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.

All of which has nothing to do with the author of that post, who has nothing to feel guilty about.

The reason they are cash handouts is because disability is not one size fits all. Individual disabled people are best placed to decide how to spend that benefit money to best support how their disability affects them. And that’s what these benefits are meant to do. Take a look at the name of the benefit and it gives you a clue as to the intention behind it. Disability living allowance. Personal independence payment.

Living with significant disability means significant extra costs. These costs are different for everyone. They are not meant to be spent on specific equipment or aids and appliances. They are meant to go some way to removing the cost barriers that prevent disabled people from taking part in society on the same level as those without a disability. So your hard agree means nothing unless you are well acquainted with the extra costs involved and where they lie.

So if you can’t go to work as your child can’t attend nursery, how are you supposed to put food on the table?

working previously but child in hospital 31 nights out of 8 months, have to be with child as changing nappies etc, feeding.

child can’t go to nursery due to NG feeding and a couple of other factors

what is the £110 a week supposed to be for?

Carers save the state millions. No one ever wants to talk about that though

We spend far more on DSs’ needs than we receive in benefits. Some of their disability related costs include:

Higher electric costs - medical equipment (feed pumps, seating, bed, rise and fall bath, changing table, nebs, etc.), I have 2 DSs who have EOTAS/EOTIS, some of which is delivered from home so some days they are both home with up to 4 extra staff when others their age would be in school with no staff at home, DS1 has carers at home so sometimes there is 1 or 2 extra people in the house using electricity.

Higher gas costs - we need the heating on higher and longer for DSs’ medical conditions and DS1’s reduced mobility. Because I have 2 DC at home more during the day with their EOTAS/EOTIS packages the heating needs to be on more than if they attended schools - both for their needs and because there are other people working in the house.

Higher water costs - DS1’s clothes/bedding etc. need changing more than the average person. His specialist bath uses more water than many conventional baths. He also needs washing more. With carers and education staff in the house, there are more people using water.

Higher food costs - for medical reasons.

Independent assessments for EHCP purposes to hold the LA to account - although the LA contributed to these costs with the settlements from previous complaints.

Motability vehicle - monthly mobility component paid to motability, the AP and adaptations.

Car parking charges and fuel costs - we have to drive places we would otherwise walk. Not all car parks offer free blue badge parking. More hospital trips.

Equipment not otherwise funded - incontinence swim products, topping up the incontinence products provided because they aren’t enough even though we get more than many, SN buggy accessories (we got a grant for the SN buggy itself and some ‘accessories’ such as the pommel for between DS’s knees and rain cover but we bought other ‘accessories’ were needed such as a foot cosy), accessories for SN buggy that attaches to a bike (the buggy itself was funded by grants but we needed some other ‘accessories’), slide mitts. Topping up the funding to have a H-frame hoist because only a single track hoist was funded even though the OT recognised a H-frame would be better. All the things we buy in the hope they will help but don’t.

More extra curricular clubs - as physio/fitness and to aid emotional regulations/social skills/social interaction.

Medical assessments and treatment - one DS had an ADHD assessment privately and started ADHD medication privately. Although care has now been taken over by CAMHS/GP.

Costs associated with hospital admissions.

Thankfully, their therapies are funded via their EHCPs.

My daughter has to pay £112 for 5 hrs help a week with laundry, cleaning,errands .

Because she is bed bound and only gets 14 hrs a week personal care.

I’m sorry I really disagree that the struggling taxpayer is funding your son’s savings. People will be paying towards DLA who can’t afford to save for their own children. It’s just plain wrong. And most parents pay for clubs. That’s not really a disability expense.

I couldn’t care less what you think 😁. As you know, DLA is not means tested, and as a higher rate taxpayer myself I can’t get worked up about others using it as they see fit.

Scope’s latest disability price tag research shows disabled households need an extra £1,095 each month on average to have the same standard of living as non-disabled households
Of course Scope would come up with something like this. What criteria are they using to classify as standard of living? And which famirs did they select to represent their panel for comparaison? Whatever research this is, it certainly won't be scientifically reliable! It's the type of research that anyone with a purpose and in need of funding will be able to manipulate to conclude the message that is that of their charity!

All of what was going on ? The Tories were the architects of the shit we find ourselves in now. They were the ones who replaced adult DLA with PIP, which was supposed to save millions for the tax payer. Except that it was so badly designed that claimants couldn’t get a fair decision without recourse to expensive tribunal, and it allowed mental health claims for the first time with no real costing of the extra expense involved.

If my child didn’t have a disability I could work full time, I do work nearly full time but need flexibility in the week which reduces hours give. If I worked full time we would have a very nice life indeed
Ut surely you can appreciate interest that not all mothers of disabled children would inevitably be working FT if their child wasn't disabled. Also, many mothers of disabled children do manage to work FT. It's not black or white.

My DD is autistic, if you met her you’d probably think she was very able. However she’s extremely vulnerable. She can’t assess risk so being out in the community with friends is very difficult, she’ll do whatever anyone asks her to because she thinks that’s being kind. She’s vulnerable to sexual exploitation and indeed was groomed, age 12, in her specialist school where she had been placed specifically because of that risk. It took 4 weeks for a senior student to exploit that vulnerability. My DD can’t tell the time, tie her shoe laces, has no sense of direction.

