Disability paperwork is just getting more and more complicated

[elliejjtiny]

I can cope with having disabled dc and a disabled dh most of the time but the paperwork is getting more and more complicated. DLA forms are 60+ questions about every single medical test they have ever had, among other things. Everything has to be backed up with evidence from professionals. It takes me on average 2- 3 months to do a form. Then there are the ehcp forms which the LA keep arguing with us about. Autism assessments are like banging your head against a brick wall. 3 years on the waiting list, 9 months of questions to be told what you have known for years. But you can't not do it because although an autism diagnosis isn't worth a lot, a self diagnosis is worth nothing. We gave up the fight for respite care as it just wasn't worth it.

I've been trying to find day trips for the dc in the holidays as we are limited as to where we can go due to the dc needs. It costs us more than if the dc weren't disabled because we have 2 adult dc who would rather not come but can't be left alone. Plus the fuel etc on the bigger car. Normally we can get me and dh in for free or a discount because we are carers but now most places won't accept a dla letter as proof of disability anymore. Now they want this new nimbus card which means yet another form which needs renewing every 3 years and £15 each.

I can't remember the last time i didn't have at least 2 forms on my to do list. It just seems to get more complicated. Then of course there is the multiple appointments in various different places.

When I did the DLA I just backed it up with the autism assessment report.

Then renewal I attached a copy of EHCP.

That’s all my friends are doing now for dla.

Ds has moved to PIP and that renewal has been made easier!

I find the EHCP process so draining. Its not even good when its done.

I can explain the fear I feel when they update the ehcp after an annual review and it is blank in section i because its draft, and you simply have to pray hard that when you get the final one they haven't, on a whim, changed it to somewhere else.

I can't even begin to wrap my head around how do do a transition review for post 16. Im in cold sweats about it.

For the DLA form, have you looked at charities who can help you complete the forms? Or the Cerebra guide to complete it yourself?

What part of the EHCP process are you arguing with the LA about?

Places who want proof from Nimbus don’t necessarily want the paid for version. For lots of venues, Nimbus run a free version just for specific venues/their group.

It sounds like social care assessments would be worth it given you have 2 adult children who can’t be left alone. For their sake as much as yours.

@itsgettingweird you must have completed the PIP renewal with the old form. The new AR1 is more in-depth.

Totally understand as we have just finished the ehcpna forms (which no doubt will be rejected illegally meaning we will have to do appeal forms) after doing the dla forms. Then you have annual reviews and medical appointments, transport emails, and everything else.

I will say that have a look at the national disability card as we have found it great for being accepted at lots of places and also gives you discounts to lots of mainstream shops and it takes significantly less evidence to get it.

I hear you on this.

Also taking up a lot of my time is trying to book medical appointments & fetch prescriptions. 4 different medications (plus 2 supplements), none of them ready at the same time & the village pharmacy can never get them so I go a 15-minute drive away.

Plus it's all emotionally draining.

I'm sure you've tried everything, and I know it's not the main point of your post, but just in case it's helpful...

For the DLA form, I go through it and write out my answer into a separate word doc (with question numbers etc). Then each year i have to re-apply, I pull up that document and go through the new form and make any adjustments to the old application - add in any extra info, note changes. They don't always match perfectly but saves me a shed load of time because their needs haven't really changed much.

I did the PIP renewal last Feb. (2024) Has it been changed since then?

Thank you. With the ehcp we are arguing about money for our 11 year old. He has autism and emotional development delay (so he is emotionally like a 3 year old). Everything in section F is great, new secondary school has been brilliant but LA have given them band 4 funding which is about £4k a year to give him a full time 1-1 teaching assistant, OT, various interventions and some other stuff i can't remember. The school are fighting with the LA, not me but it's making me stressed out and i have been emailing the school as often as is polite to ask what's happening and the LA as well. LA keep saying that primary school managed without a 1-1, just a classroom assistant trying to be a ninja doing some 1-1 alongside being a TA but secondary school is different and he will be trusted to go between lessons etc without an adult if it's not funded.

I didn't know there was an alternative to the nimbus card, I'll have a look at that. I use the cerebra guide for dla already, it's really good. It's the evidence i struggle with the most. Younger 2 are easier as they have ehcps but trying to prove my adult son can't speak most of the time for his pip form is really hard. I remembered in the "class poem" the year 6 staff always write for the leavers service included the line "ds2 rarely says a thing" so i found that, photocopied it and sent it off.

he will be trusted to go between lessons etc without an adult if it's not funded.

This isn’t the case if it is detailed, specified and quantified in F. That is why you should focus on ensuring the provision is detailed, specified and quantified in F over the funding. If it is detailed, specified and quantified in F, it must be provided and can be enforced.

For an adult PIP claim, a poem from Y6 isn’t likely to be compelling evidence without other evidence. If DS can’t speak most of the time, has he been assessed by SALT and ongoing SALT input? If not, you should look at that. Have you discussed it with the GP (and college or other placement if DS attends)? If not, do both of those. If DS is a young adult, does he not have an EHCP? If not, request an EHCNA.

@itsgettingweird it has changed since then.

Thank you. Youngests section F has been checked, double checked and triple checked. If it's enforceable does that mean the LA have to pay for the provision or does that mean the school have to provide it without the money? The senco told me she has several children in the September 2025 year 7's who have ehcp's without the appropriate funding.

The ds who doesn't speak has virtually no support at all at the moment.

It means under section 42 of the Children and Families Act 2014, the LA is responsible for ensuring the provision is provided. That includes ensuring there is sufficient funding. If the provision isn’t provided, it means you can take enforcement action - emailing the DCS threatening JR, a pre-action letter, then JR proceedings if necessary.

If older DS is a young adult, request an EHCNA. Also, speak to the GP and look at a SALT referral.