Guest Posted November 8, 2009 Posted November 8, 2009 I wonder if there is any one who can help me? I am currently a reception teacher, however I am writing this post on behalf of my son. He has significant learning difficulties, which are primarily a result of a 'syndrome' he has been diagnosed with. I should also point out that at the age of 3 years, he is still unable to walk (although he can crawl) or speak. He is due to start school in September of 2010 and I am in real sticky situation that I don't know how to solve. He currently attends a mainstream nursery, and I have been lucky enough to secure funding for him for 5 afternoons a week for 1:1 support. The nursery is not in our borough, in the next, as this is where he grandparents live and they take him forwards and back to nursery, and the school I would like him to go to is also in their borough, but mine will not fund him to attend (and in fact they are with holding the money for his 1:1 assistant and she is currently being paid out of the units SEN budget) He will not be able to progress in a mainstream school, he needs the expertise of teachers in a specail needs school, however, our local school will not admit him without a statement and we have been told we will not get one as he is making progress, regardless of how small it is. I don't know what to do? I have been advised to 'fight' the descision for the statement, however, we have been told this could take up to 18 months and it is likely he will not get it. I have done some investigating fo schools, with specailist units, and I made initial enquires, however, the nearest one to us is 20 miles away and he would not recieve help with transport as he won't have a statement - which means I have to give up a job that I love to take him back and forth to school - sorry if that sounds harsh, I love him dearly and would do anything to help him but I have spoken to 8 professionals this week, one of which put the phone down on me because 'it was my problem to sort', and none have been able to give me any advice, except to say that getting a statement is going to be a struggle. I am due to fill in my request for a school in January and don't have a clue - if there is anyone who can help I would be really really grateful. Nicky
AnonyMouse_4544 Posted November 8, 2009 Posted November 8, 2009 It's still a bit of a lottery depending where you live - in my LA it is very difficult and highly unusual for a child to be funded fulltime 1-1 I suggest you contact IPSEA - http://www.ipsea.org.uk/ good luck x
AnonyMouse_15046 Posted November 8, 2009 Posted November 8, 2009 Oh Nicky you sound like you are having a really hard time with this. Have you had any support from your local parent partnership service? This sounds like exactly what they are there for. IPSEA looks like a good place to go too. It does not sound harsh that you are reluctant to give up a job you love. You are clearly a very loving parent and you want what is best for him and your family. I don't quite understand how your local school can refuse to admit him without a statement. Surely that is against the DDA? I'm sure there will be more people with good advice to give you coming along soon. I really hope that you manage to resolve this very soon. Best of luck xx
AnonyMouse_8466 Posted November 8, 2009 Posted November 8, 2009 Nicky you are really going through the mill aren't you? It makes my blood boil that a professional can put the telephone down on a parent who is asking for help to get the support her child needs. As Upsy Daisy says you aren't being at all harsh - as a parent you would do anything to help your child, but you have to be realistic too. Try not to be too hard on yourself. I wondered if there is any support you can call on from your son's medical team, or whether a CAF has been drawn up or whether you are receiving support from the local disabled children's team (terrible title, I know). I'm desperately trying to think of ways to get some leverage to enable you to get the statementing process under way. No parent should have to fight for support in the way you are doing right now. I really hope you find a way through the maze soon. Take care Maz
AnonyMouse_4544 Posted November 8, 2009 Posted November 8, 2009 I'm afraid speaking from experience the only way is to fight and to pester and nag. A CAF and medical support help but won't automatically trigger a statement and without a statement you won't get a place in a maintained special school. Sorry but IPSEA are good and can offer support and advice
Guest Posted November 8, 2009 Posted November 8, 2009 If your doctor will refer to a paediatrician, and they will write a reprt then that will help.Ultimately you need an educational psychologist to write a report. I don't think your school can refuse to take him. Rather, it should be their appreciation of the possible difficulties that should motivate them to help you with the process. Good luck!
AnonyMouse_15046 Posted November 8, 2009 Posted November 8, 2009 Does anyone out there know if it would help for Nicky to pay for a private Educational Psychologist assessment?
AnonyMouse_468 Posted November 8, 2009 Posted November 8, 2009 With inclusion being so prominent, I really didn't think that a mainstream school can refuse to take a child with special needs. In my Nursery this term, I have several severe special needs, only one arrived already with a statement and therefore has one to one support, the rest we just have to cope with. The SEN budget covers some bits and pieces of support, and I get a continuous flow of outside agencies coming to observe and "give advice". At least three of the children would definitely benefit from special school provision, but we are told that it is the parent's right to send them to a mainstream school.
Guest Posted November 8, 2009 Posted November 8, 2009 I believe that if you pay for a private assessment you can eventually get the money back if the child ends up statemented. However, in some (most?) cases the child will still need to be assessed by the LA Ed Psyc before that can happen and in our LA they are trying to move away from a statement and introduce support before that stage as it is apparently cheaper. I'm not saying you wouldn't get a statement but it is worth remembering that you might not get anywhere any faster if you go privately and it could cost lots - it certainly did for me and I got "mates rates"!
