What do people actually expect DLA to be spent on??

[Whoknowshey]

This comes off a thread I read recently where a poster was being criticised for spending DLA on a fridge .

Im curious as to what people think DLA / PIP should be spent on ? Due to various circumstances I am aware of what people spend it on and I also have a child in receipt PIP so I know how theirs gets spent . Some differs to how my child’s is spent. Some I agree with , some I don’t but the fact is it’s for the individuals needs and that varies massively. Especially with non physical disabilities it would be hard to spend it on things directly related to their needs but there are many ways in which it affects their lives that it can help with .

Some I have came across;

• theme park passes- the child cannot do what others can , going out with friends etc . The passes give the opportunity to enjoy childhood safely.
• Toys/ things for hyperfocuses - a hyper focus is a form of regulation . To some it may look like an obsession with a character but it’s actually a way for the individual to regulate.
• Towards the family income because parents cannot work.
• Furniture - lots can get destroyed due to the individuals issues.
• Save it towards the child’s future . The child may not ever be able to get a job and adult social care is appalling .

I think all those things are justified . But I have seen comments against that.

My child has PIP as a young adult. They have a part of the money as theirs to do with what they wish ( which can be wasted hence why they do not have it all and I am their appointee - but also they have no way of having extra money as cannot work nor claim any benefits , have to stay in education to hold on to that EHCP and to help with their life skills etc ) A part goes into the house because I care for them financially as though they are a child - yet usually parents do not have to do this with an adult child. They know exactly what they are paying for with this - rent, shopping etc, social groups. It doesn’t really touch what I spend on them as the majority actually goes on a mobility car , because they have to be taken to most places . This way they are paying bills etc as they see it - an itemised of what they pay - because I know if they go in to supported living it will be eaten up by that and I don’t want them to get used to just having all that money, I think the way I do it is justified as it is for their needs ( food aversions so more expensive shop , get through clothes very quickly due to sensory issues , hyper focuses , social groups specific to their needs ) .

A bit fed up of seeing people attacked because someone doesn’t deem what they spend as “ for their needs “ yet those needs are so vast .

Interested on thoughts.

So disabilities have to be visible to be justified? My children have autism and, when they were younger, received DLA at the middle rate. There were some days when they might have "passed" as normal when we were out an about. That doesn't mean their disability was less severe. It doesn't mean that they didn't have a meltdown at home after being out and about.

We had an instance where the educational psychologist visited us at home to do an assessment. Our son was fantastic all the way through. He was articulate and cooperative, masked beautifully. The meltdown kicked off even before she got to he car, actually as we were saying goodbye to her on the doorstep!

We don't have thousands to spend on our autistic DS because his autism has severely reduced our income. He isn't attending school at the moment due to EBSA and we can't leave him alone for more than 20mins, maybe half an hour, because he can't look after himself like the average 12 year old could.

The DLA currently is paying for counselling because he's been suicidal since the start of the year and has self harmed but CAMHS won't do anything.

It also allows us to spend money we otherwise don't have, to try and find shoes that he can tolerate - it's fine if he realises they're no good straight away, we can send them back, but sometimes he insists they're fine, wears them outside and realises they're not. It also lets us buy clothes as they don't last long - apart from the fact he won't get changed very often so lives in the same clothes for about a week, he also chews or picks holes in them.

I've just been made redundant - which has really increased DS damaging his clothes - but before that our combined net income not including the DLA was, 25,000. If we were both full time on NMW our combined net income would have been more like £40,000 according to a quick Google.

It’s to do with sensory experience, if my DD gets cold she feels like her skin is burning. She can wear all the jumpers and tights etc but her hands and face feel the cold in an extreme way which means in turn she will scratch and pick her skin until it bleeds. She needs a warm house, warmer than suits my menopausal self, sadly.

Then you must live in a fantastic local authority if you are unaware that many schools fail Sen kids massively, and there is NO provision for as yet undiagnosed ( 4 year wait for us so far) autistic kids who are forced to attend mainstream that does not work for them. I've had to physically wrestle my DD into school on a daily basis purely so I can go to work. Some days the fight was too much and I couldn't do it to her.

