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Venting frustration- my daughter's ECHP experiences

parksyparksy Member Posts: 19 Listener
edited July 2018 in Parents and carers
I would like to vent my anger and frustration at how wrong the education authorities new EHCP can go. My story is a long and painful one. If for any reason what I have to say is found offensive or not allowed then please ask and I will remove it. My daughter was born with severe brittle asthma and a lung disease, up until the age of 10 she spent most of her life in and out of hospital, roughly 2 weeks of every month was spent on hospital, she had always been what I called quirky unfortunately her primary school called this asd. As well as putting in the paperwork for her Sen they also got her tested for as d however as she couldn't complete the process as she was to I'll they decided there was no problem. When she was sick we had a tutor come to the house when she was well she went to school. When she was 8 she watched the little girl in the hospital bed next to her pass away, this was the beginning of a downward spiral that has yet to end. When she moved up to secondary school things got much worse, she became more stressed and anxious as the first year went on, then she dropped the bombshell, someone at school kept touching her, she asked them to stop we even spoke to several members of staff asking them to do something, they didnt. She was happy through the summer holiday but in the first day of second year she sobbed on the way to school, after the same problems happening for about a month my daughter became aggressive and started running away from school, which for her was very dangerous as she can stop breathing. My hubby had enough and threatened a ta to do something about this boy or i will. They phoned me and told me they did a risk assessment and found him to be extremely high risk so he had to have a constant one to one...... So did my daughter, guess what ,they paired them up. This is a school with a specialist unit! My daughter broke and I had a blazing row with the headmaster, I ended up going to the police who advised me to keep her out of school as they cannot ensure her safety, the police didn't believe us at first neither did the gp  who after speaking with the headmaster provided us with a sick note preventing my daughter going back, by this time my daughter was self harming and talking about suicide, camhs have never done anything to help, she was reffered to them by doctors, consultants, schools and even the police who turned up because she called someone to say she was going to commit suicide. The education authority decided to put her in hospital school, the previous school then contacted the hospital school and told them my daughter was a liar and that nothing happened, she was promptly told to leave hospital school, they didn't want someone like her there, she was happy there.the education authority did nothing. I started getting threatening letters from the first school demanding she attend all the whole denying anything happened, the police cautioned the boy and him and his siblings were removed from their home. My daughter wasn't a liar. After nearly 2 years out of school my daughter started a new school, they knew about her last but kept it quiet for her sake, they provided the one to one support she needed, she started there just as she started her gcse, she had had no annual review since the first year in the first secondary school. The final year as she was building up to her gcse her one to one kept having time off sick, I would go to collect her only to find her sitting in a room with anybody doing crosswords, I contacted the EA  to ask for advice and was told numerous times, sorry she doesn't have a case worker! She did her exams but as her final year was so hit and miss she didn't do so well. We went to the 6th form evening and was told by the year head that no she cannot stay, just don't bother were his exact words, I contacted the EA again only to be told that somebody had applied to our local college on her behalf and she had been accepted, I told them she wouldn't be able to cope with it as by this time she had severe anxiety, and social phobias, still no camhs assistance, they suggested a small outdoor college, we went and it looked great, they agreed to all the ehcp. Just before my daughter was due to start they changed their mind and started saying they couldn't do this that and the other. Contacted EA again. Sorry she still has no case worker, there is nothing we can do. I approached a local comprehensive who have a as d unit, they agreed to take her so that she could read sit her gcse, they agreed to her ehcp, by this time she still hasn't had an annual review since the first year. She was happy to start with but is soon became apparent that the school were not doing anything in her ehcp,she was supposed to remain with her group at all times however they told her to go to a classroom in her own in the other side of the school to do her gcse english, the rest of her group were doing functional skills, she started having massive panic attacks and couldn't even enter the room so they said she could stay in her group in the functional skills room and they would have a ta  take gcse work in the room to do on a one to one basis, they  did this once. I started giving her work to take in to English and they had a go at her, told her that I'm not her teacher, they still didn't give her at work.  she had several severe attacks which I had to go to the school to help her get through because there was nobody around and the school locked her nebulizer away. I contacted the EA, still the same no case worker and they didn't even know she was attending the school, the woman i spoke to had no idea what to do. I asked for a list of other places she could attend and was told, oh look it up online, it's on direct gov! That was it. I told the school that i was contacting the EA and got ignored, then came an email saying she was banned from taking part in anything as it wasn't in her Ehcp, they said as she couldn't do the coursework without the trips so they would just print her of something online(certificate) then they started harassing her to apply for college, she said my mum has contacted them and was told off, it's not for your mum to do, you need to go there. Well as far as I am aware it is actually their job to do the transitions.then my daughter refused to go back, this was in may, this is by far not all of the incidence that occured. She went in to sit her gcse english and what a mess that was, nobody was there ta wise, I had to speak to the envidulator myself because they didn't know she needed to have medication at hand, it didn't go well, they then put her in for a functional skills maths test when she hadn't even had the lessons! I have just been to a meeting at the college where I was told that sorry we can't accommodate her this late, the school should have started the process in november, we have no staff left to provide the care she needs. So now I we are stuffed, no placement for her, if she waits until next year for college then she looses her ehcp. The ehc p officer at the college was speechless as we told him what was going on, my daughter will be 18 in a couple of months, we have had no annual review since she was 12, she has no officer at the EA, we have no idea what to do it where to go for help and they just keep telling us sorry I don't know what to say. The very worst part is that my daughter received funding for 35 hours of one to one care a week through the high care officer at the EA. My daughter has lost all faith in adults who say they will help, in education full stop. As far as I am concerned the new EHCP are not worth the paper they are written on

