EHCPs – our reality!

Before my disabled son came into my life I was blissfully unaware of all the difficulties some parents have in getting their children’s needs met.

I assumed that the right wheelchairs were provided when needed.
I assumed that the right school places were available.
I assumed therapy needs were met.

Then along came Adam!

You might have heard it said that the hardest thing about having a disabled child isn’t caring for them, but fighting the battles to ensure that their needs are met by the appropriate services. It is true!

Many years ago, when Adam was at nursery, we started the process of getting him a Statement of Special Educational Needs, the legal document to ensure his needs were met. It took 19 months from start to finish and he ended up starting school without having a Statement in place.

The process left us baffled, emotionally battered and exhausted. Our child had huge and pretty obvious disabilities, yet we had been faced with an enormous battle to get support in the classroom. When it was this hard to get a Statement for a child who could not sit unaided, speak properly, feed himself or take himself to the toilet, it left us wondering how on earth parents of children with less physically obvious disabilities managed to get through the process at all.

Fast forward 7 – 8 years to the new process, the Education and Health Care Plan, supposedly streamlined and “person centred”, with a target of delivering a finalised EHCP within 20 weeks.

We started the process in March 2016. We are now in September 2017 and it has not yet been finalised.

Eighteen months so far.

To be “fair” they did try to issue an EHCP, but not getting his name right was just the start of the issues with that one!

We are now almost there! It is almost agreed. Yet one important therapy provision isn’t included in it because “it is standard practise that SLT (speech and language therapy) ceases once a child leaves primary school.” So, completely not based on need! Do I argue and delay it further? Or do I accept that I just can’t battle everything? Maybe the time and energy spent battling could be better spent finding a private speech and language therapist? I just don’t have the energy right now to take on another battle and Adam needs his EHCP to be finalised so that the right support can be put in place.

When you have a disabled child there often seems to be an emotional “cost” to getting support. Sometimes it is intrusion into your personal life or the stress of attending meetings or proving why your child needs more than three nappies a day or that a particular brand harms your child’s skin.

On this occasion, to get the rest of the support needed, that “cost” is going to be losing speech therapy and wondering if I have done the right thing.

I have done my best. I have attended too many meetings, I have written too many letters, I have cried too many times, I have lost too much sleep and I have used time and energy that I could have been spending with my son.

And that is the biggest “cost” to any parent.

 

10 thoughts on “EHCPs – our reality!

  1. Dear Cape-less Crusader

    Do not give up the fight as the world needs you to raise this issue above the barrier, this is from one warrior mum to another.
    Your son has the same right to treatment in this country as everyone else, just because his needs are different does not mean the NHS has a less statutory duty to provide them to him.
    he is not the sum of his disability he is not disabled just differently abled.
    Our son met the criteria for Continuing health care for 27 years after the NHS though medical negligence caused his brain damage. in 2008 this was started being removed from him by Swansea health board and then we had a flawed multi-diciplininary meeting 21st March 2009 which removed everything from him. Do not go down the private road as if they think they can get away with this they will. what parent would let their son deteriorate so they can come in and say well he is bed ridden now doubly incontinent contracted up to a foetal position and his life would now be limited as he can sit in his chair.
    The NHS was set up to provide health care free at the point of access where did it say that after 27 years that he should pay out the £110,000,00 we have paid since 2008. We are running out of money and time for our son mothers and fathers of disabled children, young adults and the elderly we need to come together as we are more easily to deal with on our own its time we fought back using every scrap of information we all hold and pass it onto each other. look at Angela Shermans book of How To Get The NHS To Pay For Care: e-book
    Let the joined up carers share our information with each other and bring to account an NHS which is chosing to hit the least able in society

    Welsh dragon mum belching fire and brimstone

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    1. Thank you!

      My ire and brimstone s being taken up with holding two other places to account right now. And I desperately need the rest of the provision in place.

      I will have a look at that book. Thank you.xxx

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  2. He’s no longer in primary school because there is no primary school provision that even comes close to providing him with what he needs! He’s still in primary education though.
    I don’t really know how the ECHP process works, is it reviewed each year? Can you accept what they’re suggesting now, for the sake of getting it in place ‘quickly’ (although 18 months is far from quick), and then battle for the speech therapy in a year’s time?
    It makes me angry that instead of looking at the individual situation, all ‘they’ seem to see is the cost to them of providing the services. No mention of the enormous amount of money you’re saving them by home educating – it must be massively expensive to have a child with Adam’s needs in a school.

    Liked by 1 person

  3. Get what you can in place. Take some time to breath, to rest. SALT can still be fought for even if EHCP in place. The service is shocking. My son has a learning disability linked to his struggles with language, has difficulties pronouncing some words and a possible lisp and even with being in a specialist school, we can’t get any SALT support. The whole system is in disarray.

    Liked by 1 person

    1. Thank you. It has been a stressful eighteen months for me, and many people have been in touch saying they have had similar experiences. So wrong.

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      1. I can imagine, I have a sister that has gone through this as well, her autistic daughter who is now 15 and it is disheartening to hear that things have to be so complicated or have not got any better. Going through the process of whether my son needs additional support at school or not, and so far it has been uphill battle leaving us with more questions than answers

        Liked by 1 person

        1. It is soul destroying. And even once you get it in place, you have to stay completely on top of things to make sure it gets followed.

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