Oh right, so her body is same temp as other people but it feels cold to her. My sister thinks I'm autistic, but I don't like hot rooms and prefer cool rooms and warm clothes. So I'm not autistic 😃

Same here. I’ve just taken part in a thread about the abysmal state of provision for children who have disruptive and violent tendencies because of spectrum disability. I’m absolutely astounded by the level of ignorance as to how much provision is actually available and the lack of awareness of how desperate things can get for the families involved. I’m getting the same sense of despair here because some commenters clearly have no experience of disability but still feel qualified to comment on how disabled people should be spending their benefits. It’s depressing.

My kid developed her disability rather than being born with it. So it was easy to see the difference.

My income (self employed) suddenly dropped like a stone. I still work PT when I'd now likely be back to FT. This is likely to continue.

Swimming classes are 3x the price to accommodate her very specific needs.
There's horse therapy.
Incontinence supplies, additional laundry ect.
Endless appointments.
Needing a bigger car to accommodate a mobility pushchair.
Having to drive everywhere because of mobility issues.
Booking overnights when going places because we have to pace her activity levels.
Travel insurance (when we could get it...) was £1000+ for a week.

The DLA goes in the pot. But the pot is very much depleted because of her needs.

There are a lot of co morbidity with autism so there isnt always a neat cut off where you can say this bit is autudm this bit is the associated hypermobility.

Also we were home more. No school place to go to, no afterschool care. So we heated the house because we were in it..

I think that's very easy for you to say when you clearly have a high income. Many families don't have an income of £60k a year and their child's neurodiversity is very disabling and expensive. My 23 year old neurodivergent son has limited continence which obviously means extra laundry costs, along with extra clothes etc.

I've known families lose their homes and be forced into bankruptcy due to their child's needs (and the failures in the education system). Most families don't have thousands extra to spend on their ND child. Most families are actually struggling to pay the electric bill, never mind the additional costs of raising a disabled child.

I'll be honest, I don't understand why we have this conversation. David Cameron, a multi millionaire with the benefit of generational wealth claimed DLA for his son. I'm fairly certain that he could have absorbed the extra costs of having a disabled child.

The joy of autism is that it presents completely differently for different people. My DD can’t tolerate the cold, my friends child is also autistic and overheats very easily. Thankfully for me it’s easier to warm a room up than it is to cool a room down. She had absolute hell this summer.

"Not criticising, just interested. Why do autistic children need warmer homes?"

Ds is an autistic adult living in a supported living house. His carers are on waking nights and so the heating is higher than it would be if everyone was in bed. He has to pay for this.

Transport and cleaning I guess

I suspect most people think PIP/DLA is designed to cover medical items, mobility equipment or to fund a care-giver, and are happy with that concept. The poster I was initially replying to has a DS with type 1. The NHS covers the cost of medical equipment - the PIP is claimed on top & spent on swimming and ju jitsu classes. Others in similar situations that they are aware of spend it on computer games. I was querying whether this approach is sustainable.

You do realise neuro diversity is a huge spectrum right ?
My 15 year is autistic ,he's non verbal, can only communicate on a very basic level, has extremely challenging behaviour goes to a special school for children with severe and profound learning disabilities, will always need 1: 1 support and will never live independently, please tell me how he NOT disabled?

It's perfectly reasonable to spend it on a fridge to be honest. Whilst an absolute ballache, if my fridge died tomorrow I could mange until I could afford a new one - I don't need to store medication in it and I can access a supermarket and shop daily if I need to. Someone with a disability where either of those things aren't case would be perfectly justifiable in using PIP to buy a new fridge.

All of which has nothing to do with the author of that post, who has nothing to feel guilty about
Where did I say she should feel guilty?

The point of my list is to say that disabled people are not the only ones who struggle in life and deserve better than what fate has handed them. Nobody should feel guilty but one should not automatically see themselves as worse of and therefore more deserving due to disability.

Yes this. I have a friend who is diabetic. She works and manages it with medication. Her sister couldn’t - became obese, had a stroke and lives in a care home in her early 60’s.

Similarly, both my children have ASD/ADHD, but only one is significantly ‘disabled’ by it. My DS would not be eligible because his ASD/ADHD has not rendered him housebound, triggered gender dysphoria, been accompanied by significant comorbid MH issues such as anxiety, depression or suicidal ideation. He doesn’t roam the house at night wondering where the knives have been hidden, nor leave pans on lit hobs where a fire may start, or try -just once - to go out with friends on NY eve, have a meltdown, get found alone and in hysterics by the police, requiring a sober mum (‘cos I’d have been nuts to have a drink, wouldn’t I) to drive 50m into London at 2am to get her. Even though she is now in uni, my DH has changed his office base so that he is local - he has been less than 2m from her today and been to check on her. I’ve driven to get her at 3am already because she couldn’t cope with the evening crowds on the tubes, waited too long and got stranded in N London after they stopped running. But we live and we learn and she keeps trying. My DS needs support, severe chronic migraine management (his body shuts down this way when stressed or distressed) but he can cook a meal, etc. His sister just can’t - yet.

