A couple have spoken of their disbelief after just one of their disabled identical twin sons, who both have Downs Syndrome, was granted vital disability benefits while the other was refused. Little Arthur and Alfie, both 10 months old, share the exact same medical conditions and need the same round-the-clock care. But a government ruling has found that only Arthur was entitled to Disability Living Allowance of £76 per month.
Mum Emma Banks-Lowe, 33, said the decision had left her ‘gobsmacked’ because the boys, born just one minute apart, share exactly the same medical issues and require round-the-clock care.
They have identical heart, lung and eye complications and they are expected to have problems walking as they grow older.
After making individual applications for DLA on behalf of the twins Emma and David said they were amazed to find that Arthur had been accepted for support and Alfie had been refused.
Emma, a sports centre supervisor, who has three other children from a previous relationship, said at first she was so shocked she thought there must be a mistake.
She said the only explanation the family has received so far is that the officer who assessed Alfie felt the tot did not need any more support than a normal 10-month-old.
She said: ‘A specialist midwife told me about the help you can apply for, so I sent off two applications for them six weeks ago. The applications were identical, just like them, they had the exact same information on them, I may as well have photocopied the first.
‘I now wish I had put them in the same envelope, but I needed to apply for them separately as individuals.
‘I explained that they each needed 24-hour care, we have at least one hospital appointment each week, physio practice every day with the special equipment needed. They already have specialised chairs and tables at home because I need to carry out the physio on them every day.
‘We also have sensory items and a SATs machine which monitors their breathing during the night. I attached all the proof of this.
‘As they grow, they will obviously need even more care and attention, so the £76 a month would help towards the cost of all that.
‘Two weeks ago I received a letter back regarding Arthur which said he had been accepted to receive the £76 a month towards his care.
I was so adamant that Alfie would get the same result that I actually went into work and told them I could now work part-time because I was then able, with the extra help, take care of my children at home myself, since I know the specialist care and attention they need.
‘But then I got a letter through a couple of days later and I was shocked to read that Alfie had been declined. I was absolutely flabbergasted.
‘How could my two sons, who are identical in every way, not receive the same help? Being accepted for DLA and being registered disabled is essential to ensure you can then continue being supported as they grow up, receiving extra carers and equipment.
‘When they are three-years-old, they won’t be able to walk properly, as they have problems with muscle deficiency, so we may need a disabled blue parking badge to park closer to the shops – it’s these little things that will make a massive difference to our lives.
‘At first Dave laughed it off thinking they must have got confused thinking we were claiming for the same child, since the initials are the same.
‘But when I rang up about Alfie they said he wouldn’t need any more help than any other child his age. What 10-month-old baby needs to have physio every day? We have appointments every week – that is not normal for children of their age.
‘I then told the woman that bizarrely they had accepted my son’s identical twin for the allowance, who had the exact same issues.
‘Her answer was that somebody would call back – within 14 days. She made me feel like I was someone who was ripping off the benefits system or something – we’ve worked every day since we could.
‘It’s not good enough. What worries me is that if it was two children from two separate families, one could be accepted and the other not. It’s a lottery game – the staff are being inconsistent and I want to highlight that issue. They obviously do not go by the same criteria, which is wrong.
‘Alfie actually has more problems than his brother – he has bad eyes and will probably need to wear glasses at a young age.
‘We need a bigger house because there is five kids in here including them. We’re looking for somewhere with a garden so they can play outside.
‘I just want my boys to have the best possible start in life and the same chance to do so. If they don’t develop properly now, then it could really have an effect on their future.
The money would even help towards them going to special nursery classes before they head to school. I’m just so angry about the situation. They are identical twins, born a minute apart.
‘I need to be with them every minute of the day, it’s not easy and it’s just going to get more demanding when they are older. I do find it an absolute pleasure to look after them, but to know the extra help is there would be a relief.
‘I would give anything for my boys. I was told they will always need a carer throughout their entire lives, they will never be able to even cross the road without someone by their side.
‘We only have a three up two down terrace at the moment, but we’ve had an offer. They have affected all aspects of our lives. I’ve had to give up my horse Jess in the last few months because I just don’t have the time anymore to ride her.’
A Department of Work and Pensions spokesperson said that, while it was not possible to comment on specific cases, the claims would be checked to see if they had been assessed correctly.
The spokesman said: ‘Disability Living Allowance isn’t generally paid on the condition someone has, but because they have specific care and mobility needs. All young children have care and mobility needs, but parents can claim DLA for children who need a lot more help or supervision than other children of the same age.
‘Anyone who disagrees with a decision can ask the Department to look at the case again, presenting any new evidence, or appeal.’
Disability charity Scope said the case highlights a ‘shocking’ flaw in the application process.
A spokesman said: ‘It certainly suggests it is a bit of a lottery when you put an application in. If these twins live in the same situation and their care needs are exactly the same then the outcome should have been the same for both boys.
‘The fact that it wasn’t means there was either a blunder here, or different assessors are judging cases differently.’
Disability living allowance is the main benefit for disabled people to help with the extra costs they face as a result of their disabilities.
It was replaced last month for adults with the new Personal Independence Payment, but continues for under-16s.