Replies

  • GeoarkGeoark Community champion, Scope Volunteer Posts: 1,292 Disability Gamechanger
    Hello @parksy and welcome to the community.

    I am really sorry to hear all the problems your daughter has been through. My best advice to you is to contact IPSEA https://www.ipsea.org.uk/contact-ipsea they will be able to go through all this with you and let you know what your options are.

    As far as I am aware as long as your daughter's special needs remain the ECHP should last until she is 25. IPSEA will be able to help you to get this enforced 

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • parksyparksy Member Posts: 19 Listener
    What I meant by loosing her ehc p is that if she takes a year out of school because she has no placement to go to them her ehc p ends
  • FightTheGoodFightFightTheGoodFight Member Posts: 1 Listener
    parksy,

    can only agree that try ipsea, i wont go into my families asd statement/ehcp story as so long, suffice to say everything is with a fight, and transition from statement to ehcp wasnt easy as our education authority thought they would have fun cutting and pasting without a thought to its meaning of the content and that our lives as a famiy depended on it being clear.  Advice is use your ipad as a tool, you have access to information previously not for your eyes when everthing was paper and analogue.  I quite often find when searching, government bodies own handbook pdfs on their working guidelines.

    I wholeheartedly mean this when I say I understand, but also I know you have it in you to be stubborn for your child, however old.  Turning 16 for our son doesnt present the same milestones as he would non asd but we endeavour to embrace them and act accordingly in his best interests.  I cried when the lady had granted me as my sons appointee, not the way life is supposed to go for him and my family, but as long as we fight with everything to keep them happy we can move forward.

    I wish you luck, never give up, I have managed with my family to pull the education authority to task over transport which still fails to be a compulsory inclusion in the ehcp, and managed another year with current taxi situation that works so well for us despite tbeir auditors and procurement proceedures, stuff we do not want or care to hear about when our son faces the possibility of regressing from not being comfortable with his necessary start of the school day.  

    Fight, challenge everything.  Losing school years, isolation, being the problem, been their done it, bought the tshirt.  So worn this tshirt of mine it is now grey and threadbare, but it has, LISTEN TO ME, IM AN ASD PARENT, AND IM NOT GOING AWAY on it, only ever went up the education hierarchy to get myself heard,

    Go on show them you arent to be messed with.  Very annoyed they have let you down continually over the years, their booklets and guidelines and appeals never help the parents.  I registered just to answer this.  Keep well and believe in yourself, it is quite clear you love your daughter to the detriment of your own sanity, no doubt at times, take a step back, prepare notes or things you can arm youselves and and  tackle them ready, be clear you wont give up, unfortunately I understood all the abbreviations you. have used, which education love to use and had left me in ignorance, alas no longer, our family is a force to be reckoned with when it comes to our son.

    Keep well and good luck

    HPH
  • mikehughescqmikehughescq Member - under moderation Posts: 4,849 Disability Gamechanger
    I’ll echo the above posts. IPSEA all the way but, also, get some advice on EA10. You’ll find it an enormous help.
  • parksyparksy Member Posts: 19 Listener
    Unfortunately I have tried IPSEA and all their appointments are fully booked until the end of August beginning of September which doesn't help me much right now
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