It’s not the diagnostic label but the impact it has on your life that is measured.

Income can be reduced because it’s often so much harder to secure childcare. My autistic DS can’t go into wraparound care at school as his 1-to-1 is only funded for school hours, childminders can’t cope with him and neither can family members (who happily care for my non-disabled child)

Also there have been plenty of threads on here recently about disruptive or violent SEN children at schools, with many agreeing they shouldn’t be allowed in school, and that it doesn’t matter if there is nowhere else for them to go. You have to recognise that means parents even more reliant on welfare.

It’s not about being worse off, or more deserving. There are various safety nets for people who are down on their luck, people can gain education, work towards employment/better employment - in most cases there is something able bodied people can do to improve their lot.

That simply isn’t the case for people with disabilities at least not without additional barriers to overcome which disability benefits are intended to do.

Isn't this like asking how long is a piece of string? My sons DLA has gone on private therapy as he has blue badge. Private tutor as he was illiterate at 11. I'm sure people will begrudge us trying to get a 11 year old reading or feel jealous we have a blue badge and get dla. But those people quite frankly are a bit sick in the head. Would they really swop a healthy child who can read and write for this? I'd never wish this on any child. Ever. I took him shopping at the weekend with his 11 year old sister. He walked out of the shop. I had to get her to chase him and stop him. I was shaking by the time we left wondering I'd I should stop taking them both out. Feeling guilty she can run faster than me and was right then in that moment his carer effectively.

Who would want that? His life is fucked and in turn we are all fucked. I told dd one day she can leave for uni. I can't. He can't.

I think the majority of it should be spent on things directly related to the disability. Therapy, aides, carers, supported living.

My SD said she would need PIP because ADHD made her more easily bored and so she "needed" to go to F1 events and concerts.

That's like me saying I need it because I am always losing things, making impulsive spending decisions, and forgetting to challenge rises in insurance bills, or to eat the veg in the back of the fridge. Having ADHD is more expensive for a number of reasons but I absolutely do not need a benefit which is supposed to be for people who need real help to live a moderately comfortable life.

You know a child who does yet have a diagnosis and parents with their head in the sand

It isn't generally not for adults anyway ,my oldest son has type 3c diabetes treated as type 1 he definitely wouldn't qualify for PIP HTH.

@homephonea your post assuming our children get a place in school and are therefore in school is ignorant at best .... you demonstrate a lack of empathy. Horrid. And I pay 50% tax, have a SEN child and its fucking hard for me. And I don't have to worry about food and heat. Yukky person

I’ve received DLA/PIP since the age of 3 due to being born with a physical disability which will only get worse with age.
My mother received the DLA on my behalf until I was 16. When I got to 16 and the money was put to my name she had a conversation with me where I was told half of my DLA would be used as rent to her and then from my half I was told to split and give half of that to my younger brother. I was keeping £80 a month of it. I didn’t know any different, until of course the £80 wasn’t really doing much for me, I wanted to learn to drive as I was so limited with mobility. I needed more expensive shoes to give my ankles and feet support etc. I didn’t know why I couldn’t afford it until I started chatting with someone of a similar age who asked what money and I had and what I was doing with it, they were horrified when i explained how the money for my disability was split with a quarter being paid to my brother. I do think that there are still people in that same circumstance where the family is profiting from the disabled person in the house, and that should be checked.

Now many years later my pip is spent on fuel, I use my car for everything, extra heating as I can’t be cold, I have 2-3 showers a day due to hygiene reasons, a wheelchair to charge, I have to pay a portion of my care costs to the council, and again any footwear and clothing alterations.

I do honestly think as a disabled person that grew up that the money should be put separately, used for petrol for hospital costs, therapies, and any extra costs on utilities for extra washing or heating. Anything left it would be an idea to save for the child as they get older, especially now when there’s so much of an extra cost to a disabled adult. That would be what I’d do knowing what I know and if I had a disabled child.