DLA WAIT TIME THREAD 39

[Emmajm85]

DLA Wait Time Chat

Off course you have the fight. No matter how exhausted we are we somehow carry on and fight for what our children deserve. Use the gap from now til you get letter to recharge then go kick some ass 💪

non dla related , I hope you guys don’t mind me asking…
if I remove please let me know.
Have you any of you guys had any experience getting mobility pushchairs or nappies for older children?

I have a 4 year old autistic little boy. He’s has no sense of the danger and unfortunately is getting way to big for me to carry.
Alongside that his nappies are becoming no longer available

@SAM2409 my boy is 8 and has autism and sever intellectual disability. He is still in pull ups and I get these from the nhs. You would need to speak with Peads then go from there. I get a 3 month supply. He’s just gone in to 8-15 years pull ups! Hope this helps x

Thank you!! I thought that was the case, I went to my place and they were no help at all🙃

Have you applied for the Family Fund grants? Maybe they can help with the chair? I contacted my council’s social services last year for support (not money) and they did signpost to some charities. They also had a grant to help with things like appliances etc. Maybe it’s worth looking into that, website probably has information? Good luck 🤞🏼

Hoping for lots of awards this weekend x

@ToughMum my son hot LRM aged 5 and I never even knew about SMI… we have just done CoC aged 12. You don’t have to do it straight away if you are worn out but if you are sure that’s what he needs… go ahead 😘

As the name suggests I am made of strong stuff for my son and over the last 18 months have got him a lot of things including DLA BB and a decent EHCP as well as a PA. Is the next step to ask for MR or will they look again? His consultant rung me yesterday and said would provide a letter showing he needs adult with him all time and no safety awareness. But is this enough to change their decision?

Do they send award text over the weekend d too ?

@Chickapea77 yes there is a flowchart they follow. All on Google. The cerebra guide is good too. Giving detailed examples is key. I even got the brain injury and school to write me a support letter. But don't think that's enough for SMI rules.

Think they do. DM's are working over the weekend just phone lines are closed

I only know because of this chat, after so many years struggling and hardly going anywhere with him, I only put in the CoC because his new teacher said he should have it as they are trying to take him out into the community and the blue badge would be essential to keep him safe.
You are a great mum and I am sure that you will give it all you’ve got.

I’ve looked into family fund but I thought they only helped with stuff as listed on their website , trikes, toys, clothing etc.

I am sure I have seen them helping with other stuff, maybe I am wrong. Only applied twice, once for an iPad and other for a break.
There was another one… Care Collective or something like that.
I never used a pushchair but I remember going to see Panto with another mum that did and my son completely melted down half way so she had to let me use her chair to get him out of the the theatre 😩
Life saver, we should have had one…

Are you in England?

We have the same scan date, fingers crossed we hear something super soon!!!

@SAM2409 I had to contact occupational therapy regarding push chairs

Feel like this will be the longest weekend of my life!! Especially as ours is due anyday.
I'm gonna call Monday, be 15 weeks 😬😬

I got my daughters wheelchair from the hospital she is the same no sense of danger when she’s to big for it they’ll lend her a different on xx

Ooooo I didn’t know they worked over weekends aswell that’s given me some hope x

I agree, get any paper work you have now too, and get the smi chart, and try and see if you can highlight the evidence each step with evidence then when you get your letter, do the MR with each point this time, you can do this 💪 I'm going to be doing the same if my lad gets declined!!!

Just got the 2nd letter stating it will take 15 weeks. Its like why waste the money sending them when a text or email would be more than enough 🙄

My letter came this morning. Low rate mobility but the most annoying thing is they said the end date was 2027 before for care and now saying 2025 for both. I don't know if I want to appeal yet.
Regarding pushchair we are near Halifax and applied to wheelchair services which was referred by paeds. William Merritt in Leeds is good too.
Also we applied for nappies to incontinence team through the paeds again. Takes ages for both keep chasing!

Thanks all for the advice! looks like I’ll be chasing up the paediatrician from Monday aswell as DLA and I have my boys ehcp review. Wish me Iuck😖😖

hoping to see loads of awards first thing mondayy!

Parking so I don’t lose the threads. 08/02 halfway there (hopefully)🙏🏼

Please fight, you can't give up!! Ring up ask for a copy of everything you sent this time, sit down and go through it all you will win the MR if you can meet each point 💪 and I'm sure you can!! As the Mr is being considered you DLA will carry on xx