Slipping Through the Welfare Net by Anna Van Der Post

Is the Disability Living Allowance Fit For Purpose? From the stories I have heard I would have to conclude that for many, the form and selection criteria are heavily biased in favour of people with physical disabilities. As a benefit it frequently fails to accommodate those with mental health problems and developmental problems.

I think the best way to illustrate how often and easily those in severe need slip through the net, is to use a real case. I was given consent to use this, but have changed the names of those involved.

Sean was diagnosed with aspergers and OCD when he was nine years old and the psychiatrist pronounced that he was on the severe end. He lived with his single mother who home educated him as he was unable to cope in a mainstream school and the local authority had no places in their special unit. The mother, Mary, worked part-time so that they were not a burden on the state and despite having a PhD, because she had to be flexible, the jobs she worked were largely menial and low-paid. With a lot of support from her parents they got by but never had any luxuries such as holidays or meals out. When he was about 11 his mother heard about DLA and with the help of a knowledgeable friend she filled in the forms and was awarded medium level DLA for her son. This meant that she was entitled to carer's allowance. Mary explained to me what this meant for her ‘I hadn't realised just how exhausted I had been. I was living on the edge from working, running a house, home educating and trying to meet all my son‘s many complex needs. I had been living in a state of anxiety and tension for years with a constant background of fear over money. His father, who was mentally ill, was unable to give us any and to suddenly receive enough money to enable me to cut down my hours, was a weight off my shoulders. I foolishly began to relax believing that the welfare state really does care for those in need. After years of my family contributing into the tax system at a premium level, it was good to see that when one of their own needed help it was there - how wrong I was‘

When children are 16, their DLA is stopped and they have to reapply for themselves and receive the money into their own accounts. This is fine for someone with a physical disability who has good insights into their limits and are able to identify where they need help and to use the money appropriately. However, many teenagers with mental or developmental disabilities are not able to identify their problem areas and would certainly not be willing to fill in a form about them. This means that they either do not apply, apply but fail to get it or mum has to persuade them to let her do it and risk a huge upset when they read the form before, hopefully, agreeing to sign it. Then there are those rare cases where the child feels they haven't got a problem or that they do not want to give personal information over to the state. In Mary's case her son would not have anything to do with any government funded institutions including Gps, taking exams etc. As her son had grown up, his care needs had actually become more complex and he ironically needed her even more. Here is a list of some of Sean's key problems which she provided on the DLA application form, although most of them were impossible to fit into the form's questions

1. Phobia of biometrics being taken
* so could not use any phone or have a mobile
* Only left the house with a full face balaclava
* Could not go into shops
* Could not go on public transport
* Would avoid talking in public places so may ignore people
* Could not go to school or work due to the fear
* Could not take exams due to the fear
* He would not visit his GP (Gps are often involved in DLA claims but if they haven't seen the claimant cannot help)

2. He had severe sensory sensitivity so
* Couldn't stand the feel of clothes so wore the same shorts and filthy t-shirt all year round
* Hated the smell of soap and detergent so never washed himself or his clothes
* Hated the smell/taste of chlorine so would only drink water he collected from a well (took total of 3 hours a week)
* Opened windows and doors all year round including at night and when it was raining
* Took many man hours of his mum's timer in shopping for clothes and shoes which she had to bring home for him to try and return until she found something he could tolerate
* Would only eat specific brands of food which were available from a myriad of shops (taking his mother hours each week) and because he couldn't plan ahead would often tell her last minute that he needed something that was difficult for her to get.
* Would accept some washing if his mum grated olive oil soap and hand washed/rinsed everything many times

3. Had OCD which meant he wouldn't eat anything his mum cooked so made his own meals

4. Had dreadful trouble organising himself and dsypraxia so after he cooked, Mary had to spend up to 2 hours cleaning the kitchen 2-3 times a day

5. He was nocturnal and made a lot of noise all night so Mary couldn't sleep

6. He went out in the middle of the night in winter in his shorts, broken sandals and T-shirt with no coat, money, phone etc so Mary regularly had to wait up

7. He would only eat game and would not eat any dairy products or replace them with enriched soya milk or plenty of green vegetables so he was severely deficient in many key nutrients

8. Had severe communication problems and tooks language literally and would not engage in small talk. He also interpreted friendly questions as intrusive and would think nothing of saying to a friendly stranger ‘none of your bloody business' or ‘fuck off'

9. He believed that benefits were morally wrong, as they come from tax, which in his black and white sense of the world, is theft. Sean believed that as people are forced to pay their own money against their wishes he would, indirectly, be stealing from them,so although he couldn't work he would not accept any handouts.

