500 signatures reached
To: UK Government.
Meet and protect the rights of disabled children, adults and their families.
Funding cuts and politicians voting against reforms have meant his life span has been shortened because local councils cannot afford the equipment our children need.
There are tens of thousands of us around the UK. Whatever your taxes are paying for, it is not for the care, equipment and education of disabled children. Whatever their needs are. You may know a family of a child on the autistic spectrum, a child with a tracheostomy, a child in a chair. They are strong, they’re happy and they seem to cope. Of course we do. We have no choice.
But we are struggling and inwardly screaming because we should not have to fight for the basic human rights of a child in the UK.
We should not have to fight to get them an education, to be the best they can be, we should not have to fight for equipment which would ease their extreme pain.
We should not have to fight for help when our children’s needs are equal to a child in intensive care 24/7.
We should not have to take tablets for anxiety, depression or sleep.
We should not be in overwhelming debt because we cannot pay our bills and cannot work because no one is helping.
We should not feel like there is no way out, like we are in a corner and that the only way our lives will get easier is when our life limited child dies. That the authorities are counting on us not dropping before that happens. We do not, we cannot, because without us our children would cease to exist. This is the truth, this is the reality and our country needs a huge wake up call. Medicine is getting better, more children are surviving with additional needs than ever before. But not if we can’t provide a life for them - they deserve the world, they certainly deserve to have their basic human rights met. They fight to live, they fight to stay with their families. Help me fight to make a difference.
I would like local councils to admit they are poorly funded, that they cannot provide for the children in their charge.
I would like the government to streamline services, stop wasting money on companies chosen to provide a service they are failing to deliver. To ensure every single child has an appropriate place in education, not sat in front of Disney films as a teenager due to a lack of staff.
I would like overall structure and provision to reflect a child’s need UK wide - not dependant on them living in a ‘better funded’ county.
They all need access to appropriate services and the correct equipment. I do not want two years and millions of pounds worth of taxpayers money wasted on an ‘enquiry’ trust me, we can tell them exactly where the problems are. Things do not change even when the flaws are identified. There was a care related enquiry in 2014 and currently a SEND enquiry now. Realise the problems are widespread - of course you as a government are failing families and children from all angles. We want to know how your are going to deal with this holistically. These issues are interlinked. Know that all aspects are failing - provision of care, equipment and education - and come up with a solution. You continue to fail us, their families and worse even after enquires, you continue to fail them. You fail the doctors and nurses who treat them and save their lives. You fail to identify non delivering councils, companies and schools. Even when you do - how do you help? What have you changed? Admit that, then we as parents can start to help you piece together what we do need and what our children deserve.
We need a strong leader for the families of disabled children and adults, to accept, acknowledge that they have failed and accept the challenge to reform how services are funded. To agree to fulfil their role as an ambassador to this group of people and to fight for us for what is needed and what is right.
I am calling for a rapid reform of disability provision as a whole, covering all aspects, all failures, all rights violations and how we can as a country stop failing to provide basic human rights to this group. I believe we may need to start with a minister for disabled people who actually can see and understand where failures have happened and rectify them immediately. I don’t not want my son to be given a school place after his death. I do not want him to have to wait until he’s dying to have a wheelchair which fits him. This needs to happen now.
At any point in their lives, a child or an adult can have additional needs. Please sign this petition, please comment with your own experiences. Together as one group we can affect the change we are all fighting for. As one group we can be heard. We are screaming ‘this is not good enough’ individually - as one group speaking with one voice, someone has to listen.
Why is this important?
I’m a mother, but no one has ever called me mummy.
I’ve resuscitated my child, but I’ve never put a plaster on his knee.
I’ve not been fined for taking my child out of school for a holiday, but I’ve been fighting to get him into school for almost four years.
I’ve gone for months at a time with little sleep - but not with a baby, with a child who stops breathing.
There are no family days out, because there’s nowhere to change my immobile and incontinent teenager.
For four years, I have to sedate my child to travel because his wheelchair doesn’t fit and causes him pain.
I’ve said goodbye more times than I can count - not for a school trip, but because I was told he would die.
Our first community nurse told me to visit a morgue so I could get used to the idea of seeing my son in a freezer.
I was told by a care company manager that if I complained about her staff, she’d ensure my son was put in a home. They were asleep when he wasn’t breathing, they overdosed his medications and they forcibly strapped him down to his own bed to stop them needing to move him.
I’ve had to plan and write down all of the details of my child’s funeral.
We have lost our home, jobs and self esteem - sponging from society, because care and education has not been sufficiently funded to allow us to work - to support our own family.
I was a teacher, I fought for the children of others, I loved my job. Now, I have to fight for my son and his rights, to be his ICU nurse, to try to find time to be his mum when I’m so tired and so sad.
My husband cared for people with MND or dementia, supporting them and their families until the end of their lives. Now he can only support us.
Our lives revolve around keeping our son alive, well and comfortable.
How it will be delivered
In person with my son and family.