By Lynne

Back in September of 2015, I wrote about how my daughter, who suffers from dwarfism, had lost her Disability Living Allowance when she turned 16 and had been refused any help under the Personal Independence Payment, usually known as PIP. You can read the original article at:

http://rbs.postach.io/post/too-much-to-ask

I was devastated by this news, not to mention the severe financial impact it had on me and my family. Not only did we lose the Motability car we needed to help my daughter get around, I also had my Carer’s Allowance stopped because the DWP had decided my daughter was not disabled and so did not require any care.

Fortunately for me, there are some caring people who were prepared to help me take on the DWP. My MP, Hannah Bardell, quickly got on the case and she and her assistant, marcus Woods, contacted the DWP several times. Marcus also advised me that my daughter should have been classed as disabled under the Equality Act 2010 and should have been entitled to some transitional arrangements while moving from DLA to PIP. Needless to say, the DWP did nothing about this. As you might expect, they were also very uncooperative and their responses to my MP always avoided answering the main questions they were asked.

As for the actual decision, the DWP awarded my daughter 6 points for Care Needs and 4 points for Mobility, neither of which was enough to give her any financial support. When they were challenged on this, they claimed that the ATOS nurse had carried out a musculoskeletal examination of my daughter but this never happened. The ATOS nurse merely asked questions and observed my daughter’s movements. Her alleged examination consisted of asking my daughter to stand up in the living room and take two steps. Nevertheless, there were some alarming discrepancies between what the ATOS nurse reported from her very limited observations and what the DWP Decision Maker wrote. For example, the Decision Maker told my daughter:

"The musculoskeletal examination carried out and also the observations made at your consultation did not indicate that you have any significant impairment of your upper or lower limbs, spinal flexion, manual dexterity or grip."

However what the nurse actually reported to the DWP was:

"She requires the use of aids to manage this activity reliably which is consistent with symptoms of her achodroplaysia. informal observations showed she struggled to get on and off the couch and that her limbs were visibly shorter and MSO showed movements were slow."

She continued:

"Functional history shows she uses a stool and her parents help her into shower and lay out what she needs. Medical history shows she is shorter than 4 Foot and had visibly shorter limbs and MSO showed her shoulder abduction was reduced and movements were slow."

As an aside, it was interesting that the so-called experts managed to spell achondroplasia incorrectly throughout their reports.

The DWP’s decision seemed utterly bizarre since anyone who is not blind can see that my daughter’s arms are only half the length of fully grown arms, as the ATOS nurse confirmed in writing. However, this complete disregard for the medical facts did help us prove the deficiency of the DWP’s decision when we went to the Appeal hearing.

More on the Appeal later. When it came to the actual process, my local Council’s Advice Shop were brilliant in helping us complete the appeal form and also provided someone to help represent us at the hearing.

However, I still needed to do a lot of work myself. I obtained a written report from our GP, detailing my daughter’s problems, along with a Diagnosis Sheet from her back specialist and an Advice & Information note from the Restricted Growth Association which detailed all the issues people suffering from dwarfism can experience.

The Appeal was heard on Tuesday 12th January and it was quite an ordeal. Without me being there and without the Support Worker from the Advice Shop, it would have been terrifying for my daughter as she faced questions from a panel of three men, one of whom was a doctor. He fired lots of questions at her in a manner she found quite intimidating. Maybe he was just trying to do a thorough job of understanding all the issues she faces but she was very nervous under his questioning. It was particularly embarrassing and degrading for a sixteen year old disabled girl to have to explain to three middle-aged men about the problems she has when taking a bath or shower or when going to the toilet. It’s not an experience many adults would like to face and I know my daughter would never have coped if we had not been there to support her.

Fortunately, my daughter’s disability is so obvious and we had produced so much medical evidence and had demonstrated the complete inadequacy of the assessment that the panel overturned the initial decision. Instead of being awarded 6 points on the PIP Care component, she was awarded 14 points, enough to qualify for the Higher Rate. She was also awarded 8 points for Mobility, giving her the Standard Rate which wasn’t what we’d hoped for but is an awful lot better than the 4 points and no Benefit awarded initially.

So things have, after more than three very stressful months, worked out pretty well. I’ll even be able to claim my Carer’s Allowance again which will be a great help. I am so grateful to everyone who helped us through this pretty dreadful experience but that’s the main thing I’d like people to take from this story; that it is a dreadful experience. People with real physical disabilities are being penalised by faceless bureaucrats who make decisions that are totally at odds with the medical evidence. We’ve been very fortunate because there are plenty of other people who are being refused any assistance from the DWP despite having very real problems.

The Appeal process itself is a real ordeal. You need to fight every step of the way and gather together as much medical evidence as you can. It’s hard, hard work and, without the support of people like my MP and her assistant, our GP and especially the Council’s Advice Shop, we would never have managed to get this far. And that’s the real issue here. What used to be regarded as normal, compassionate care for the least able in our society has become a grudging benefit that needs to be fought for. Is that really the sort of society we want?