AnonyMouse_73 Posted November 8, 2009 Posted November 8, 2009 So sorry to hear that you are having a rough time Nicky. I am sure you will have read up on this already but just in case you havent, SEN code of practice you need chapter 4. You really need to work very closely with the setting on this, and if you can, have you talked to their area SENCO. There needs to be a paper trail from the setting which includes observations, IEPS, statements from outside agencies and the better the quality of these the better his chances are. If this is all in place already then you need to nag and then nag some more. The settings area SENCO should be able to fight your corner for you, if they are unable to for whatever reason then go directly above them as the LA has responsibilities too. You may also find help via parent partnership, they can support an appeal process or put you in contact with the right person to do that. All LAs will have a procedure, probably a panel that makes the decision about whether or not a child should receive a statement. One thing I learned this year is that not all of the panels have an early years specialist on them and they make the decision based on the information they receive, they do not meet the child or the family. This is why the documents and involvement with outside agencies are so important, they form the basis on which the decision is usually made. If I read you correct, it is the local special school that wont take him without a statement, in which case this is quite usual. If you meant a mainstream school, then this wold be in breach of the DDA
AnonyMouse_4544 Posted November 8, 2009 Posted November 8, 2009 I don't think Nicky is saying her son is being refused a place in a maintained school but that her son needs a place in a special school and that isn't available at her local special school without a statement, and he won't qualify for free transport to the nearest school with a specialist unit either. In my experience getting a statement can be a long process and the louder a parent shouts and pesters the better. Some LAs will accept an independent EP report (expensive £300 -£400) but others will insist on the child also being assessed by their own EP service. Parents can apply for statements without support from a school and the LA must respond within 6 weeks.
Guest lou73 Posted November 8, 2009 Posted November 8, 2009 Hi I really sympathise with you my son has ADHD and Dyslexia.....I have been fighting since he was 5 to get a statement and he is now 8. I heard this week that my authority has just decided to do a statuatory assessment on him and will decide either to give him a statement of a statement in Lieu. In order to get a statement or even to get a child assesed you need to show 1 that all possible avenues have been explored! 2 that with help your child will make progress a 3 be the biggest pain in the rear end the authority has ever encountered....... I have battled for over three years and the fight is not over yet and my authority is one of the toughest but I WILL GET ONE!
Guest Posted November 8, 2009 Posted November 8, 2009 I think that you can apply/request a statement yourself and this often bears more weight. Ask to be referred to whichever service you can Child devlopment centre, hospital, speecha nd language and EP . Any setting worth its sort should get this rolling for you and fight the school. HOW DARE they refuse. they should have a Disability Equality Scheme in place. Not sure when your son's birthday falls, but can the setting he's in keep him for extra time. That's what I've just done for one child until her statment came through nd she went off to a special school. good luck.xxx
AnonyMouse_9650 Posted November 9, 2009 Posted November 9, 2009 Hi Nicky - I don't know if this is of any help but here goes I managed to get a child attending my pre-school statemented, however, this is not an easy process and you need to be prepared to be strong and fight all the way. I know it shouldn't be like this but unfortunately that is generally the way it is. Firstly you as a parent can request a statement and as kate says that carries weight but unless you have put all the background stuff in you may find yourself being backtracked to "fill in the details". You say you have a diagnosis so first things first You need to get a CAF raised by someone prepared to be the lead professional who will fight your cause with you When the CAF is raised you need to get all your medical reports in including paediatrics and they need to really paint the blackest of pictures (sorry to sound matter of fact but the worse things sound the better) You have got funding - is the LA 1:1 funding? If it is that's good and they usually have to do visit reports. As previous posts have said you then need to get your Ed Psych on board - his/her say so is generally what swings it but we managed to get a statement when our Ed Psych disagreed (medical evidence painted a lovely black picture) Really play on the needs element - but be careful you don't box yourself into a corner where if you get a statement you get a setting you really don't want. The process is fully documented in the code of practice - your first hurdle is the preliminary advise bit and again you need as bleak a picture painted as is necessary by medical support staff and your setting. Most LAs provide a booklet that has advise on writing this bit. If you get a statement process going check and re-check every word especially the key terms as the LAs sometimes try to welch on the deal at this point Be prepared for stacks of meetings In our case we recommended that the parents applied for the school place - you can always turn it down if things go your way or you get a deferral. Generally deferrals will only give you a year's grace. Think only of your child - ignore everyone else who tries to suggest (and they will) that other children are not as fortunate in that they don't have adults who care/can fighting their corner - you are fighting your corner for your child and much as you may sympathise with others thats as far as it goes. Parentlink are a good place to look for support Hope that is of some help
