Suze Report post Posted February 9, 2006 ..................phoned the development clinic at my local hospital today(.After 2 OT groups and a handwriting course the OT signed him off 2 yrs ago).Someone I spoke to yesterday mentioned the OT therapists ran a social skills course(which my son definitely needs).So I phoned his therapist up today.When I mentioned my son was dx ASD she was incredibly apologetic and told me they were no longer funded to provide OT for autistic children. .........................she agreed it was wrong but a lack of funding had left them unable to offer a service.Even though my son was on the 8% for the battery test his dyspraxia is treated as a co-morbid the ASD being the primary DX. She was very apologetic as she said she has no control over the purse strings.Very sad . Quote Share this post Link to post Share on other sites
smiley Report post Posted February 9, 2006 Ah.....that would explain why we're been waiting 18 months for an appointment..... Quote Share this post Link to post Share on other sites
Flora Report post Posted February 9, 2006 Suze, it's so wrong isn't it? It's the same old thing, depends where you live. When my son was first dx, he had loads of input from SALT; they ran courses for social skills and went in to the school to work with him etc, but OT was a definite no no. Then when we moved to a new area it's the total opposite, we get nothing at all from SALT but my son attends regular sessions with OT who work with the autism outreach service to help him with various problems. None of it makes sense. You can learn the system in a particular regional area; but it doesn't apply in every region, or, they change their policy and provision when your back is turned. It's as if they are making it up as they go along; which I think we all know is the case. <'> Lauren Quote Share this post Link to post Share on other sites
call me jaded Report post Posted February 9, 2006 (edited) They were talking the other week about whether people who smoke and drink should have equal access to the NHS. I don't think the general public is aware that access is limited if you're disabled. I think we all need to be writing to our MPs about this. Edited February 9, 2006 by call me jaded Quote Share this post Link to post Share on other sites
annie Report post Posted February 9, 2006 When Alex's statement was drawn up 2 years ago. It said that he was to be referred to SALT and OT. He finally got referred in September last year and we received the forms just before Christmas. I know I should have sent them back, but I didn't bother . I didn't see the point. My son is 16 now they probably wouldn't have bothered seeing him for ages, if ever. Quote Share this post Link to post Share on other sites
BusyLizzie100 Report post Posted February 9, 2006 Suze, that's awful. My younger son also has had OT, including sensory integration therapy, and it makes such a difference. His therapist has just left because she has a young family of her own and the NHS refuses to be flexible over school holiday work - so we've lost her, and all her special expertise with sensory integration. It's not right, is it. Surely, your child has a need for OT because of his dyspraxia; does it matter what other diagnoses apply to him? It's such a shoddy excuse! So where will he get therapy for his dyspraxic 'element'? If OT won't take responsibility, then someone has to. Why are these people washing their hands of our children? Lizzie Quote Share this post Link to post Share on other sites
jen Report post Posted February 9, 2006 I would write to the commissioner for your local Primary Care Trust trust and also send a letter the manager of the OT's where your son has been treated. State your child has ASD and has been refused OT because of his diagnosis. Ask him/her what they are doing to address this problem in the OT service. Also send a copy to your local MP. This is what we have done. Jen Quote Share this post Link to post Share on other sites
rainbow queen Report post Posted February 9, 2006 hi suze i told you last time i spoke to you about what the ot said to me about my son,she said they couldnt offer help as he may come under the autistic spectrum and they dont deal with it,i also mentioned about if he was dyxpraxi what then? im still waiting to see her report of my son which i keep asking for cause i also want to follow this up as to what help he should have and who should provide it. p.s see you at the next meeting,i put my name down for the bowling too Quote Share this post Link to post Share on other sites
lisa Report post Posted February 9, 2006 Call me cynical but in our area I'm sure that the OT's downplay a child's difficulties so they don't deem it necessary for them to have a course of therapy. The service everyone seems to get is an initial assessment, perhaps setting up a few strategies for the school and then signing the child off of OT!! I go along to our SEN parents group at school and don't know anyone who gets OT. In fact a friends child is partially paralysed down one side but still isn't considered "severe enough" to receive therapy. The only reason my daughter even got to see OT was because we'd had a private assessment done which said she needed a course of therapy and the LEA wanted to disprove it!! Lisa Quote Share this post Link to post Share on other sites
smallworld Report post Posted February 10, 2006 (edited) So it's not just us then ! Our paed couldn't see a need for an OT referral for our ASD son ( OT didn't even attend the 4 week assessment for dx even though there was a slot for them ) School are desperate for help with his fine motor skills and overall clumsiness, we have now self-referred along with the school nurse, of course we are now waiting to hear from them............ It's been recorded in the last two annual reviews that my son needs this, but I can't see it happening any time soon I know that one paed OT has just left, so if I ring I'll get the usual 'there's no-one in post at the moment' or 'we're currently under-staffed' More grrrrr ! Our LEA has this super-duper 'inclusion policy' how can it work when children in special schools get access to services those in mainstream are deprived of ? !! wac Edited February 10, 2006 by waccoe Quote Share this post Link to post Share on other sites