She is articulate, very confident and loves performing arts. If you saw her on stage you’d never guess just how vulnerable she is but she is.

I agree with you. Someone on the thread mentioned horse lessons, and a few other expensive hobbies. There are other less expensive hobbies where you can develop motor and other skills!

The increase in claimants from 3 million to 4 million over a five year period.

Thats what I said - that was overseen by the Tories.

How did other countries’ healthcare and social care systems deal with disabled people? How did they deal with people who became disabled? How did they deal with people who were unwell and at risk of becoming disabled if not treated?

My daughter didn’t see a single doctor, consultant HCP during covid. All the local services which kept her healthy were shut. We couldn’t just take her out for an hours walk twice a day or play games in the garden with her to keep her fit. The things she did for exercise closed down and these were not things we couldn’t supplement. As a result her physical and mental health deteriorated significantly. She ended up requiring a surgery post covid that could have been avoided.

With schools and social services closed, the early interventions that are available for children were not available. This will undoubtedly have led to more children subsequently having reached the point where they now qualify for benefits.

Adult services also being stopped will have had an impact. Someone with a chronic but manageable condition may well have deteriorated over the period of shutdowns. Covid hit us harder than many European countries, that will have an impact too.

This is not to say we shouldn’t have shutdown these services, but as always, nobody gave a thought to how this would impact on those who were facing health conditions or were already disabled. Instead of putting money away to deal with it in the future, it was spent of useless PPE and hospital equipment, a useless app, nightingale hospitals etc etc.

That’s the answer as to why, although I suspect you are asking the question because you don’t actually believe it has “doubled disability” and people are racking up to the PIP office with a bit of a limp and pocketing £££ so they can buy their big screen TV and holiday to Majorca.

It isn’t just Scope whose studies have come to this conclusion. There are several well respected disability charities who came to the same conclusion including Shine and Mencap. These are charities who represent some of the most severely disabled and vulnerable people in the country. Are you going to dismiss them all as unscientific ?

You can read more about their research, methodology and results on their website.

Scope’s research is accepted by the government.

This. People should ask themselves this every day.

So where's your scientifically reliable evidence of how much it really costs to be disabled?

It is for living as near normal a life as possible with a disability. The list is endless.........

For us my son's child disability payment helped us not go under financially while I could only work very minimally due to his frequent hospitalisations. Now he's older he still needs a lot of support so my working week is cobbled together. Monthly spending includes membership of trampoline parks and local softplays so we can go unlimited times because in weather too bad to go outside he still needs huge amounts of exercise and sensory input. It let us buy crash mats and weighted blankets for his bedroom and a seizure alarm and video monitor. It lets me run a second car, a very cheap runaround, so he can access appropriate after school activities, it lets us buy sensory friendly school uniform and replace it when it gets ruined from sensory seeking. A controversial spend may be that it pays for my youngest to do a class on a Saturday so my son has 2 hours uninterrupted time to attend play therapy with a parent. It let us upgrade his tablet to let him not get frustrated trying to access homework on seesaw making homework accessible. Coloured overlays for his dyslexia, extras as he loses them. Buying clothes more regularly as he has accelerated growth. Just bridges the gap a little between normal parenting expenses and the additional support he needs

My son has had a SEN statement due to Autism back in the 90s/00s. When he was about 9 the LEA cut his funding as he was ‘improving’. He wasn’t. I sought legal advice and appealed the decision, the LEA turned the appeal down so we went to a tribunal and won and were awarded a place in an IRU. It cost me £4000 in legal fees. When he was due to start secondary, the school we decided on was out of his catchment area so we weren’t entitled to transport there. I therefore reduced my hours at work under the new Flexible Working laws and drove him 15 miles to school each day and sometimes back home at night and onto work after dropping him off. His DLA helped towards the legal costs and got him a better education and also made up the reduction in my wages and increased petrol costs for 5 years to ensure he got a proper education and qualification

These are costs I wouldn’t have had if he wasn’t disabled

"All I need to do is claim DLA for my ND child and they can be us too!"

Assuming your child's needs are severe enough to get it.

We go to gigs of small shows of usually fairly niche bands, where 2 tickets cost £40 max, we can only go to a local small theatre yhat is accessible for me and my children are comfortable with, Theatre is local theatre autism friendly shows that cost £20 or so. I’m not talking Taylor swift and the west end, so you can retract those claws.

I am only speaking from my experience here but I know a few people in the groups I go to that do use their DLA/PIP for sessions with horses. You can have therapy sessions with horses. and some ND people have an affinity with them. They feel safe with them. A young person I knew with autism moved on from our groups as she got an apprenticeship working with horses.

The same argument you used on the last thread. It still doesn’t fly. Where the child is significantly disabled one parent usually ends up giving up work to become a full time carer, or reduces hours to be able to cope. And that is one of the reasons these benefits are paid. Disability costs money. Disabled people and their families are best placed to decide where that cost lies and how best to address it. That’s why disability benefits are paid in cash. To allow autonomy and choice.