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.

For mine RDA isn't just a hobby as well, it's therapy relating to balance and trying to strengthen her and increase stamina.

many autistic people struggle with temperature regulation due to sensory processing issues or interoception difficulties. The absolute fiasco in my house is that some of us are always freezing, others are always hot. So at any given time it’s likely there are multiple fans running in my house, but also the heating will be on. For myself it’s not unusual that have a fan blowing on my face/upper body, but I have a heated blanket on my lower half because of neuropathy from chemo. It costs a bloody fortune.

Are you joking? I’ve fought every year for 8 years for my DD to be educated. She attends school but in primary school lessons were largely inaccessible to her because of the way literacy and numeracy are taught.

She’s in specialist provision now and her school are very open that, regardless of ability, they don’t teach beyond Nat 2 level. I’m paying a bloody fortune on tutors so that she has any chance of being literate and numerate.

Disabled kids are more likely to be out of education full stop, there’s no advantage to be found.

Yes lots of people have challenges to overcome, I had more than most - including most of the ones you list - but I also took every opportunity open to me and have done well for myself, a combination of good fortune and very hard work . It’s entirely possible to overcome adversity. Disabled people also face potentially all the adversities you mention, with the addition of their disability.

Yes, I’ve just been cleared to allow me to go and get some lessons as my physios think it will help strengthen my core to allow me to walk with a prosthesis. My daughter has also had therapy with RDA and actually works for them part time now. They’ve been life altering for her.

Do it then. If you think it’s that easy then go and do it.

This. I had to homeschool my eldest for a year until we could find the right provision (different needs to your child, though). It meant my planned return to work never happened because when we did find a school it was a 1hr commute each way at silly oclock because afterwards I had to get my youngest back to his school. He never got to do after school clubs or playdates as he had to sit in the car while we drove to get his DSis. For 4 years I (and my youngest) spent 3-4hrs a day in a car. Returning to work - jeez even making it through a cup of coffee at a parent’s morning - was impossible. I was eligible to claim for carers’ allowance but didn’t as DH has a high paid job and I felt it was for people who needed it. But as a result I’ve been unable to work for 20 years (though I childminded for bit before this and volunteered with youth organisations) and am unlikely to find a job now after all this time. Claiming PIP for my DC was the least we - or rather she - was entitiled to.

I had a professional FT job 10 years ago, then had a term time role to try and accommodate DD, then I didn’t get my contract renewed as she stopped going to school.
5 years later I am trying to get another job (not in my original career as I am now too out of date apparently) as DD goes to college.
But it still needs to be one that allows me to drive her, take time off when she has a major meltdown, am available for appointments, and I have to be there when she offloads for an hour when she gets home.

Sometimes we talk about how well she is doing/coping but it’s still not normal. If I look back at myself at 16 she is not the same at all, she needs constant support and despite me trying to push, is not independent. She went on a day trip with friends and I ended up driving 40 miles after an hour to get her as she freaked out. A teacher shouted today and she has obsessed about it for hours.

I’d much rather be working than doing this stuff.

@Homephonea

my autistic children are adults now, but in the case of my sons, They function at about the age of 12/13 and 3/4 respectively. one is non speaking, one is semi-verbal. One cannot be left alone at all, the other can’t be alone in the house but can be alone in his room which has been made safe.
One wets the bed still. He eats things that he shouldnt.x They live very structured lives and any variation from that can be utterly catastrophic for them. One has ARFID so his diet is very limited and when he’s stressed he can stop eating altogether.
so, in pip terms one cannot plan or manage a journey at all, the other cannot manage it independently. That accounts for mobility need.
one needs help with all daily living skills, the other needs supervising for some tasks he can do for himself, so that cover daily
living need.

my sister and my daughter are also both autistic but their struggles are very different. For my sister it caused severe agoraphobia, she did t leave the house for 12 years. She still can’t go on her own. My daughter is able to go out but she can’t manage public transport as she gets confused and gets lost and then is too scared to ask for help.
they both need help with daily living tasks, including cooking and personal care.
So tell me again that ND people shouldn’t qualify?

Ableist nonsense

Some neurodiverse kids are more disabled than those with physical disabilities .

I had to give up my professional registration. I had done post registration professional qualifications in my field. All gone. I spent until gone midnight last night trying to convince the emergency services that they did not need to send the ambulance that my daughter had called for. The first two people who talked to DD1 wouldn't listen to me about her ability level because she is verbal. The third person actually listened when I told them that she thought that certain specific medical terms meant 'pain'.

DD1 would absolutely love to work. She would be proud to work. She tortures herself because she knows that she's not able to work, but can't accept it. The last thing she needs is for people to begrudge her the money she needs to live.

Oh, and if she receives social care, she'll have an allowance for living costs, then social services will take 95% of the remainder. She'll be rolling in it.

