DLA guilt

[Opal93]

I’ve posted a few threads before about how guilty I felt for claiming DLA for my autistic son, and many people felt the same, both people on MN and whom I’ve spoken to IRL and many people actually admitted they put off applying completely because of how guilty they felt. I am slowly feeling a lot less guilty, this may be because we have had a very tough few weeks with my son and compare him to a typical child his age and it’s blatantly obvious he struggles, also I’ve stopped seeing it as “getting money for looking after him” and more as “his money” as it’s for him, and it actually has improved his quality of life so that has definitely eased the guilt. But I do wonder what contributes to so many people having guilty feelings towards receiving disability benefits. Could it be negative attitude from others? I’ve had a lot of people query why my son gets it when he’s “not that bad” or “can walk on his own”. Is it filling in the dreaded form where you have to face the reality of how delayed your child truly is? Also I think for me it was because life with my son is so “normal” to us and so I didn’t feel like we were doing anything out of the ordinary but in actual fact we have to do so so much more, and now that his younger brother is much more independent than him that hits home a lot more.

My daughter has high care DLA (no mobility), and I know people raise eyebrows at it because for appearances she is perfectly fine, they don’t see the care behind the scenes or what is going on in her body. I now just think ‘fuck them’- they aren’t her doctors.

The constant propaganda that benefit recipients are scroungers and dishonest has crept in your mind somewhere.
You have nothing to feel guilty about.

I think it has a stigma because it's a benefit. People look down on others if they get any form of benefit. (Unless they get it to)

It's for your child. You should never feel guilty in doing somthing to help your child. Don't make your child go without because of other people. They are the problem not you . I have had simlar comments to you. I think sod them.

Autism varys so much and it's hard to understand my 6 year old was diagnosed in February. I don't fully understand it myself. So I guess it's hard for others to understand it as well. But that's all the more reason they should step back and stop judging.

I am one of those who feels guilty about receiving DLA for ds and for the blue badge we recently got for him (he is 10 and has ASD and is not really reliable around cars etc). I got questioned about using a blue badge space by using a nosy neighbour just before half term so was feeling a bit sensitive about it.

This week we have been on holiday and that blue badge has made such a difference to our lives. So stuff it. The problem is is that this is our 'normal' so we often don't appreciate how tough things are. DLA and blue badges only a small way to help.

My son has had DLA (now PIP) since he was 2..he's in his 20s now.
He can walk and talk. But he's never going to leave home, he will always need support and he will be dependent on me, and one day, on one of his siblings forever. He has autism and some learning difficulties and mild physical ones too.
If someone judges.. they can fuck off frankly. His PIP contributes to him living here, pays for therapy for his OCD and also musical theatre tickets as that's his big obsession. I am grateful for it, but I don't feel guilty about it in the slightest.His life is never going to be typical, and it has to be managed in every way by me...that's the reality of having a disabled child.
I love him with everything in me, and he has been the centre point of our family in so many ways (my other kids are all in medical and special ed jobs now!) but it's not easy. And DLA HELPS!

Do not feel guilty. People can be jealous of the weirdest things!

My son is waiting on a review appointment with a peditrician and we are on a waitlist for OT and CAHMS. I think I feel pangs of guilt when I see children who are ill and have to get hospital treatment etc, because although my sons needs are very challenging he isn’t actually “sick” But then I remind myself autism isn’t a medical disability , he needs a lot more support from the educational/developmental side of things, he is statemented and at a special school with speech therapy and a one to one. I think it’s because although he is significantly delayed for his age I don’t see him as “sick” and his paediatrician discharged him two years ago, as medically speaking there wasn’t much he needed, I had to ask to be referred again. I think I felt guilty for a while because I took this to mean I shouldn’t be getting DLA for him as his pediatrician signed him off, but that doesn’t stop the thousand difficulties we have with every day life

You’ve summarised exactly how I feel and felt when I filled out the dla forms.
I think for me it’s what you said, this is normal life for us and it’s what I’m used to so claiming money for it was ‘hard’. I put of filling in the form for a year and when I did eventually do it I went to a carers centre who helped fill it out. I think I needed the validation from somebody else that what I was doing wasn’t wrong.
I used to worry about claiming it as my son becomes more able and independent, worried I’d feel like a fraud but as this has happened (which is amazing!) there have been new challenges to. With a better understanding of the world around him he has become less tolerant of things not adhering to his plan which leads to lashing out and violence.

I’ve also started seeing it as money for his very selective diet and that helps. He eats very few foods but he does love fresh fruit. I spend around £50 a week on this alone and seeing the money as funds to help with that makes it more bearable.

No idea how to vote... but YANBU to claim the DLA that your son is entitled to.

Your child wouldn’t have been awarded if they weren’t entitled. Do not feel guilty for providing what they need.

@TheQueef

The constant propaganda that benefit recipients are scroungers and dishonest has crept in your mind somewhere. You have nothing to feel guilty about.

