks to pain spasms. I have been saving up so I can see a dentist.  

Before ESA more sick and disabled people moved into work

Before Employment and Support Allowance there was Incapacity Benefit. 

IB was blamed by politicians for abandoning people on benefits and encouraging malingering. ESA was supposed to get tough on the workshy and give people more support and encouragement to return to work.

Yet on IB, around 25% of people started work within a year of claiming benefits. On ESA and the Work Programme that figure is approximately 5%.

"Eileen" explains how different things were under Incapacity Benefit.:

"The much-maligned Incapacity Benefit kept me alive while giving me the space to explore the possibility of returning to work. I was able to participate in back-to-work programmes on a voluntary basis, which eventually led to a paid job. Later on, I was able to keep my hand in by doing  permitted work, without having to worry about losing my benefit or being threatened with sanctions. Best of all, I was being treated as a responsible adult, not as a child or a malingerer, and felt I had some control over my life."