IF THIS WERE HAPPENING TO MAINSTREAM KIDS, THERE WOULD BE UPROAR

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Imagine a world where your child does not have their basic needs met at school. You turn up one day and the staff explain, very politely and regrettably, that they cannot do what your child needs today. Would you smile back? Say that’s okay? Leave your child anyway and head off to home / work as normal? This is what the parents of disabled kids are expected to do every day.

Imagine that your child is told to stop communicating. The books are all removed from the library. The next day, there are no pens. You are reassured that the pens will be provided but only once every 6 weeks. The school does not have budget for your child to be able to communicate or learn. Core equipment, an eye gaze which allows children to communicate through eye movements, or an iPad which provides a voice for so many – not funded because there is no money.

Just imagine your child after lunch being told to sit in a corner and not take part in the class. Observe, yes. Take part, no chance. You see, there is only funding for a part time 1-2-1. Even if your child happens to have medical challenges or a lack of safety awareness, well we will take our chances rather than overspend. After all, it’s okay in the morning and that will have to be good enough.

Now, your child’s feet have grown. Clarks is available to you (other shoe shops are available) but not for at least 6 weeks. You have to squeeze your child’s feet into shoes for at least 6 weeks and by the way, you need to attend 3 appointments, all at short notice, in the middle of the day and parking costs £6 a go. Oh and be grateful you don’t have to pay for the shoes.

Imagine that you start work at 8.30am and go to drop your child at breakfast club to be told that it does not exist. Not only that, but there is no childcare at all available around school hours. In the holidays you might be offered 1 day a week – school hours only of course.

Children with different abilities will have (usually after a long fight) either a statement of needs or what is now an Education, Health and Care Plan (EHCP). This outlines the needs of each child and forms a legal requirement for provision. Unfortunately, there are 2 major issues. Firstly, the true needs of a child are rarely properly documented leaving gaps. Secondly, even when the needs are documented, they are not always provided. Parents will fight for the correct provision and as a result are labelled as ‘difficult’ or ‘tiger parents’.

My daughter has an undiagnosed genetic condition – known as a Swan. (Syndromes Without a Name). I have therefore become one of the ‘difficult parents’ who is continuously fighting for the basic needs of my child to be provided. I don’t want to be difficult and neither do others, but we do want to be heard. Britain in 2016 needs to think differently and we need you to help us shout it out.

If you would like to help please feel free to RT to the following people:

@PennyMordauntMP (Minister for the Disabled)

@EHRCChair (Chair of Equalities and Human Rights Commission)

@Sajidjavid (Minister for Local Government and Communities)

@JustineGreening (Minister for Equalities)

 

17 thoughts on “IF THIS WERE HAPPENING TO MAINSTREAM KIDS, THERE WOULD BE UPROAR

  1. I am sorry you feel your school is not helping your daughter…I dont feel this is by any means a nationwide problem. I work as as a LSA and I give 100% to ensure I meet the targets for the child I work with we certainly look at every need of the child and ensure the parents can work with us to reach full potential with the child

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    1. I’m afraid the issue is more widespread than you realise.
      YOU may give 100% and for that I appear you, but in my experience of caring for my own 3 special needs children find it is a full time battle to get their needs met at school and in wrap around care and I know I’m not alone in this.

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      1. janet keal i wish it was like this around the world. you sound wonderful. you are an exception not a rule. and thats around the world not just in your country. where i live we are fighting just to have our childs dissability recognised let alone supported.

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  2. I am pleased to hear you don’t have a problem where you are – unfortunately a lot of SN parents I speak to, have to continually fight for basic support in school and other areas. I would never question the commitment or efforts of the people involved in caring for GG, however they are often limited by the resources available to them. Many thanks for commenting.

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  3. No child should be denied the right to be heard, to learn and grow, to be included without excuses without exception, period. It should be non negotiable.

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  4. Janet Keal,
    It is great to read that you are one of the rare people who are willing to give all. Wish we could have more people like you willing to provide everything a child needs. Unfortunately, providing everything a swan needs is a rarity in the nation. Most undiagnosed and diagnosed invisible disabilities are lacking the support needed, especially funding, in the schools.
    I have a son with autism and major sensory issues and I have had to fight constantly for his rights. He has a chewy that he uses and even in school I had to fight to let him have it. He’s also nonverbal and the teacher only was goimg to give it to him when he needed it. Umm…he can’t speak so how was he suppose to tell the teacher he needed it? He is also learning to use pecs on his ipad at home, I can only imagine the fight I am going have to endure to get that allowed in the school he’s in now.

    Thank you for this article. Well written and informative. Hopefully this will bring more awareness of this growing problem. Pretty sad that the kids who need the most help are the ones who are being denied the help they need.

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  5. Be proud of your Tiger status and keep fighting – I am sure you may already know this but always write a letter in writing (not email) to the school governor responsible for SEN as that way the school have to file it along with their response – quote as much relevant legislation – because the dreaded Ofsted will check as part of their audit process – it’s amazing what the threat of a down-graded status can poke a school into providing

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  6. Reported twice to social services by people who couldn’t teach my daughter and referd to parenting classes lol . We have a physio who has never got a pull to stand . A OT that refused to asses fine motor skills and put everything down to sensory and a slt that doesn’t know how to engage with my daughter because her intervention is poor . All these lot get paid for this yet it’s never crossed their mind to pay my daughter . Endless demands placed on a family doing their jobs . Not a chance would I ever leave my daughter anywhere where they can’t or refuse to meet her needs .

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