This.

This government has vilified disabled people, especially those with hidden disabilities.

Myself and my son are on the highest rates of disability benefits long term - it is near impossible to get those awards now so it’s very clear we are more than entitled to them. I don’t ever tell anyone we know as our disabilities are such they aren’t obvious and I’m scared people will misjudge us and report us. I often don’t even use a blue badge when I’m entitled to use one because I can’t stand the negative comments.

There is a lot of negative judgement and misconception about disability benefits.

@BlessedBeTheFruitCake

Your child wouldn’t have been awarded if they weren’t entitled. Do not feel guilty for providing what they need.

This.

Never feel guilty. Ever.

I think the government have a very difficult job of deciding who is eligible for it. In my experience ( with adults rather than children) some people claim it because they don't understand the criteria and there is nothing else for them to claim. I have had two clients in my job this week who have applied for PIP without looking at the criteria and just because they had a diagnosis. They both admitted they had no problems currently, but want to continue with the claim. This kind of thing just clogs up the system for those who are eligible. Its often a case of trying to judge whether people are likely to have problems by the time they have their PIP assessment 3/ 4 / 5 months down the line. However in situation like yours where the disabilities are long term and he is likely always going to have problems then yes of course he is eligible and it would not have been awarded unless they had reviewed all the medical reports etc.

I think for me it was because life with my son is so “normal” to us and so I didn’t feel like we were doing anything out of the ordinary but in actual fact we have to do so so much more

This. 100% this. Plus all the stigma around benefits claimants and fear of being seen as fraudulent because there's no truly obvious physical disability.

My teen son has autism and gets middle rate care low rate mobility. He got it years before he was even diognosed as it goes on the need not the diognosis. I don't feel bad.

Iv never felt guilt bit have struggled to bring myself to fill in the form. In the end a charity worker persuaded me and helped me fill them in. I still HATE filling in the forms and usually leave it until the last minute but the money pays for 1:1 swimming, additional needs tutor etc

My son gets DLA, and my dh stays home to be there when he's needed.

If my son did not have a disability (mostly hidden autism) then my dh would be in a full time job. DLA helps us as a family.

My son has severe autism and learning disabilities,he gets HRC and HRM, autism I had to fight for the high rate,s at tribunal as he was previously on MRC and LRM ,I don't feel guilty at all ,he wouldn't get them if he wasent entitled.

I claim PIP and work full time with a good salary , I couldn’t care less what people think about it. I had many months where I couldn’t work or claim any benefits during years of chronic illness but have also paid a lot of tax through working when a lot of people would have accepted defeat.

My daughter is severely disabled, and even I felt
guilty claiming because we've never ever had to rely on help before. I also now claim carers allowance and will be having our house adapted. I can no longer work because she's very complex. Please don't ever feel guilty for receiving help you're entitled to - but I do know exactly where you're coming from!

I have never felt an iota of guilt about claiming DLA for my son.

We have different circumstances as he is adopted. He was badly let down by his LA and wouldn’t have ended up in such a shocking state if they had removed him earlier. They never funded his therapies either.

I’ve spent his DLA on things to develop his skills, independence, ability to function in society. He has gone from special school to mainstream college. He has been awarded PIP, and I expect that when this award expires we won’t claim again as he is doing so well.

Yanbu. I get that guilt. I get the horrors when a brown envelope comes through the door. I get the fear ALL THE TIME. it helps me pay for my car , extra clothing and bedding, even things like take aways when I just can’t physically or mentally cope with cooking or prepping a meal. I always feel like
I’m
Looking over my shoulder. Sometimes I can move on, other times I’m indoors for days or weeks at a time. People don’t see that. They only see me out when I’m out. I’ve had people checking up that I have a blue badge cos I dare to use disabled bays and I’m
Not over a certain age. I have had Nast note on my car stating I should be ashamed and I’ve been reported. People can’t see inside my body and mind. They don’t know what I’m going through. But sometimes I think I’m not disabled ‘enough’ and that somehow it’s all a big scam and I’m going to be in trouble. I do my housework that I can manage with the curtains closed because I’m scared I will be reported for scamming if people see me doing a bit of cleaning or hoovering. I always feel the need to justify myself. It’s a horrible feeling - the money helps me but I feel
Judged constantly.

Update: so just today, I’ve been kicked in the face by my son, he slammed a door on my hand, smeared his faeces all over his room and had a huge meltdown at my brothers house ending in my brother telling me not to bring him again because he scares his kids. To hell with feeling guilty, I’d pay every single penny of it back just to have a normal life for one day.

Ah I feel for you op. I’ve still got scars on my hands and arms from where I’ve been bitten so hard. It’s sometimes not until you try to do relatively “normal” things that you realise your life is anything but. We also have the smearing too so know how that feels.

That sounds so hard. I think the guilt of DLA, is because you would do what you do regardless of whether you got DLA or not. So it kind of feels like cheating (maybe not today for you though).