Do you have a special needs trust for your child- SEN/DLA topic.

[Summerisgoinggreat]

Hi there,

My only daughter (5) recently started receiving higher rate DLA for selective mutism and autism, and I'm on Universal Credit, so I get the disabled child and carers elements also. This is including backpay of a few thousand pounds.

Because I'm on Universal Credit I have a savings limit of £6000. I am on Limited Capacity and Work Related Allowance, so the amount of UC I get is enough for bills and days out. I also pay for better help therapy for myself with this. It's not a high income, but I'm comfortable with it for our needs.

I haven't decided where to use the DLA yet, as just figuring out what to prioritise. My dd is struggling at school so homeschooling with this money and getting tutors is one option. I'm also considering looking for some kind of part time school, like a Montessori or something, where she has less rigidity and higher teacher/student ratio, but I'm also hesitant to do this, as her award is for 2 years and what if I reapplied and she didn't get the same amount and had to take her out of school.

I was asking chat gpt for help and chat gpt suggested a special needs trust for my child for her DLA, whilst I figure out what to do with the money, to best help her, so that it doesn't take me over the savings limit for UC.

Does anyone use one of these?

Any suggestions for the money would also be amazing. We were taking a lot of taxis when I applied for DLA, as dd and I struggled to walk from the bus stop, so this was my plan for the money. But I've just moved via homeswap to somewhere next to a train station and bus stop, which came up after I applied. I probably wouldn't get a car with the money, as where I live is small with heavy traffic, and I'd be worried about dd having a meltdown, whilst I was driving. We have wrist reins for when we go anywhere busy (not often!). I'm thinking to put some nice lamps and sensory things in her room and buy her a floor bed as she can't sleep still and rolls out of bed. I already buy melatonin online for sleep and she has a weighted blanket.

I thought back pay was only 3 months? If it is over a year then 5,000ish if she is on the highest payment - so a simple savings account that you can access?

It's backdated to when they scanned your forms. So mine is 18 weeks, plus 18 weeks of UC child disability element and carer's element.

I'm also owed my next UC payment in just over week, so if they add the disability elements onto that, my bank account could tip over 6k. I don't know if your monthly money going into a current account, is included in the 6k limit.

It’s certainly not a crazy idea. You can get the same for adults too (eg if someone received an unexpected inheritance).

However, it’s much more complex than anything else you can implement and you’ll need some financial advice from someone who knows these trust in particular.
Depending on the amount you’re going to receive, it might or might not be worth doing too (even if it’s an amount big for you iyswim)

But I totally get why you’d want to dig it out further.

Monthly money is in lauded in the £6k.
But back payments are discounted for a while (about 1 year I think)

I appreciate people saying the money isn't to be saved. Which I agree with. But my point is that some months I might need more money for my dd's care needs than others. For example, I might spend a month in the winter mostly at home, just doing movies and taking her swimming/soft play etc at the weekends, and then another month I might have a holiday where I want to pay to bring a carer with me for support, as her needs are greater away from home. Or in the summer holidays we might do a lot of activities to stop her getting bored as she needs a lot of stimulus, and I might need to hire someone to help me during the holidays. So to have a pot of DLA which I can dip in and out of as her needs change, would be essential for that. I'm not talking about saving for a house or anything like that, just saving some months, for the months which have greater costs.

In the UK it’s called a ‘Vulnerable Beneficiary Trust’ - you’d have to get a solicitor to draw up deeds etc so can get expensive.

You don’t need the school to agree to you requesting an EHCNA. You can do that yourself now using the model letter IPSEA has on their website.

The DLA back payment can be disregarded for a year.

Be careful saving in DD’s name if she may not have capacity when older, may need means tested benefits herself when she is older &/or may need social care support when older. However, DD’s savings not being in a junior ISA doesn’t automatically mean it counts towards your UC capital despite what many believe. That is if DD is the beneficial owner of the savings.

A disabled person’s trust for DLA backpay is unlikely to be that helpful.

Yeah, thanks for getting it. I'm just trying to stretch the money out- not hoard it.

I'm going to give mencap a call tomorrow, I just wondered if anyone has done similar.

But if I took the money out of her account during her childhood for her needs, would UC not say that therefore that money is in my use?

You can ask for more info on this FB group (despite its name it’s open to anyone with a disability. It just started with ME/CFS). Information is accurate and reliable.

id ask them all of those questions btw. They’re great and will tell you if they don’t know rather than create bullshit

https://www.facebook.com/groups/278260135547189/?hoistedsectionheadertype=recentlyseen&multipermalinks=5924609384245541

No, not necessarily if DD is the beneficial owner.

Thank you! I think I'll bow out of this thread now, as I wasn't wanting to trigger anyone when it comes to benefits. I know it's a contentious topic on Mumsnet.

You couldn't DM me the name of the group could you? I've not been able to get the link to work.

@Summerisgoinggreat I don't think the idea of you receiving very necessary benefits is triggering. I think the idea of putting back dated DLA into a medium term savings plan rather than a bank account where it can be used support your daughter day to day is the bit that doesn't sit very well with everyone.

Try your local carer's association- they may offer benefits advice

@Summerisgoinggreat OP, if you get LCWRA then you shouldn't be entitled to the Carers element of UC. Just the disabled child element. I have a child on DLA and whilst I do get the disabled child element, I was told I am not entitled to the Carer's element as I receive LCWRA

If you are getting the carers element as well as LCWRA then I'd be checking with UC because you may end up with a MASSIVE overpayment bill and they will demand that back immediately

@Summerisgoinggreat I’ve PM you.