To not want to spend my child's DLA on extra days in nursery?

[ShinyRedShoe]

On the provision that he is awarded in the first place that is.

He'll be turning three in January and has just received a diagnosis of autism. I have been encouraged by his nursery to apply for DLA which I plan to do, I'm just compiling all of his medical evidence and gathering letters for the application at the minute.

The nursery manager thinks it would be a good idea to use the (hypothetical at the moment) DLA money on extra days in nursery as she thinks it'll be good for him.

He currently receives the government 15 free hours funding and attends two days per week, I only work part time so I don't need the extra days childcare.

They keep chasing me up about it and asking if I've sent the application or heard anything back yet.

If DS awarded then I think I'd like to use the money on other things such as a safer sleeping bed, sensory items for the home and to make adaptations where I can to make life easier and more enjoyable for him.

AIBU to not want to use DLA to pay for additional childcare or do you think I should?

[Nettleskeins]

Dummies can delay speech, if you are already trying to encourage communication skills it might be counter productive. There are other ways to give him the sensory feedback, perhaps an OT or SALT could give evidence based advice on this. My niece , recently diagnosed with autism,who is intellectually able ,was highly dependent on dummy and her speech was delayed considerably. I think it is a balancing act, the frustration from not being able to communicate can mean child relies more and more on comforting tactics.

Definitely have child at home, rather than extra day in nursery, but try and get some decent advice on what interventions, play will encourage. 1:1 is hugely beneficial at this age for speech and communication and all sorts of things (!) , I have a teenager (now at uni and doing v well) and I don't regret the overprotective approach I took at that age, more home less childcare. He has autism.

[vinoandbrie]

Hi @ShinyRedShoe

I would keep nursery on side for now, as the DLA people may (and I mean may - no guarantee that they will) approach nursery for additional evidence, or with additional questions, even where nursery has already provided evidence for the initial application. It would be wise therefore to have nursery in a position where they feel the door is open to you potentially using the DLA for extra nursery hours.

As soon as the DLA award is made, the nursery manager can go whistle - get your child what they need by way of the things you mentioned, the bed and so on. Good luck!

[Nettleskeins]

Chewing, sucking and blowing, and singing are all good sensory alternatives to dummy. And other sleep associations my DD had a blankie made of lacy wool, D's had a teddy with knots, musical associations with sleep, favourite toys, weighted blankets. A book of (old-fashioned) nursery rhymes for daytime reading together is your friend here too, minus dummy.

[essexmum777]

I would spend the DLA on private speech therapy and I would do the makaton course asap because a 3 year old that can't communicate is going to get frustrated.

[pastandpresent]

My dc's nursery manager suggested the same, extra days at nursery. We did, and send dc 5 days a week 6 hours a day even I was sahp. He was suffering the selective mutism back then, and did him a great deal of good before starting school.

But how you spend money is up to you, although I don't think nursery manager is after extra money coming in. She could be like my dc's, genuinely thinking extra day would benefit your dc.

[ShinyRedShoe]

DS is on separate waiting lists for SALT and OT and I plan on utilising those therapies as much as I can, when we get around to being seen.

I do currently receive a very small amount of UC to supplement my wages but it's not by much as OH brings in a reasonable amount per month.

I do agree with keeping the nursery on side and that's what I've tried to do, I do the whole 'smiling and nodding' when they give me unrealistic instructions that I know won't be possible to enforce in practice.

Like a PP has suggested I do worry that they see me as not being proactive when that really isn't the case in reality. I fought hard to get DS to where he is and have very much been 'that' parent when it came to raising concerns, chasing up referrals etc. I pursued three different avenues to get DS under a paediatrican after repeated knock backs from our HV due to his age as she wanted to take a watch and wait approach.

I take on board the suggestions about him having a dummy and can appreciate what people are saying about them delaying speech. I've managed to reduce the amount of time DS has one but unfortunately removing it completely is out of the question at this stage as he's prone to self harming behaviours (which nursery have seen)

SansaClegane, I'm so sorry that you received such a shit response from DLA. I'm no expert but I would say without a shadow of a doubt that your child does qualify. Have you appealed? If not please do, that's simply unacceptable.

[ShinyRedShoe]

DS has some basic communication, he's able to ask for food, drinks, bed, blanket, bath etc. He can answer me when I ask him if he wants XYZ.

He is still classed as non verbal due to his limited vocabulary but he is able to make his needs known.

I would like to do the makaton class and told them this but they didn't follow up with me as they said they would. I haven't a clue who is hosting the course as they didn't give me any contact details.

[ArnoldBee]

Children can't get DLA until they are 3 anyway so I would get the nursery to back off.

[SinkGirl]

For the bed, request an assessment from social care OT. They made some recommendations for our twins which didn’t work so they’ve funded two Safety Sleepers which have been life changing. Do not buy one yourself until you’ve had the assessment - if you need one urgently (as we did after DT2 escaped the recommended bed tents and hurt himself) then New Life charity have loan beds - we got beds on loan from them while social care sorted out ordering ours, which has taken a while but they’ve just arrived. Would have cost us thousands.

Family Fund grants are much less - usually up to £500

[40weekswithno2]

@ArnoldBee that doesn't seem to be true, although maybe it's harder to evidence certain things under 3yo

www.gov.uk/disability-living-allowance-children/eligibility

[independentfriend]

Two out of seven days in the week at nursery is potentially not enough for him to become comfortable at nursery with the routine/staff/other children there. It might work better for him to do three or four 1/2 days, staying at about the same number of hours rather than increasing the total number of hours, as you're managing at home.

