DLA spending

[Anonmom812]

My daughter recently was awarded DLA.. She has just turned 16, the award is for £412 every 4 weeks...
She gets £25 a week of it for spending and another £20 a week for her bus ticket.
(I have tried giving it her weekly to help her learn how to budget as when she has it all at once she often tends to spend it all at once and then had none left for the rest of the month)
The rest of the money I split between extra food (she often won't eat the same as everyone else) music subscription for her (her special interest), savings etc (incase she needs clothes or other things etc)

She always gets to the end of the week and has ran out of money so am I being too tight with it?
I don't want to be controlling but I also don't want the money to be wasted on take aways and the corner shop

This is new to us so please any helpful suggestions or thoughts are welcome

@Firkinflea

Then you are lucky you can afford it.
My son received middle rate care for DLA and low rate mobility. He is now on the lowest rate for PIP.
Im sure many people would see what I spent his DLA on as middle class luxuries - eg tennis, swimming lessons, a personal trainer, because he never got the OT support he should have got so I got imaginative. Also private cycling tuition so he could be safe
Also lots of activities like theatre, music, cubs and scouts.
I have no problem justifying it because his history and developmental needs meant that he needed a huge amount of input. The additional tax credits helped me to work part time.
The result is a young man at university who will be a productive member of society and who needs me less and less to, as another poster put it, walk ahead of him.
He won't reapply for PIP when his award runs out next year.
The point being that the needs of disabled people and the resources available to their families varies enormously.
And good luck getting anything out of CAMHs. I've had three foster children in desperate need and got sweet FA for them.

Same here.

Dd spends her on, what some would percieve as, frivolous things.

Honestly, she should have some bloody joy in her life because her disability holds her back in so many ways.

Exactly

yes this is true for ours as well. He is an anxious little ball of stress who can barely manage his way through the day. So occasionally I spend DLA on a trip to the donkey sanctuary so he can pat a donkey.

The kid can't ride a bike, swim or tie his shoelaces. He gets so overwhelmed at his school that he often goes and hides under the sports hall like a bewildered puppy and the school more often than not calls me so I can persuade him to come out again. He's 15. I am so grateful for DLA which has enabled us to do whatever we can for him- plus give him some joy along the way. It's a true blessing for our family.

DLA is to be used to pay for whatever is needed as an adaptation due to your child's disability. We get lower level mobility and middle level care. There are lots of things I have to buy for my daughter that a NT teen wouldn't need just to cope with life and many things that I buy that need to be returned or disposed of because her sensory issues mean she can't use or wear them. This includes clothes (don't talk to me about socks and pant... how many types of socks did I buy before we found the one singular pair she can wear), supportive items such as ear defenders, toilet keys, orthopedic shoes (this is a separate additional issue), hearing aid batteries, special bedding, fidget toys and gadgets. We paid £1000+ for abortive dental care because she'd been waiting on the NHS for over 3 years and her teeth were incredibly painful but she needed sedation to get treatment (they were still unable to treat her). Her food choices are very limited and restricted to only things that I cook so whether I want to or not I'll be making a vat of bolognese tonight. She can't go out on her own without us hovering as back-up and I've made emergency trips to town to collect her when things go wrong on even the most basic outings with friends. We are having to home educate as school couldn't meet her needs but apparently her needs aren't significant enough to get her any support. That all costs money and limits how much I can work. I love her to bits but I really wish she'd managed in mainstream school so I wasn't having to try and juggle work and educating a tricky teenager. I wish she was able to do 9 GCSEs and not just 3. She has dreams and is very intelligent but she just can't keep herself together long enough in a day to get enough work done. How does she go to college, she can't leave the house? I am terrified for her future, not least what it will cost me into my old age to support her. I spend well over the £400 I get each month on stuff that she needs and it still doesn't get her to the same place a "normal" 14 year old would be at.

You said it much better than I could @TreeDudette

I’ve been emailing my MP for years.

My children’s autism, ARFID and ADHD assessments weren’t through CAMHS as they don’t offer that service in my county. They just offer support for anxiety and mental health but the threshold appears to be suicide. I assumed it was a typo the first time they turned down by child but apparently not. Now, after being seen by CAMHS for two years, they haven’t been able to actually offer anything other than support towards the EHCP.

There are some people who are lucky enough to be in a privileged position where they genuinely have no idea of the realities that some others go through, even if they have children with the same diagnosis (because the impacts are so varied).

Do you know the waiting list for CAHMS?

Yes, and I ensure my local politicians are working, working, working to make it better. What won’t help is money being funnelled into the hands of parents to spend as they wish, instead of going to improve public services to ensure they work with a laser focus on supplying the services disabled people need.

And how long do children have to wait for the politicians to actually make it better.

