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'm in a similar position, I'm also going through divorce and know that when DD turns 16 she might not get PIP, so I want yo put money away for her future. She doesn't need as much day to day, so it mainly supplements my income as I work part time.

I'm just putting as much as possible into her child trust fund ISA. It's a government one, she's 14 so they were being set up then.

I took one out for DS a few years ago separately as the government ones had stopped then, so same for him.

I use shepherds friendly for his.

DLA isnt supposed to be saved. You get it specifically to cover the additional costs of having a disability.

They don't check how you spend it but I'm not sure where you stand if you save it. At the very least I guess they could say you don't need it.

But anyway atm your daughter is 5. It is easier to spend the money as they get older and may be more socially isolated. We used to buy a merlin annual pass and go to theme parks, for example. Odeon limitless membership. National Trust membership. Kew Gardens. Horse riding lessons. Rock climbing 1 to 1 sessions.

Otherwise our daughter was just here with us.

Depends on your daughter's needs of course.

We have a trust with mencap btw but that is for the house when we die. Anyway they have a brilliant pack you can request.

Thank you! It's so hard isn't it.

I was thinking of an ISA too, but my dd is so impulsive I've no idea what she'll be like with money when she's older, so I'd be worried about her spunking it all when she turns 18. That's why I liked the idea of the trust, because I could access it when she's 18.

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.

Chat gpt is silly, it has no understanding.

If you save this money one day your child will be in the same position re savings limits. Just use the money; don't overthink it. Ours just goes into the day to day pot.

Thank you. I'm not planning on saving it all. Just keeping it somewhere safe whilst I figure out what to do with it for the best, as I might use it for her education. Because of the disabled child element, I'd be over the savings limit with the back pay within a month.

I'm not overthinking it. It's a lot of money. The special needs trust stops the child being in the savings limit when they're older. I'm not trying to save it for when she's older, just for a few months whilst I figure out what to do with it.

I think the trusts are more relevant for people who have limited capacity. You haven’t mentioned your child’s needs so I can’t really comment on whether or not this is relevant.
Your daughters DLA would not be classed as income for you but if you have a significant back pay, I’d just open a children account in your daughters name and put the money there. She’s only 5. The chances are you will need to use for of her DLA for living costs as she gets older.

For universal credit you can only put savings into a child's account if it's an ISA which can't be accessed until they're 18.

If your daughter is struggling at school I’d be using that money to get EP, SALT and OT reports commisioned and use them to apply for or update an EHCP and pay for some specialist advice from an sen advocate or solicitor. My son is now going to an independent special school so it’s probably the best value for money I’ve ever spent. You shouldn’t pay for private school with it - her education needs should be met by the local authority but the schools can’t get the assessments to them see what the needs are. My boy was rejected by NHS for OT assessment but his report says he needs ongoing weekly therapy due to extremely high need so it’s being provided. I would aim to use the money to meet needs - she has many years of education so getting it right now will help her now and set her up as well as you can for the future.

I think you’re getting confused - this money is your daughters, you are able to manage it for her as her appointee. It will only affect your UC if you put it into your bank accounts.

There is nothing stopping you opening a regular children’s current and savings account and put her DLA money there for now.
When she gets to the age where she can apply for UC herself, then her savings will affect her claim for UC and you are correct there are limits to the amount of savings she can hold.

Hope people don't think I'm trying to be facetious.

I'm in a tricky position as I am unable to work at the moment due to my own disability and the amount of support my daughter needs, taking it out of me even more.

It's hard to think of what to spend the money on, as I meet a lot of her needs myself. I feel some play therapy might help her, and I don't know what else is out there which I can pay for which would really help her. It's mostly emotional support she needs.

The main worry I have, is that both of our disability benefits really depend on a decision maker understanding, every time they're renewed, so I'm conscious about holding some of this money back, in case my income drops dramatically in two years. It's not like I can just get a full time job to mitigate this worry. We were so lucky she was approved first time, without going to a tribunal or anything, which I hear happening so often, so I'm just trying to protect our near future and her ongoing needs.

Apologies, I’m getting confused now. Children cannot get regular bank accounts until 11 but you can open one for her that you look after, like this.

https://www.natwest.com/savings/first-saver.html

Any money you put into a child's bank account is still classed as your own savings for UC. They don't view it the way you or I might do. They only disregard it as your own money, if it goes into an account which can't be touched until the child is 18.

Benefits back pay is disregarded for a year

She has an SALT report and the school ignored it. The school refuse to believe she is struggling to the extent she is. The other day a senior lead team member grabbed my arm and pulled me away from the door when I was trying to relay some information to the teacher about my daughter being picked on. Daughter has selective mutism so can't tell the teacher when things happen. I've had a meeting about school refusal and they put in a plan for a teacher to be on the door, when dd goes in, and the class teacher has gone against this and told TA to not be at the door and banned me from going up to the classroom door, to force dd to walk through the corridor herself and into the classroom. I'm hesitant to change schools as you hear about it happening all over. Hence wanting to either home school or pay for some different kind of provision.

Thank you, that's really helpful to know. Can I move it into a savings account in my or dd's name, or does it have to be in my current account?

You can have an account for your daughter on UC. They do accept this. As long as if they were to look into the account and not see you using it all the time for your daily spends. So keep records of what it is spent on. My children have an account to put their birthday moneys in. It is not my money so is not counted for UC.
I’d say it is more a problem if you are saving DLA even if just for two years - it is to help her now with the things she needs more than a child without disabilities. it is not for saving

We save our sons DLA in an account in his name but that is managed by us for when it's needed. Over the years this has paid for things like private EP/SLT/OT assessments. The usual "day to day" added expense (private speech therapy, carer to accompany to clubs, 1:1 swimming lessons etc.) come out of our salary as we're fortunate to be able to absorb that cost.

I would think carefully about how and where you save it if you decide to do so. Something like an ISA in your daughters name may make the money inaccessible and give her a lump sum at 18 which she may or may not be financially mature enough to manage.

Too slow to edit, but another thing we've set up is a junior pension that we pay into each month as we have no idea how independent he'll be as an adult

You have to be careful with income if they are going to be on benefits when older. Adult social care is means tested.

The capital limit is £16K, not £6K.

I want to come back to the point that it is not for saving. DLA is to go towards the additional expenses you have to meet your daughters needs. These needs must have been clear from your application. When our DS was young we used it to pay for 1:1 swimming (he couldn't cope in a group), and later a weekly session at a stables (again 1:1) and the many other additional expenses. My DS is now 20 and needs support from SS to have independence in the community. I would warn against your daughter building savings as in the future SS will only be increasing her contributions to her care.

Hiya, thanks for this- what is a junior pension?

Yes, I understand this, I'm talking about the backpay here. I've already met the needs of those months by scrimping and saving, for which I'm being paid back now.

You say "backpay of a few thousand pounds". Surely that is below £6k (I wouldn't call 6 "a few") and certainly below £16k, the level at which you receive no benefits at all.

So save the backpay if you want, declare it as backpay for the first year so that it is disregarded, and then - to be honest if you have that money - use it to supplement the reduction in benefit that will happen from having savings. Benefits are not there to enable you to have savings, they are to help you live.