Guest Posted November 10, 2009 Posted November 10, 2009 (edited) When the CAF is raised you need to get all your medical reports in including paediatrics and they need to really paint the blackest of pictures (sorry to sound matter of fact but the worse things sound the better) The process is fully documented in the code of practice - your first hurdle is the preliminary advise bit and again you need as bleak a picture painted as is necessary by medical support staff and your setting. I don't really have any specific advise but I just want to agree whole-heartedly with this part! It's sometimes difficult not to 'talk up' what a child can do especially if they are your own child, but you really have to 'talk down' what they can do. If they need even the most minimal support for a task it needs to be mentioned. Also don't be too optimistic about future progress in your reports, paint the worse case scenario you can and hopefully they will have to do something. Finally I just wanted to offer my whole hearted support, it's a disgrace that it's so difficult to get a statement and I really hope you get a good outcome! Edited November 10, 2009 by Guest
Guest Posted November 14, 2009 Posted November 14, 2009 Evening all, Sorry in my tardiness in replying but all the family has been quite poorly. I can not thank you all enough for your amazing helpful replies. They have been incredibly helpful and I have put some of these things into process. Ironcially Ewan was supposed to be fitted for a reinforced buggy yesterday - so my husband and I took the day of work to take him to the fitting - excited in a way - he is such a heavy boy - only to be told at the hospital they didn't know anything about it and they are fitting him for a wheelchair. This morning we got a letter from the benefits people to say he isn't entitled to mobility allowance; so now I have a wheelchair coming that won't fit in the car!!! Have checked about the Ed Psych - unfortunatley she is on long term sick; so we could be waiting a while for some input. I have contacted Partners as parents and fought this week for the money from our borough be relaseased to the one in which his nursery is. Thank you so much again for your replies and your kind words - I think I have recieved more support and advice in your replies than in the three years since Ewan was born. I am going to re read them again and again and explore every avenue - and I will fight and I will win!!! Nicky
AnonyMouse_15046 Posted November 14, 2009 Posted November 14, 2009 Go Nicky! Keep fighting and everyone here will be there to back you up. Don't just take no for an answer about the mobility allowance. Unless you have a very good reason to agree with their decision, appeal and paint the worst picture of his needs, not the best. Ewan is lucky to have such a fantastic mum.
AnonyMouse_8466 Posted November 14, 2009 Posted November 14, 2009 Ewan is lucky to have such a fantastic mum. I agree! Don't take 'no' for an answer unless they can justify it - become as pushy as it takes to get what your little boy needs. Sadly the system isn't fair and it is sometimes only the parents who scream and shout loudest who get the right support for their child. Who is your local MP or councillor? Does they have a good track record of helping constituents get their voices heard? It is always worth considering writing to them for help when every door seems to have been closed in your face. Good luck - and remember we're right here behind you! Maz
Guest Posted November 15, 2009 Posted November 15, 2009 how about talking to your health visitor, maybe she could put you in touch with some people or give some suggestions?
Guest Posted November 15, 2009 Posted November 15, 2009 (edited) I agree the the comment about contacting your MP. I know of one specific incident where our MP managed where everyone else had failed - not to get a Statement but to get a child the services he required. Also, this week I HAVE SUCCEEDED IN GETTING A STATEMENT FOR A CHILD We pushed and pushed and heard this week he's got 25 hours for when he starts school in September and pro rata for the spring term with us - YAY!!!! NEVER GIVE UP!!!! Edited November 15, 2009 by Guest
AnonyMouse_4544 Posted November 15, 2009 Posted November 15, 2009 It must be a week for it... I heard we have obtained a statement for a child this week 100% support but it has been a long hard struggle all round. I'd say phone your LA and nag and phone every day until they know your name (and you know they are groaning on the other end of the phone because it's THAT woman again!) Parent Partnership & IPSEA can both offer advice and support. Usually you need reports from anyone involved in your child's care/life including you. You can apply yourself but basically it's down to providing evidence of need and evidence of what has already been tried and how effective it was. Good Luck
Guest Posted November 15, 2009 Posted November 15, 2009 Go Nicky!! Fight, fight, fight! From experience, you'll have to nag, whinge, complain and hound those who make the decisions on a daily basis The more you get your name known amongst the SEN team, CAMHS, Ed psycholgist etc the quicker things get done, and the louder you shout the quicker they seem to work! Please phone and appeal against the mobility decision. The Mum of a child I cared for did, and after 40 minutes of tearful explanations of what 24 hours in her life was like, they not only changed their decision but also helped her to obtain the medium level of Disability Living Allowance!!! The system is very difficult and only the very tenacious parents seem to get through it and get the right support for their child. I wish you every success. Nona
AnonyMouse_15046 Posted November 15, 2009 Posted November 15, 2009 It's just crossed my mind that some CABs are really good at helping people sort out claims for disability benefits. It's probably worth giving them a ring. It's a lot easier to get these benefits awarded if you understand the criteria. It helps you to word the answers the right way. That doesn't mean being dishonest, just one question answered slightly differently but still truthfully can make all the difference.
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