We have already missed most of the compulsory school years waiting for actual support that is needed. We have already waited too long. We can not get those years back. My child will forever be damaged by lack of education and lack of support.
I would choose appropriate education and appropriate support, appropriate medical treatment over DLA every single time but seeing asy child has been failed by education, failed by support and failed by medical professionals the DLA is a small amount of financial support which has enabled us to provide child with a fraction of what they need

I am grateful for DLA but I would have much preferred not needing it and child's needs being met

Scope’s disability price tag research show to have the same standard of living on average disabled households need an extra £1,095 each month.

For most, disability benefits don’t touch the sides. They don’t for us and DC have all their therapies in EHCPs so don’t need them funding privately.

But that is not the reality of what will happen to the money. Ultimately, overwhelmingly, the DLA money doesn’t cover the amount the household is financially detrimented by the child.

The government would likely end up with higher costs for its children whose parents are unable to cope.

Then you're the exception. Your MP helped, good. I spend an overwhelming amount of time in my job lobbying, lobbying, and more lobbying- emails, calls, letters, unending; and supporting clients to do the same. And before you say its because you are more proactive and forceful than others- so am I and it is rare, so rare, that parents I support get a fast result. As government consistently and repeatedly proves that they cannot be trusted to manage our finances effectively I would rather parent carers do have some level of financial support to meet additional needs. A far from perfect set up, maybe, but far preferable to poverty in disabled households. As much as you may wish it to be so, your personal experience is not the experience of the majority of families in this situation, and empathy goes a long way rather than "I did it, it is so, so it must be so for everyone else" .

"I have a disabled child. I spend thousands of pounds every year on their care. I don’t claim a penny because I don’t need to"

Well done you for being so wealthy.

Why are you so bitter? The poor girl has a disability!

This! There are so many things my children cannot do and I spend it on things that bring them happiness.

You are obviously loaded. Good on you. I don't understand why you are so bitter towards other families though. The overall majority of children with complex needs have a parent who has been forced to leave employment/or cut hours. It's one of the groups in the whole kingdom with the highest poverty levels through now fault of their own. It's not that hard to fathom that someone who has to leave work and is paid the grand sum of £83 per week carers allowance doesn't have the same disposable income.

I spend the money to give my child as close to a fair shot as I can create. For her it’s private dermatology as her eczema is really difficult (compounded by her autism as the sensory challenges of autism are clashing with the things you need to do for eczema). I also use it to get her the specific clothes she feels best in (like others, that took a while to find), and fidget toys and such to keep her in school. I also spend it on specific tickets for the theatre as she hates being surrounded by people but theatre brings her joy so front row on the side. And extra dance lessons as the busier she is, the better she feels. Oh and pony therapy as she has selective mutism so traditional therapy is useless. I am grateful to have the ability to do everything I can for her as in general, she finds everything about the world pretty difficult so the tiny things I can find to help are so important.

I agree with the above - I am aiming to give her as much as I can as a child and I think eventually she will be self sufficient and able to manage a lot of this herself. I think she’ll need some support if she goes on to college or university (she takes tests in a room by herself now), but I am hoping I’m giving her the tools she will need.

for what it’s worth I’ve been on the cahms waitlist for two years and counting. If I insist on moving up the list I’m just bumping someone else down so I’m just waiting for our turn.

We use DLA toward the additional household expenses with having a disabled child such as an additional bedroom, additional specialist equipment and much more expensive SEN childcare. I don’t give it to my child and can’t imagine doing so.

DLA is not compensation for suffering from a disability. Many children deserve 'compensation'. Children abused, children who receive very poor parenting, children from bitter divorced parents. They are all suffering g but that doesn't entitled them to compensation.

DLA is intended ro be spend on addition costs that are a direct result of the child's disability. We are lucky that as a society, we recognise that some disabled children have additional needs that require additional costs.

Sadly it's become a mean of just additional income for a nu.ber of families, with no shame at all that it used as such. Even some posters above are fine acknowledging it.

I think the word compensation is one you seem to want to use. The posts on here do not allude to that. In fact...you are the only one to use that word on here. Can you highlight the posts where it states "no shame" using it as just a means of additional income please? I've looked through and, can't find these posts.......?

I don't think my child deserves compensation for being disabled. I do think they should be compensated by the LA for all of the educational failings that the LA continue to fail my child.

My child disability does cost our household far more. Which is compounded by the fact I haven't been able to work properly for years.due to child needs. I previously was a high earner and therefore paid tax based on those earnings. I loved my job and would prefer to work. But as the LA won't provide an accessible education placement my child has been out of school for a long time and this means I can not hold down a job.
So not only do we have increased costs we have a huge reduction in income to contend with.

What do you want families like ours to do?

"I don’t give it to my child and can’t imagine doing so."

When your child is 16 you may have to.

Again, that is a form of privilege that you have, that you have the mental bandwidth, no doubt enough energy, and time, to devote time to enable you to lobby your MP's, and make them work for you. A lot of people raising a child with disabilities, are just about managing to cope, without having to do all the extra that comes with having to advocate, get treatments, education etc. We are all different people, with different levels of manageability.