It’s not easy

The last time I went to see my mother-in-law she was stressed. When I walked into the house, she didn’t look up from the mountain of paperwork which lay around her. She flicked between different bits of paper, muttering under her breath, completely consumed with the task at hand. When she did finally look up, it was not to say hello to me or give her grandchildren cuddles, she looked to her husband and said “How far can Matthew walk?”

Matthew, her son, my brother-in-law, has special needs. He has a rare genetic disorder called “1Q21.1 duplication syndrome”, something which my mother-in-law is a silent carrier of. Matthew has attended special needs schools his entire life and now at the age of 20 years old he is completing a course at college called “Skills for life”. This is to help equip him with some skills so that he can have a reasonably normal life. But we, his family know, that he will never have a normal life. Although he might get a job, he will never have a career. He wants to do his driving test but there is no way he would be safe on the roads. He will be able to move out one day but it will be into sheltered accommodation with care assistants checking in on him 4 times a day to make sure that he hasn’t done himself a mischief. He has no concept of the value of money so my mother-in-law has Power of Attorney over his bank account. He’s not even entitled to a bus pass to get to college.

The actual problems that Matthew has is a long list. He suffers from autism and has limited social skills. He suffers from learning difficulties including reading and writing. He has sleep problems and rarely sleeps for more than a few hours at a time. He has back problems and needs to see a specialist for it. He is being tested for heart problems. His speech is underdeveloped and he studders a lot. He has slight facial deformities.

Despite all of this, we love him deeply. He loves his nieces and nephews, every chance he gets he will play games, build things for them, and watches Peppa Pig for hours just to keep them company. He loves his dogs, Holly and Pepsi, and despite his back problems, he enjoys walking them. It might just be for 5 minutes around the street, but to him that is something to be proud of.

All of this is the reason why I am busting my ass to earn some money, I want to help Matthew because when his parents are too old to care for him, it falls to me. And I sure as Hell am not prepared to let him fall into the hands of care assistants and needing Government support to live. The sad fact is that Matthew will need the assistant of the state in order to survive when he gets older. Having been a community care assistant for years and seeing how these people are treated, it makes me sick. People who have special needs are abandoned in sheltered accommodation with the only contact coming in the form of care assistants who couldn’t give a flying toot about this persons wellbeing. It’s sad and it’s scary for me to think that one day Matthew might be one of these lost souls. So I have a plan. A plan that will ensure that Matthew will always have family close by to help him and will never need a care assistant or that pittance that the government likes to call “Disability Living Allowance”.

That brings me to now. Right now, I can’t afford to put my plan into play so at this moment in time he is relying on his mum to fill out paperwork on his behalf and is required to jump through hoops to get something he is clearly entitled to. Unlike most people, Matthew doesn’t understand what benefits are. His understanding is that you are supposed to work to get money, he doesn’t understand that his condition means that his employment options are limited. His mother is expected to fill out mountains of paperwork for him explaining what his condition is. This isn’t a back injury from a car accident or brain damage from taking drugs, he was born this way, this isn’t a new thing in his life. But still, the social security office demands proof of everything, making putting a claim in for him impossible. My mother-in-law has enough on her plate on a daily basis, Matthew is hard work, so piling on the extra pressure of having non-stop form filling is really getting to her. At the risk of sounding like a brat, it’s not fair. It’s not fair on Matthew, my mother-in-law, or anyone else in the family. We don’t want him to be like this, this wasn’t a choice, but we deal with it. Unfortunately the Government doesn’t see it that way and are determined to make it as difficult as possible for Matthew to get the benefits he is entitled to. Frankly, if I get to put my plan into action, I’ll be giving the Government the middle finger and telling them where they can stick their “help” for those with special needs. That you can be sure of.

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