My son's DLA goes into his private counselling (tried the NHS route, disaster), his swimming lessons and sometimes a diecast model plane as he's obsessed with planes. I work part-time so some of the money goes into "plugging holes" financially too. Without it , we would have to stop the therapy (which he/we value a lot) and small pleasures. We would notice a considerable dive in terms of being able to afford a day out a month for example.

Everyone is different of course.

"Currently I feel the exact opposite. Disability alone opens up safety nets that other people with very difficult circumstances, but no disability can access. Education is a perfect example."

My son was out of education for 6 months last year because no school or college would take him. Another disabled primary aged child in my family was out for a year because of no school place. No it doesn't open up safety nets.

And in both cases legal action was taken but the (different ) LAs gave no fucks.

For all those on this thread that are so against DLA, how many claim child benefit? For those that do, do you need it financially? And do you ensure that every penny of it goes directly to your child/on child expenses? No chance. Im struggling to see how this is any different. If people are entitled to it then they are awarded it. And they will spend it how they see fit for their family, that you all know nothing about. What sad times we live in that people are angry about disabled children getting a small amount of government support. Some incredible closed minded individuals here that clearly don’t know the struggle!

Many people think DLA (or pip) should be spent on what they think they would spend it on if they were in the claimants shoes. Despite never having been in those shoes.

Many other think it should be spent on the same things they spent theirs, or their child's, on, despite walking in entirely different shoes.

As soon as I saw the thread title, I knew it would attract spiteful comments from people with little understanding of what parenting a disabled child is really like — and I haven’t been disappointed. The ignorance and lack of empathy is extremely sad.

I would think a lot of people don’t think of money like “this £100 I’m spending comes from there and that £50 I’m spending comes from there…”? It’s just all put into an account and spent as needed or wanted. So if one or both partners work and receive salary and then they receive DLA how would they know if it was DLA or salary they spent on a fridge or a holiday or whatever?

We receive DLA for my son who is severely autistic (not sure if that’s the right way of wording it, but there we go). He is nonverbal.

his DLA helps fund his weekly private speech and language sessions (at £90 per 45 mins), as the nhs provision is woeful. It also paid for private reports (OT, S&LT & EP) to form part of his EHCP, again should be coming from the local authority but it’s not(!) we’ve also paid for OT visits to his nursery as they were struggling. And it’s paid for sensory /OT equipment and outdoor play equipment to help regulate him. It’s also paying for legal advice to help get his EHCP. In a way, but getting DLA it’s allowed us to fund therapies privately and therefore freeing up NHS space for those less able.

We are higher middle earners (not eligible for child benefit). But with high mortgage costs (for a 3 bed semi not a mansion) and living in the south east. For us DLA has been a godsend.

Yes exactly. It all goes into the same pot.

You can't compare DLA for a child and PIp very different criteria.

Appointments are really hard with a disability
i work FT, 40hrs but my job isn’t flexible

every 12 weeks I need bloods but they can only be done 8am - lunch time
also every 12 weeks I have a haematology appointment then a delivery of meds which can turn up any time over the next few days, can’t be delivered to work or I have to drive to collect it
then every 6 months is dermatology appointments, same with the meds except that’s a 70 mile round trip to collect
add in appointments for thyroid monitoring, the inevitable sickness with being immunocompromised plus gynae follow ups for stage 4 endo…

I use all my annual leave on appointments and blood tests but all of my conditions and meds have fatigue as part of it so I really need the leave to rest but…

add to that trying to change appointments is impossible and they keep being rearranged and cancelled and the places to collect meds aren’t open on a weekend or out of working hours. Fucking impossible sometimes

It’s an interesting debate ours hopes in to household pot. I don’t think I pay much more for DD ( life limiting illness complex needs including nursing care at home )
dla does help in terms of living in the situation and still being able to do things with her when I can’t work. I wouldn’t say it really goes on anything specific I mean yes at times but not all the time.

however without it we wouldn’t be able to live and I would have to go back to work and then … well they would have to pay alot more to cover nursing hours at home or she would need to go in to a hospice.

Haven't THFT but the average person has hobbies. A recent travel industry survey found that the average brit goes on 4 holidays a year. Poverty is a separate issue which needs to be taken seriously too but there aren't many people in this wealthy country that don't have leisure or breaks.

This totally. Not to mention, most people will have been spending money relating to that child's disability from the general pot anyway, long before DLA or PiP even arrived. We only put half aside separately as we anticipate expensive costs relating to our daughter's disability and the money there will pay part of that (not all - we will need to find about another £3000).

We paid for private school for 3 years because DS wasn’t offered a state education after his infant school placement was a total disaster. Eventually he was given a place at an independent special school, funded by our LA, but for those 3 years either we paid for private education or I gave up work to attempt to homeschool him. I’ve no doubt there will be people on this thread who are scandalised that we claimed DLA whilst paying for private school. They are probably the same posters who believe state education is available for all.