At the end of June of this year our learning disabled autistic daughter who has a profound developmental delay and behaviours that challenge, has to leave her residential school, where she is currently living, because they can’t manage her needs.
In effect she will be homeless.
The Clinical Commissioning Group have said they will fund her care which will require carers initially so at least she will have someone with her 24 hours a day, but everything else will require benefits.
After initially being refused Employment and Support Allowance, she has been allocated £57 per week. £228 per month from which we’ll have to find her food, rent, electricity, gas, water, clothes and all other utilities which all of us need to live.
This will be subject to reassessment and stands as her only income. Currently it won’t even cover rent. Unless Emily qualifies for more benefits in order to live independently she won’t be able to.
I’ve applied for Personal Independence Payment and a Department of Work and Pensions assessor had to visit with me to prove that I’m her mum. As I was already registered on the system to this address, having claimed her Disability Living Allowance and my carers allowance, it was strange having to prove this but it was just another hurdle in trying to secure her life line benefits.
The extremes of Emily’s behaviours that challenge mean her returning home is too dangerous. She can’t help her condition, she isn’t at fault or to blame and the reality of her not being able to come home is causing me to cry as I write this. It’s the hardest fact we’ve ever had to face.
The system needs a complete over haul. Young women like Emily are human beings who deserve our support and an appreciation of their rights to live independently and safely.
I knew when she was first diagnosed at three years old that Emily would have to face challenges all her life. I didn’t know that the law makers, politicians and those who are in post to protect her, would bring into force a system which drives her into poverty and us into hopelessness.
We’re fighting for her today, as we will everyday. Thoughts of a time when I am no longer here to protect her haunt my days and keep me awake at night.