Suze Report post Posted February 10, 2006 ........Rainbow queen..........luckily my ds had his assessment 2yrs ago.So he has had 2 courses of OT.Since then due to the higher incidences of ASD they can longer fund for ASD because there are simply too many(the OT told me this ).The OT yesterday told me to write and complain she was in total agreement that this isn,t right.I,m lucky in that my son has had some input.But I really feel for those like your son who it seems have had the plug pulled on them ................marie see you at the next meeting.........can,t wait to de-stress .........and bowling too.........we must be mad .........well it helps Suzex. Quote Share this post Link to post Share on other sites
Tez Report post Posted February 10, 2006 Our OT service only offer an assessment service, due to restrictions on staff and huge demand, they are unable to offer ongoing therapy. A had to wait 18 months for his assessment and he only got it then because the LEA requested they brought it forward as part of the statutory assessment. It didn't tell me anything I didn't know, but it was useful because I now have a report that confirms my opinions and can be used to back DLA applications etc. However, the report clearly indicated a need for ongoing therapy in addition to any guidance they were able to give me. Quote Share this post Link to post Share on other sites
darky Report post Posted February 10, 2006 it does make me cross. my sons battery composite was just 1% and he cant access the help either, not to mention his perception skills at 6% which indicates significant motor intergration difficulties. the o/t's and physio's arround here only work part time and they mainly do assessing not treating. my daughter is on a waiting list at the mo for sensory intergration therapy and we have been told it will be many months before she can access this. there is a desperate shortage of specialists in asd's. salt's, physio's, o.t's, a lack of places our kids can go which can cater for them specialist schools closing etc etc. its diabolical and about time someone did something!! Quote Share this post Link to post Share on other sites
lil_me Report post Posted February 10, 2006 We have had the same response in my area, no OT support for my son, but I am told if I lived 10 miles away in Sunderland's area they get all kinds of OT support for children on the spectrum. Quote Share this post Link to post Share on other sites
Malika Report post Posted February 10, 2006 Hi Suze and all <'> This thread is of great interest and concern to me as H has been assest in August and refuse any kind of proper OT session because of lack of funding , now I have been trying to get a proper assessment which I could use as a prove of him having sensory motor integretion disfunction but they keep saying that they have not observed it and refuse to do any further assessment, I wanted them to observe him in PE or outside the way he cannot go down stairs without holding to something and his fear to go on swing or to climb or him falling on the ground when he is trying to run fast, as well as lookiing into his difficuties in wearing certain material and me having to cut all labels , the only thing I have been told is that they will ask the SENCO at school who spend only 1 hour with him a week and does not do physical exercises except for some hand manipulation every 2 weeks . I think they are reluctant to recognised that H has sensory motor integretion pbs because then they may have to provide some more support for him they just keep saying that it is because of his "autism". Another matter is that H has flat feet but one of the GP says well I had flat feet all my life it does not bother me. I don't know what is going on but I have notice that in most matter respective to ASD related difficulties professional now seems to have adopted the attitude "there is nothing much we can do" while in another hand specialist keep saying that the right intervention is the key to a better future. It is frightening to think that our children now are being abandon by the system because they are too many and therefore there is not enough money to take care of them . But yet again this seems to depend of the area we live in and there are huge discrepancy between all the area respective to the services offered to ASD children. None of the raccomendation put forward by the Government seems to make any differences as they did not attach any money with it. Where I live there is one year waiting list H has been assest after 6 month because it was August andmany people canceled their appointment. The fact is that I keep wondering what we could do as parent to make an improvement most of us are struggling in our little corner and unable to have an impact on how the provisions are set up. May be we should do a general petition to request funding and not only guide line but new obligation for the assesment care and provision given to our children. Take care Suze hope you'll get some more help. <'> Malika. Quote Share this post Link to post Share on other sites
jb1964 Report post Posted February 10, 2006 (edited) They were talking the other week about whether people who smoke and drink should have equal access to the NHS. I don't think the general public is aware that access is limited if you're disabled. I think we all need to be writing to our MPs about this. I agree 100% with this. Until my daughter was recently diagnosed (AS) I was totally unaware that there is no support within the NHS for such families and gobsmacked that you just have to get on with it. I just cannot imagine how families with several children with similar disorders cope especially when they have to conform to a life/including an education system that has no provision or understanding. Edited February 10, 2006 by jb1964 Quote Share this post Link to post Share on other sites
smiley Report post Posted February 10, 2006 And ironically - yesterday i said we've been waiting 18 months for this appointment..... Got the letter today - we have initail assesment in March.. Have everything crossed that they do, and continue to help.. .. as i think the majority of M's difficulties at school are related to sensory problems... Quote Share this post Link to post Share on other sites
jen Report post Posted February 10, 2006 We live in a large city covered by 3 Primary Care Trusts. In the one trust they commision some private paediatic OT assessements and several courses of therapy through a private OT payed for by the NHS. This is for children with sensory intergrations dysfunction. This has only happened by parents writing to the commisioner at the PCT. Once you have got diagnosis off the OT ensure this is put on your childs statement with how it affects your child. Because this can bring a lot of money to your childs statement. So please start writing your letters. Jen Quote Share this post Link to post Share on other sites
