Will this be enough evidence? - DLA

[AutumnLea]

This is going to be so long and I can’t make it short, sorry.

In July last year I sought a referral to paediatrician for DS(2) for an ASD assessment. Symptoms extensive but for example, sleep problems, eating and drinking problems, milestone regression, no speech, no understanding etc. Also self referred to SALT at the same time.

September 2023: Paediatrician sent letter saying sounds like autism, needs assessment but they don’t refer for that anymore. GP said they don’t either and contact HV. Unable to contact HV so wrote to ICB to ask how to get this referral.

December 2023: first Salt appointment, she can’t refer either because he isn’t on the pathway but emails HV to ask if they can contact me. Also says she suspects GDD.

January: regional complaints team respond saying they need another month for a clinical review. HV calls and books appt for February. Second SALT appointment after which they give me things to work on at home and a ‘returners’ form to come back once we have done it. Sends report stating speech delay, understanding delay, possible autism and states referral closed while we work on things at home.

February: regional complaints team respond saying they need another month for a contractual review. HV cancels appointment due to migraine.

So, seven months down the line we still don’t have the referral.

I had already sent for a DLA form in January so we are now at the end of the 6 week window and this is all I have:
-Initial GP referral to paediatrician
-Paediatrician response
-Report from SALT

Nobody has filled in the section on the form for someone who has seen the child, SALT said to ask the HV but I have no idea now when or if she is even coming.

I’m so tired from all this I can’t even see anything clearly anymore, is there anything I’m missing?

I can provide extensive notes of my own but that’s not evidence really. I have to send it now because in November I will be expected to return to work and there’s absolutely no way any childcare setting will take him (quite violent, can’t communicate, can’t eat or drink normally, freaks out if other children are around) so I need to be established as his carer for UC purposes, which means middle rate DLA.

I’ve got no option but to send it as is, but will it be enough? If it fails we will have to live on sanctioned money and it will really, really put us in a bad position.

Ultimately what we need is an EHCP but without evidence they are just going to turn around and say no. What I could do is try and convince a preschool to take him on a very limited timetable or something, but anyway I’m going off point.

If anybody actually gets to the end of this, thank you, and what do you think? I am just beyond stressed at this point and have nobody to ask

It is impossible for anyone to say if it will be enough or not. Apply anyway. Completing the someone who knows the child section isn’t essential. If you are refused request a mandatory reconsideration.

Have you asked around locally and googled to find the referral process for your ICB?

Alongside DLA you should request an EHCNA. On their website, IPSEA has a model letter you can use.

Thanks so much @SearchingForSolitude I will do this letter next.

Re: the referral process, it's quite clear in their guidance that any hcp involved with the child's care can make the referral ie. GP, paediatrician, Speech and language or HV.

The problem is that everyone is simply saying only the HV can do it, which is just not true and I hope to have it resolved once their contractual review is complete.

The paediatricians office said they stopped doing them in 2021, the GP also said they no longer do them.

SALT did say she could have done it but didn't think it would be accepted without him being on the pathway. The health visitor has also said that she won't be doing it either but will refer it on to some kind of nurse and they will make the actual referral.

It looks to me like they must have so many referrals going through that they've all simply decided not to do it anymore. I knew this would be difficult but it's a complete nightmare tbh.

While waiting for the ICB review, if the referral process allows any HCP involved to refer then push the GP or SALT to and complain directly to the surgery/department if they refuse saying they can’t.

Just to give some reassurance I did not have a HCP write in the form. Sent off form with barely any evidence. It was a 4 1/2 month wait during that period I gathered reports, and letters. My LO is 2 when approved for MRC. just send off the form and you can send evidence while you’re waiting for the outcome. I missed the 6 week window and regret it as they could have backpaid from date called up to request form. DLA is not based on diagnosis, it is based on your child’s needs so if your child needs more care/adjustments then their peers you need to apply. I also did a parent request for an ECHP which is currently in the process, I doubted LO would be approved because of age but the evidence I collated they could not deny. Photocopy everything, have email trail INCASE you can refer back and for evidence. Also my LO has been attending nursery since 14 months, you do not need to have a reduced timetable. The nursery should be making adjustments to suit your LO with a support plan. All the best.

Thank you @zoeybrooks45 that is good to know. With a bit of luck I should be able to send more evidence later on.

So I’ve got through child Dla posted form on the 18th they didn’t receive until the 28/3 has been appointed but told could be waiting up till the 15/8 such a long time I am shocked how long this takes to process.

There's a DLA wait time thread here @Momstheword123

www.mumsnet.com/talk/special_needs/5059408-dla-wait-time-thread-40