unable to access ot at all

[alladither]

My ds (5) has been under observation by paed for at least two years now and it's getting ridiculous. In our opinion he has asd, dcd and hyper mobility. We are awaiting a panel meeting for diagnosis of asd and have a diagnosis of hyper mobility with motor coordination difficulties.

Our paed has tried to refer our ds to ot several times now and just gets the reply that they do not see children with difficulties like my ds'.

I have goggled for my pct and found freedom of information requests advising that there is no ot for children with dyspraxia in this area. My paed did advise that we could move to gain access to ot but may lose out on other services.

I feel like if ot don't assess then we are unable to obtain a full diagnosis for our son and they can deny treatment / therapies.

School have been fantastic so far (year r only so far) and are in the process of applying for sa. Have arranged a team about the family meeting for september. Really don't want to move.

Is there any way to force our pct into providing ot for my ds? Is there a way to access via the school?

This makes me so , when groups of children are discriminated against because of their disability. Have you seen this article www.thisishampshire.net/news/10463660.Dad_s_anger_as_autistic_son_is_denied_therapy_at_Basingstoke_hospital/

Are you able to instruct an independent OT to carry out an assessment? Their report could then be used to get your ds' needs specified and quantified in an SEN statement. The LA would then be responsible for ensuring OT support is provided.

Just a thought, my dd was diagnosed recently by a physiotherapist with hyper mobility. Perhaps this is a route you could look at?

Can your paed refer you to an OT in another area that DOES deal with the relevant issues? We had a similar issue in that there was no OT in our area that dealt with sensory issues so we found one in another area and ask our paed to refer us. She has said she will need to take it to the PCT panel for approval but didn't seem to think they would refuse it. The downside is that it will take a while but paying to go private may be an option you want to consider?

What a load if sh!t this country is sometimes. Good advise above! The them you want to be referred out if county. If not go private for a ot dx. When they then say they will not I knowledge private dx, tell them to get a ot to counteract your dx. Also find out who is charge of ot ( as in the head boss of your county ) and write a formal complaint. Say they are contravening his human rights and dsycriminating against his disability. No idea if that would work but if you shake a bees nest, there is also fall out to follow

Thank you for replies. We did try accessing sheffield childrens hospital privately ages ago and they were lovely to chat to on the phone but could not take us on as we lived too far away apparently.

Think we may have to go the private route for assessment just not sure where to start. Anyone recommend a private ot in east Yorkshire at all? Need to be good with statement process and handling lea.

Just read the article link thank you summerhasloaded. Going to nag dh to death now as he is legally trained. Only problem is that he is a bit of an ostrich when it comes to ds and doesn't want to believe that he has any issues.

Your paed can refer to another area who do have an OT who deals with difficulties like your ds's.

You can ask for an out of area referral and OTs can be very helpful at assessing needs.

The only thing I would say is that many of them don't understand Hypermobility Syndrome at all and actually, the practical advice given by OTs, is usually little more than common sense - regular breaks, snacks, drinks, quiet place, pen grips etc etc

I have spent a lot of money ensuring DS's needs are met on his statement and that he has appropriate support. I think OT help has been useful in confirming those needs but pretty useless in meeting them in a practical way. And we have been to Gt Ormond st too.

At the end of the day, what works for a child in a classroom setting is very much dependent on the child and their awareness of being different and the capacity of the person supporting them to pre-empt difficulties and adjust provision.

I have found NHS OT's tend to play down difficulties as they do not want to take on the extra work load.

I found an indi OT assessment far more in depth and helpful at identifying difficulties. However the programmes etc recommended by indi OT had to be implemented by a NHS OT, who declined the referral as they are 'understaffed' and 'only dealing with the most severe cases'. So back to square one.

I could have asked for a referral out of area (which would have been back to the first NHS OT who played down difficulties) so didn't bother.

What services do you recommend spending on? At the moment we feel stuck everyone keeps saying there are a lot of barriers for him to overcome with out actually telling us how to help him overcome them.

School have been good and arranged a lot of things for us such as specialist seating and a ta for a while. They also have been the driving force behind applying for sa. Just hope we can get everything we need but I really feel unsure what that is.

Just need a guide book to get me through everything.

If you are applying for SA, it might be worth getting an indi OT assessment at some point, to provide evidence of need. If a need has been identified the statement should include this.

Fab will try and get one done asap. Just need to find someone.

I had an independent assessment done as the NHS OT refused to see him - his needs were immense. LA refused to accept it so got their own report which inidicated that his needs were immense! LA still dragged me to tribunal over the OT though.. they tried to put it all in part 5/6. they pressured me to decide to go with my own report and I refused and said I wanted parts of both in the statement. the NHS OT was then not called by the LA as she was on our side not theirs and they couldn't risk calling her. The LA conceded all the OT on the morning of the tribunal - we have a very very good OT package now - hes in an independent asd school with OT on site which helps :-) was a battle but was worth it. the NHS have now made it clear that they will not offer any OT re sensory processing etc

We have found barnados ot service to be great. Sensory trained etc. They are near Beverley if that helps. The initial assessment is around £600 but is definately worth it.
It is possible to get their recommendations written into a statement as I know of three that have managed it without much hassle!
It is possible to get an OT referral in East Riding but be prepared to fight their policy of children that use a wheelchair only and no ASD. The NHS OT we see is fab with us and has helped with regards to hypermobility and dyspraxia ( she chose to ignore the ASD)

Thank you for your replies. Wanderingwind your fantastic. We are based in Beverley area so even better. Thank you. Could you forward me their contact details at all?

You need to contact the Barnardos DSI service at Holme on the Wolds. Sorry I don't have the number on me as away at the moment. If I remember correctly its also on the FISH website. If you're not already registered with Look Ahead you can also do that on the website, they are great at sign posting.
If they can't offer what you need there is also Therapy in Praxis which is towards York but I here is more expensive.
During tthe statement process keep talking to the LA as most people I know have found them reasonable but they won't hand anything out without you making a clear case as to why and the benefit to your child and you will need professionals to back you up! It's great if your school is on side.
Good luck

Thank you so much wanderingwind. Think we will definitely be contacting them asap. Have found their details.

I am already registered with lookahead but hadn't thought of asking them.