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Now we have a diagnosis (asd-Aspergers) what help are we entitled to??

(16 Posts)
Willmouse Sun 07-Oct-12 10:32:42

I went on a skill share autism awareness day yesterday which was great and I have learnt a lot.

I am aware I can claim for DLA and have seen the Celebra site which I intend to use. It is going to be 3 weeks until we get a full copy of their report so I don't know whether to wait until then.

Are we entitled to more child tax credits and is it means tested. Do I need DLA first to qualify for anything?

At the moment I am working as a childminder to make ends meet but to be honest DS hates it sad . I am also looking down the barrel at my DS2 (aged 6) having autism too (just waiting for appointment with community paediatrician) and, I think, a leaning difficulty too. Throw a 3 yr old into the mix and it just about tips me over the edge sad

I am just contacting local support groups and looking into getting as much help as i can as I feel I need anything I can get at the moment.

bochead Sun 07-Oct-12 11:44:35

How old is your child?

myBOYSareBONKERS Sun 07-Oct-12 12:37:48

My son was diagnosed ASD 3 weeks ago . . . . . . and we were told in the same appointment that as there is nothing they (CAMHS) can do for us, our case with them is "closed" - GOODBYE!!

I have contacted local self help groups. There are a few on facebook too. What area are you in?

I have filled in my DLA and sent it off - not sure how hopeful I am though as I have heard it is really hard to get an award.

I live in Northampton and they have a SNIX database that I have joined which sends out a newsletter with groups and residential days for them to go on.

Willmouse Sun 07-Oct-12 13:14:58

My son is 9.

We are from Staffordshire. He has been 'formally' diagnosed by Midland Psychology and we have been told that they will put us on a course, there is a social skills group he can go to and we can dip in and out of services they offer.

Myboysarebonkers- we went to CAHMS and were told by them there was nothing they could do for him. But, at that time were on the way to getting a diagnosis so as upsetting as it was, it wasn't the end of the line for him.

There is an enhanced amount of child tax credit dependent on the DLA award..so yes they have to be awarded DLA to qualify, but then get on to HMRCsmile

If you don't work, or earn less than £98 a week (I think..the amount may have changed since I looked!) you can claim carer's allowance if your child has DLA at middle or higher rate..nothing for lower rate. It's £58 a week so not exactly a massive sum!

In theory your child might be entitled to direct payments to give you/them respite, help with care etc , however it's usually a fight to just get an assessment (social workers disabled children teams) and children with ASD are never priority, unless they have extremely high needs (ie very low functioning) We get a massive 3 hours a week for my son (ASD moderate LDS) but took quite a lot of persistance to get there! We use it for special needs holiday clubs etc and a carer once a fortnight. Worth checking out!

Other than that I'd check the local support groups. You'd think that after the stress and hassle it takes to get to the point of diagnosis there would be sort of aftercare, but sadly it isn't often the casesad

bochead Sun 07-Oct-12 13:44:08

Cahms may not be able to help further but they should have the decency to have signposted you to those that can.

Contact your local branch of the National Autistic society & ask for a place on your local EarlyBird Plus course. A member of your child's school staff should also attend this to get the full benefit.

A quick phone call to the NAS should tell you what local services are availbale.

Some councils offer appropriate leisure activities such as afterschool childcare, playschemes and riding for the disabled or swimming lessions - call em and ask! They may also offer activities and support groups for carers and siblings.

Then apply for a statement, sharpish (for gawd's sake don't be fobbed off by school staff at this stage - secondary is looming and your child can get it for social as well as academic support). Do this yourself as you have rights of appeal the school doesn't. It also triggers the Ed Pysch visit to happen in a timely manner.

Next step is an EP & OT visit to school in order to help identify any additional educational needs and any sensory/motor issues that are a current impediment to learning. imho SALTS seem to be best placed to help on the social side, so don't be scared to ask for a SALT assessment/input too.

Even if you are not awarded a statement - the application process puts your child on the radar of the LA & therefore ensures the school are kept on their toes wink.

Don't delay a statement application as the gov currently in the process of changing various SEN laws and the last thing you want is for your child's need to be forgotten about in the handover to the new rules - esp as they will hit the implementation period at the same time as your child commences secondary - traditionally a really tough transition for Aspies. Get your kid into the "system" and on the relevant profs radars now to avoid problems in the future. Those kids who aren't picked up by the early years services often get forgotten about as it is.