Given he's at a specialist independent nursery already and you have an autism diagnosis at 2, you would be well advised to request an EHC Needs Assessment in order that he gets an EHCP. An EHCP can specify the number of hours he should be at nursery (for his own educational reasons) per week - this could be anything up to "full time". Once provision is specified in an EHCP it is enforceable ie. the LA must fund it, so no need to worry about the standard 15/30 hour entitlement.

Autism being primarily a disorder of social communication, and the nursery's encouragement of Makaton, it is worth considering seeing a Speech and Language therapist privately. [Speech and Language Therapy is educational provision that goes into the EHCP and is enforceable, ie. must be funded by the LA, regardless of NHS availability]

For the nursery, some deflecting strategies might help: 'can't discuss that now, could we speak by telephone on $day' or if you're not a fan of telephones 'I'm trying to keep a lot of balls spinning at the minute, please could you email me and I'll take a look at it in a day or so?' or even "sorry, can't stop to talk right now, I'm late for an appointment"

I wouldn't use DLA for extra time at nursery; extra time at nursery will only help if he's got enough support there ie. SALT / OT programmes being implemented, a low enough staff:child ratio - all of this needs to be dealt with via an EHCP.

DLA for equipment you need at home, that's not readily available from the NHS is a good move.

[Sirzy]

@ArnoldBee

Children can't get DLA until they are 3 anyway so I would get the nursery to back off.

They can get the care element from 3 months old.

They can’t get the middle rate mobility until 3 or higher until 5

[SinkGirl]

My twins have just started full time at a specialist ASD school (they are 4, so a year before school age) - it’s absolutely the best thing for them, they have full time 1:1 there and there’s only one of me. It’s only been a few weeks and we are seeing changes already. I’ve done my best over the last 2.5 years with portage, SALT, OT etc but very difficult when they are so different - I was more like a full time therapist than a mum and I couldn’t keep it up.

If you can give him what he needs at home then that’s wonderful, no need for more nursery. If you qualify for 15 hours now you should qualify for 30 hours from the term after hes 3 no question.

My twins both get HRC DLA now but we’re on middle rate initially. Definitely use the Cerebra guide.

Social care can also do a section 17 child in need assessment - if more nursery hours are needed to ensure his development you could ask social care to fund them. Not a certainty but worth a go.

Various charities can help with various things - family fund are great for small one off items, Cauldwell do brilliant sensory equipment packs at a highly subsidised rate (need an OT to complete the form though), New Life for equipment loans and sometimes grants, and definitely get a social care OT assessment. They were going to give us a grant to convert our loft but unfortunately it wasn’t viable due to roof height - we are going to move to a bigger house though, and if any accessibility work is needed we should be able to get a grant (and it’s not means tested for children, if that’s a concern).

[x2boys]

Children absolutely can get DLA before three ,it may be harder because of high care needs for babies and toddlers ,but depending on diagnosis etc toddlers and babies have been awarded DLA .

[Kaliorphic]

It's up to you what you need to spend it on. Without a doubt though you will get people interfering with your decisions about what you think is best forever. Best get thick skinned now and start saying no. You'll save yourself a lot of emotional trauma.

[SinkGirl]

@ArnoldBee

Children can't get DLA until they are 3 anyway so I would get the nursery to back off.

Absolutely incorrect. You can apply for the care element from 3 months old (or earlier with certain conditions). Mobility starts at 3, and only higher rate mobility is available then, and lower rate mobility from 5.

OP, I second the comment above about an EHCP application - although it’s supposed to be a 20 week process, there are 3 points where you may need to appeal. It has taken me over 12 months to get ours, appeal contents and placement and get them into the right school. It’s brilliant you can access a SEN nursery without one (there are none here) but definitely discuss with them the plan for an EHC needs assessment.

[CatMuffin]

Do what you think is best not the nursery who have a vested interest in him going more days

[Percypigsareyummy]

DLA applications seem to be processed very quickly at the moment, we received a decision within 10 days.

[NaturalBigDarkBrows]

He's at home more than he's at nursery so I'd spend it at home.

[ShinyRedShoe]

Thank you for the very helpful replies, they're much appreciated and I will be following up with the suggestions for sure.

I'm about to head out so will reply in more detail later on but to answer a PPs question, no he doesn't get SALT and OT at the nursery. That is to be accessed from outside. It's a shame as I do think he will benefit alot from both SALT and OT.

He's making great progress with speech as it is so I think having therapy would be wonderful for him. He has just this minute come and asked me for "crisps please" which I find amazing because not long ago I worried I would never hear his voice.

I took him his blanket through last night and he said "ok thank you bye"

[Bagelsandbrie]

@ArnoldBee

Children can't get DLA until they are 3 anyway so I would get the nursery to back off.

This is not true.

My son was given high rate care dla from 2 with no diagnosis at all - he had been referred to the paediatrician for autism assessment but didn’t receive his official diagnosis until 4.

[Calabasa]

If you DO get DLA, do let UC know, i'm still on Tax Credits as i was grandfathered in and haven't been switched, but it upped them signficantly (we get Higher Rate Car/Lower mobility) and i also get Carers Allowance and its a massive help as i can't work because of having to look after him.

[DubbinDobbin]

I would approach them and say regardless of the DLA outcome you won't be increasing his nursery sessions for the time-being so they shouldn't hold them for him. If you really feel you have to say something you could say you will be increasing the therapy you do with him and park it there.