Poland Syndrome and its level of “disability” as a label is something we have struggled with at PIP-UK to get right. On the one hand there is a certain amount of negativity associated with the word and some people feel Poland Syndrome is not sufficiently debilitating to fall into this category. On the other hand receiving some extra funds to enable a child to do things to enhance their confidence or to enable therapy seems plausible.
A letter was written to the Telegraph recently which prompted the debate once more. Take a read
SIR – I was outraged to read that specially adapted homes and payments of Disability Living Allowance (DLA) are given to people who have become obese due to their chosen lifestyle (“Mother and child happy to be fat on benefits”).
My daughter was born with Poland’s syndrome, a rare birth defect characterised by underdevelopment of the chest muscle and hand on one side of the body. She has suffered – and will continue to suffer – a life of corrective surgery. Owing to her condition, she is limited in the type of work she can do and is therefore in receipt of a low income.
The various surgical procedures on her right hand and right chest have left her with chronic pain. Her condition has resulted in a spinal defect which also causes her great pain.
She was told last year that, as she was not sufficiently disabled, her DLA payments would be reduced. This year she was told to re-apply, as DLA is being replaced by another form of benefit payment.
She has also been on the council house waiting list for several years: the cost of her privately rented accommodation, taxes and heating take up the majority of her salary, leaving little for food and clothing.
How can it be right that others, through greed and sloth, get benefit payments far exceeding my daughter’s salary, when she is denied the financial help she so sorely needs?
So what are you thoughts as a parent raising a child with Poland Syndrome or an individual who has Poland Syndrome. What do you think?