The mother of a seriously disabled adolescent with a mental age of five is looking at the chance of a year’s delay in receiving her benefits whilst an assessment is carried out to see if her daughter is actually fit for work.

Ellie McDonald, 19, of Eccleshill, is one of only 13 people in the world known to have this rare genetic disorder Chromosome 7 deletion.

Ellie was born with part of a chromosome missing, and is living with only one kidney, 70 percent curvature of the spine, and other conditions, including a tethered spinal cord, that has left her with bowel and bladder paralysis.

Her brain injury means that she has to be tranquilized to sleep each night, she also can’t read or write.

Nevertheless, she has to undergo medical assessments at home to establish that she has a rare genetic disorder, it’s not good enough for the DWP that she only has one kidney, a curvature of the spine, and that she has no control over her bowels and bladder.

After Ellie left school in July of this year. Ellie’s mother, Louise applied for employment support allowance for her daughter.

Ellie’s mother, Louise filled out the relevant forms to say that her daughter was unfit to work, and her GP even sent in a sick note outlining the severity of her disability, but that was not good enough.

It seems that GP’s are not adequate enough to give over information about their patients. What, do the DWP believe that GP’s are lying to their patients, or that the hospital that diagnosed Ellie got it all wrong, and that they are more proficient at diagnosing a disability than the consultant is?

When a consultant or GP has given over information such as this about such a severely disabled child or adult, then that should in fact be good enough, and not questionable. This should be the responsibility of the hospital or GP to supply this information about that person, and it should not be questioned, because it then puts doubt on consultants and GP’s as to whether they are qualified enough, and clearly the DWP believe that they can do a better job than a qualified consultant or GP.

While Ellie has to wait for an assessment to be carried out, it means that her parents are missing out on £200 a month in the employment payment, which means that Ellie is missing out as well.

Apparently there is a six to 12 month backlog to wait for this assessment to be conducted.  Hopefully all the money will be backdated, however, that is beside the point, in the interim Ellie has to go without that money, which could be making her quality of life much better.

Ellie will have to undergo a another medical assessment by the DWP despite undergoing a similar medical check for her when she obtained unconditional disability allowance, which is farcical because clearly if nothing has changed on her disability living allowance, then nothing has changed at all.

It’s very frustrating, because you have to prove everything to the DWP, even if you are in receipt of a benefit that clearly tells them that they are already on a benefit because they are severely disabled, however, they find it so easy to make us prove that disability over and over again, just for sport, and it causes people a huge amount of anxiety.

Ellie can’t do any kind of work, not with all her disabilities and medical conditions, and it’s a disgrace that we have to fight for what we are entitled to. This isn’t somewhat unjust, it’s greatly unjust, and it makes me want to scream because these comedians, we call our government are the spokespeople, and they induce our deprivation.

Ellie relies on everyone for her care, including the government, however, this family has to wait. There is no support for them, and they are now incarcerated in a system that is not fair to anyone.

It’s a bureaucracy that’s gone insane, and it’s a ludicrous state of affairs. The caring part appears to be lacking, particularly when people are losing money that they’re entitled to. Now that’s not only despicable, it’s life-threatening.

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