Mary spent many hours shopping, cleaning, collecting his water by hand from a stream and taking him places. Sean was not safe to be left alone and made a dreadful mess cooking. He had no sense of danger and left windows open with used kitchen roll pieces left near a lit the hob. Mary tended to get up by 5 in the morning when she knew he was asleep to go to work and to do some of her supermarket shops. She could not hold down a regular job where she would have to be available at the same time and be in a fit state. However, when he was 16 his DLA and her carer's allowance were stopped just before Christmas!

Sean would not agree to apply, so she had to do it behind his back as they couldn't survive without it. Mary duly filled in all the forms (an extremely onerous task and most people have to get an expert to help them) and the DLA was refused. Mary now had only what she earned as a cleaner which amounted to about £30 a week before expenses. She could not get any benefits as she was deemed fit for work even though as a carer she could not work full time or with any consistency. She took it to tribunal and gathered a huge folder of evidence. Mary describes the experience as follows ‘It felt as enormous as a court case, I felt like a criminal and as if no one believed me. I cannot begin to express how emotionally draining and degrading it was to have to go round to everyone who had ever witnessed my son misbehave and ask them to write a statement. It was a huge intrusion into our privacy and I was exhausted and so scared all the time about our lack of money and how on earth I was going to prove our need. Everyday I woke and worried about it and if it hadn't been for my parents I would honestly have killed myself. I have everything I need ready and after this experience I will always be prepared because there is not always help out there as some deluded people believe'. She attended the first tribunal '. I was tired, nervous and unable to think straight and during this first tribunal I couldn't stop crying. It was so degrading and my sobbing was so extreme that it sounded fake to me - they have no idea how close I was to killing myself or walking away - what sort of welfare system is it when an exhausted, dedicated mother is further traumatised, by having to beg and fight a faceless, heartless, obstructive system for a little help.' Unfortunately he DLA had failed to give the panel all the information so it was adjourned. Mary had to go through another long wait, perpetually in a state of incessant anguish and with little money coming in. After a year she finally had to face the tribunal again and said ' I was faced by a panel of three; a judge, a GP and a disability expert. They sat behind a big desk and were cold and professional to begin with. They were clearly starting from the position that I was a benefit fraud and it was up to me to persuade them otherwise‘.

By the end of the tribunal Mary informed me that the panel were very sympathetic but stated that they would have trouble giving her son DLA under the current criteria which was based on

1. Can he dress himself?

2. Can he cook a meal?

Mary could so easily have lied, but she is honest and replied that he could. The fact that he couldn't go our, get shopping, clean up after himself and would have no drinking water or clothes if it were not for her, was irrelevant. The fact that without her, her son would die without any income, food, or water and no friends to call on. The fact that she daily had to cope with his aggression and anxiety, calming him down, all counted for nothing. Her dedication was not acknowledged by the welfare state at all. The panel somehow managed to award him lower rate DLA for three years but this was useless because it did not entitle her to carer's allowance and she would still live in fear about the next time she had to claim. She felt she couldn‘t go through all that again.

Mary could not leave Sean safely alone for long, she spent half her life at least doing things directly for him and she was also too exhausted to work full-time anyway. So Mary was left with nothing and with no means of living. Her elderly parents stepped in and are still, to this day, supporting them financially. This means that their years of working hard are not being used for their own retirement as they had imagined. They can no longer afford holidays and meals out and spent their savings on caring for their daughter and disabled grandchild.. Mary is left feeling ashamed and guilty that she cannot cope. The whole family cannot make sense of how they have all paid huge amounts of tax, seeing it as an insurance cover, fully believing that if they should ever be in need, the state would step in. No one in the family had ever taken benefits.

Well as you can see there are many people who fall through the net and here is a family who has saved the state hundreds of thousands of pounds by home educating their special needs child, a mother who always tried to work, and in her hour of need, she is forsaken. Without the help of her parents, Mary feels she would be left with two options, walk away from her child or commit suicide.

The last government were informed of this case. They were also informed from several sources of the failings of the DLA forms and criteria to assess, acknowledge and meet the needs of those with developmental disorders and their carers. They were good at the rhetoric, making everything sound positive and forward looking But in reality the process fails to assess and award help to a significant minority. There are many, many silent and powerless voices who suffer, excluded from any help. In this case a very vulnerable young man and a single mother who has no options, as there is no one else to share the care, are deserted by a supposedly civilised, compassionate country.