Extra tax credits are means tested and are dependant on a DLA award.

Willmouse Sun 07-Oct-12 14:11:40

Bochead- I have been told by school that he is not bad enough for a statement because academically speaking he is achieving (with the exception of maths which for some reason he just cannot do). Is this not the case?

colditz Sun 07-Oct-12 14:13:20

You need dla to qualify for anything financial, but be aware that you now qualify for help from mencap

AttilaTheMeerkat Sun 07-Oct-12 16:00:30

Hi willmouse,

re your comment:-

"I have been told by school that he is not bad enough for a statement because academically speaking he is achieving (with the exception of maths which for some reason he just cannot do). Is this not the case?"

No. Statements are also for social/communication needs as well. Many children on the ASD spectrum find secondary school particularly hard to cope with if their needs are not met (all the children on the ASD spectrum that I know off all have statements).

If I had £1 for everytime I had read similar on here I would be a wealthy woman by now. It is lies designed to put people off from applying, people whose very children do need statements urgently!.

You are truly your child's best - and only - advocate.

bochead Sun 07-Oct-12 16:30:45

I was also told by school DS didn't need a statement several times - wish I had a quid for every other Mum that has been told that too lol! I'd be well rich.

He now has 22 + 5 ASD trained 1:1, an alphasmart, a sensory diet, weekly SALT, 2 x termly OT input, & lots of small pieces of equipment that make all the difference in the world, such as a sloping writing board, ear defenders, balance cushion etc. Not much support was needed there then was there lol?

Schools are trained to trot out the same ol standard lines to parents re statements. It's how LA's keep their budgets in check and nought to do with child welfare.

Ignore school fob off and apply for statement, you don't need their permission & actually it isn't until his educational needs have been formally assessed (& with and AS diagnosis I'd ask for SALT + OP input) by the relevant professionals that anyone will have a clue as to whether or not he needs a statement. The IPSEA website has model letters for you to use. I'd make my statement application a far higher priority than DLA tbh.

Secondary for a child on the ASD spectrum minus a statement, & a primary that thinks everything is "fine" equals a level of vulnerability that's dangerous.

Willmouse Sun 07-Oct-12 17:19:00

I will look into getting a statement then. He doesn't have SALT or OT at the moment. Autism outreach haven't even been in yet.

School should have the right piece of paper by next week though to get autism outreach in.

There is a meeting of the National Autistic Society local group on Wednesday so I will make sure I go. I feel clueless.

bochead Sun 07-Oct-12 18:29:39

Services such as OT, SALt & Autism outreach are inaccessible to children without statements in my neck of the woods. It was the discovery that we could only access specialist help this way that led me to apply for a statement as I was blummin desperate for help at the time.

Once kids get to school age it's sink or swim if their issues haven't been picked up in the early years. My son sank in KS1, and I bitterly regret not requesting a statement sooner (thanks Mumsnet!).

AttilaTheMeerkat Sun 07-Oct-12 19:04:17

A friend of mine was told the same lies re "child does not need a statement" by junior school. He is now at secondary - and has a statement also because he needed more support and was failing without it.

My friend is full of regret and not just anger towards the school that she listened to them.

Willmouse - do use the IPSEA letter on their website which is www.ipsea.org.uk. Apply for it asap, this week if you can manage it. AO to my mind can promise much but actually have no real clout or influence within school.

Willmouse Sun 07-Oct-12 19:22:41

I will email the SENCO at school tomorrow saying I want him to have a statement. If she doesn't co-operate I will apply for one myself. I have looked at that site and may be back here for more help!!

SENCO is also one of his class teachers so you'd think she would cooperate.

beautifulgirls Sun 07-Oct-12 19:33:49

You are better to apply yourself than let the school do it. The school will just drag their heels and not necessarily put all the info in. If you do it you know it is done. The school will be asked for their views during the process anyway. Better to put it together yourself and just let them know that is what you are doing.

Willmouse Sun 07-Oct-12 19:35:53

Beautifulgirls, thanks for the tip. Will let school know out of courtesy and get on with it.

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