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? Aspergers, Richmond (N Yorks) help/support suggestions

12 replies

AGlassHalfEmptyNoLonger · 13/04/2012 21:08

First of all, can I say a big thank you to everyone on the board. I mostly lurk, but have found this board extremely useful over the past 4 years or so, and really appreciate all the help and support people post. Even if many of us look and don't comment, it really is truly appreciated :)

But I am now looking for local knowledge, if anyone can help me.

I am nearing the end (I hope) of getting a dx for my ds(10), but have now found out my cousins family is where I was about 4 years ago, just becoming aware that their ds is different and starting the process of getting help. I am providing all the support I can. My ds is dx'd dcd, and looking towards getting a dx of asd and possibly adhd, my cousin is looking at asd for her ds. A lot of the problems with my cousins ds are the same or similar as issues I have had with my ds, so I can help in that sense, but I have no idea of what the local services are like, or how things differ between our LA's as we are 200 miles apart. So does anyone have any knowledge of Darlington/Richmond (N Yorks), what their Parent Partnership is like, who is best to approach for referral, what the pathway for dx is, and any other support suggestions for people living in that area?

A meeting with the Senco has been arranged, and I am providing verbal support plus hopefully will be taking a couple of days off work at the end of the month to go up and give some support and advice whilst I am there (routine, timelines, etc, but need to see what is happening first), just after local knowledge and ideas really.

OP posts:
ouryve · 14/04/2012 21:11

Bumping this for you. I'm a few miles North in Co Durham, so things could be as different as they are for you, so can't really comment, but I know there are a few people who lurk on this board from N Yorks.

AGlassHalfEmptyNoLonger · 15/04/2012 00:56

Thanks :) Hoping someone has some ideas.

OP posts:
justaboutisnowakiwi · 15/04/2012 01:31

This reply has been deleted

Message withdrawn at poster's request.

andperseand · 15/04/2012 11:07

Have sent a pm!
Sometimes the fight can be won Wink (i have the scars) but services are patchy - excellent in some parts, non-existent in others.

discodad · 16/04/2012 10:55

Parent Partnership are well meaning, but do not see themselves as legal experts and take a softly softly approach with the LA (ineffective) and schools (effective sometimes). In common with most, they do not support at tribunal. They are probably useful to take to meetings, but not for much else. Will vary from person to person too.

Referral for DX is via GP to the nearest child development centre. The Primary Care Trust (North Yorkshire and Yorks PCT) that funds diagnosis have been historically poor wrt autism. They should by now (i.e. April) have put in place a diagnostic pathway for all of North Yorkshire from 0-19, but I know this is not the case in Harrogate District. As far as I know it is in place elsewhere. There has not been a referral service for children over 5 in Richmondshire for a number of years, so there may well be a waiting list. NICE guidance says first referral should be within 3 months of referral, but it does not stipulate maximum length of time to diagnosis. You may have to push and don't take no for an answer. Involve the MP if necessary.

North Yorkshire is a highly delegating local authority - that is it gives most of its SEN money directly to schools and retains very little centrally to fund statementing. They are in the bottom 8% of authorities that maintain statements as a percentage of the school population, and are looking to reduce this still further.To get one is nearly always a fight, but don't let that put you off, if that is what the child needs. Remember, a statement can be necessary even if a child is academically successful. You will probably have to be prepared to register appeal/go to tribunal to achieve decent provision, in my experience.

The academic results for children with autism at KS2 are some of the worst in the country. They are somewhat better at KS4, but still variable.

They have recently invested in Enhanced Mainstream Schools (EMS) - 5 primary schools for Communication and Interaction (inc autism) and 5 secondary schools for high functioning autism. The Council's view is that pretty much all children should be in their mainstream, local school. Getting into an EMS may well be a fight too - only for "a very small number of children" according to the Council. EMS provision, though, is essentially mainstream provision with a bit of pull out specialist teaching. It is not like an autism base. The staff in EMS provide outreach to 70-80 other schools at the same time, so may well not be on site that much. It is probably an appropriate type provision for children with mild/ moderate needs, but not for those with mod/severe needs, which is how North Yorkshire present it. A child needs a diagnosis and a statement to attend an EMS, despite the Council insisting that they look at a child's needs, and a diagnosis is not necessary.

There is an outreach service provided by the EMS staff for children without diagnosis in mainstream schools, and for children with a diagnosis there is the ASCOSS outreach service. I don't think there is any difference between the two in practice. It's another layer of provision available to prevent/delay children getting regular, specialist help / statement of SEN.

There is no specialist autism provision in North Yorks provided by the Council. The nearest indie will be Breckenbrough school for HFA in Thirsk.

My understanding of CAMHS service is that they only see children with autism in a crisis. If you feel it is getting that way then you will have to insist either directly or via GP.

Support groups - nothing terribly close I'm afraid:

Craven Support www.cravensupport.org.uk/
Harrogate NAS harrogate-autism.org.uk/
NYPACT www.nypact.co.uk/
Ryedale Special Families www.ryedalespecialfamilies.org.uk/index.htm
Whitby WHISH www.adhd-yorkshire.com/Support-Benefits.htm#Whitby%20Hidden%20Impairments%20Self%20Help%20Group

North Yorks are about to consult on a new autism strategy, which may well change things. For the better or worse, I'm not sure.

My experience of North Yorks SEN officers and ASCOSS team has been a negative one. Any dealings you have with them need to be noted/ minuted - keep a diary/evidence file, contact IPSEA for advice, read the Code of Practice know your rights etc. Other people I know have had better experiences. It is possible to achieve good i.e. appropriate provision in North Yorkshire, but it probably won't fall in your lap.

andperseand · 16/04/2012 11:14

You have saved me writing a long post! Although in the end (after a very long time) our outcome was more positive regarding school, we had to go out of area for diagnosis. PP was good.
Outside of school ongoing support that would work for our family virtually non-existent in our part of the county.
Just to add Breckenbrough is non-maintained not independent so places are funded by relevant LA through a statement.
And two more support groups
Fun With Autism www.funwithautism.co.uk
Ripon Acorns www.ripon-acorns.co.uk

Dontlikepink · 16/04/2012 12:38

Just want to say many thanks for the wealth of information provided by the posters above.

Could you possibly comment on the services in Skipton area?
Do you know what the "standard" package for an ASD related statement in mainstream school is in N York?s? Do they fund 1:1 LSA, Occupational Therapy and Speech Therapy in mainstream school setting (if this is what is recommended from statutory assessment)?

How do I find out where those secondary EMS are?

AgnesDiPesto · 16/04/2012 22:22

here scroll to the bottom

AgnesDiPesto · 16/04/2012 22:30

Skipton might come under different PCT e.g. Airedale Hospital. Try AWARE and Craven Support

LittleDragon · 18/04/2012 22:43

I'm aglasshalfemptynolonger's cousin. I have just had dx of asperger's for myself and while at my appointment I mentioned about how my ds seemed to be following in my footsteps and was advised to see about a referral for him. The senco has said she can't refer for asperger's and it has to be GP, and we have appointment booked with GP tomorrow. Senco is referring re DCD.

AGlassHalfEmptyNoLonger · 18/04/2012 23:18

Thank you for all the messages on and off thread. They are really helpful and made myself and my cousin aware of the fight she will probably have :( But having come through so far with my ds, I have some knowledge for my cousin, just wish I didnt need it.

OP posts:
LittleDragon · 21/04/2012 00:06

Just a quick update.

GP has referred DS to CDC for assessment with no problems. We are also going to get in contact with Fun with Autism.

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