FIL comments about son's DLA

[WWYDNameChange]

First of all, apologies if this doesn't end up in paragraphs, it should have them, but the app always messes them up for me!

DS is 4 and severely Autistic. He's non verbal, doesn't understand language and can be extremely difficult to manage when out and about. We're currently hiring a SEN pram which is costing us a fortune whilst we wait for special twin one to be made (DS2 is almost 2 and also on the pathway)

Anyway. We see PIL maybe 3 times a month by their request. Tbh, the visits are always a bit stressful as FIL seems very unaware and unsympathetic towards his grandson. FWIW his youngest daughter is only 5 and StepMIL is a childminder, so it's not as if he's not used to being around small children or anything.

FIL seems obsessed with money and seems to 'jokingly' go on about what benefits we get. Even though myself and my Husband don't even claim half the stuff we're entitled to because we get by okay.

Now that our son is 4, we decided to apply for Hight Rate Mobility DLA. We spent months doing the form, which is a gruelling process, gathering all types of reports from different people and even sent in a mandatory reconsideration after he was rejected.

This week, the DLA have awarded DS high rate care and high rate mobility until 2031. I honestly sobbed for four hours with relief. This is absolutely life changing for us, we'll be able to order a car that's safe and big enough for the equipment we need to bring with us, as well as cutting down on the costs of taxis and trains (currently can't afford to run a car at all) DS has several appointments a month, all 10 miles away from home. It's currently a 3 hour round trip on the bus, whereas it's 20 minutes in the car. My Mum and Dad help out where they can, often with lifts and emotional support as they can't physically look either DS.

Anyway. DH phoned FIL to tell him the good news, my parents were over the moon for us and understand how hard we worked to get DS what he deserved. FIL's first and only comment was, 'Well my taxes better not be paying for it.'
Is this how people really feel? Is this what everyone will think of us? Will people really feel resentment at a disabled child being entitled to a mobility car to ensure his safety and quality of life?

I feel so hurt. I half want to give him the DLA form and tell him he's lucky his daughter doesn't meet any of the criteria. This was a celebration for us, even if tainted with a bit of sadness that our 4 year old is now officially severely mentally impaired (that's the name of the criteria he falls under for DLA)

We're supposed to be visiting tomorrow, I don't really want to go, but feel like I need to say something? WWYD? Is there any advice? Or is this something we should just get used to?

@CaledonianQueen that's so helpful, thank you! We were scouting out a Peugeot 2008 as it has a massive boot and this huge big sun roof (with a blind) so DS would love looking out of that, plus it has mood lighting in the roof which will be so calming for him.

The equipment is mainly prams. Honestly, his pram is almost 5ft in length and even folded up it's still absolutely massive. In a few weeks we'll have a double version of it as DS2 is also on the pathway and has issues with balance and mobility.
We also have a carefully thought through breakdown survival kit, complete with spare reins, ear defenders and high viz jackets. We have had a sign made that says there's autistic children on board and that they won't understand danger in an emergency etc. Hoping to get seatbelt covers made for the two of them as well!

I’d rather taxes went to you and your son, rather than some of the other things they are spent on.

Incredible! What a stupid attitude to how taxes are spent. FIL needs a basic lesson in economics.

I'm glad my taxes go to you. Wishing you all the best

Just ignore him. I used to say ‘I’d rather we didn’t qualify for the car’ when we came across this. (ds1 is severely autistic, has severe learning disabilities, non-verbal, epilepsy..)

At 4 my MIL was asking why we hadn’t put ds1’s name down for the local private school and saying ‘he’ll be fine” a lot and was telling me I was ‘too negative’. He’s an adult now & he’s still non-verbal, severely autistic etc.

You grow a thick skin and learn to disatsnce yourself from people who are unhelpful. They get replaced by wonderful people who get it.

Enjoy the car.

Hooray! So glad you got it OP and enjoy every minute. Claim everything you with your head held high.

@Whatshallidonowpeople - have you really thought through that opinion? What do you think should happen to these children and their families? Destitution? That’s an appalling attitude - high rate DLA is not given out easily and anyone with a bit of a heart wouldn’t begrudge it. I’m a higher rate tax payer and am glad a tiny part of my taxes goes towards DLA. It should be more.

@Whatshallidonowpeople I know it's an unpopular view, but Yes, I don't see why the gov or tax payers should pay

Why? My son now needs 24 hour 2:1 care. In the community this costs around 5K a week. In hospital (where he is now) it costs more than double that. You expect families to pay for that? Without a car (which he’ll get again when he comes out of hospital - currently taken off him - which has caused a whole raft of issues) he would be back in hospital. That has been recognised at his latest review. He can’t take public transport & he needs to get out everyday. Even in hospital he is taken out everyday.

He can’t earn a living, though no fault of his own. He is extremely vulnerable. When community care fucks up he ends up in hospital for years costing the state considerablely more than double the cost of community care. Do we treat him as s pointless burden & continue locking him up for a huge amount of money? Or do we value his life, support him to live meaningfully in the community & not whinge because he has a ‘free’ car as part of that support.

How do you feel about wheelchairs? Growing children often need wheelchairs replaced regularly as they grow, often they wait so long the old chair is causing them damage. Is that something our taxes shouldn’t be going on? How about adapted vehicles so people in wheelchairs can have a car? Acceptable for the taxpayer to fund? Or should they just never go out (people with disabilities are often unable to afford the type of specialist car needed - it may be a 30k car).

You also seem ignorant about how the motability scheme runs. It is a charity, cars are leased and resold st the end of the lease. The cost to the ‘taxpayer’ comes from the payment of Higher Rate Mobility - which people get whether or not they have a car

FWIW OP in real life when I come across the ‘tax payer shouldn’t pay’ category I put in the ‘ignorant’ box and avoid them. If they’re incapable of seeing beyond their cozy life they’re really not going to understand the issues involved in properly supporting someone with complex needs.

As a car salesman, I see a lot of people on the Motability scheme. When I first did the Motability training, we were told never to assume about the disabilities. Just because someone looks ok today doesn't mean they were even able to get out of bed yesterday, so a "Motability car" isn't something to be ashamed of.

I also used to work for Peugeot and the 2008 would tick all your boxes.

It is annoying though when people get cars on the scheme and you just know it's not for them. Grandparents getting sports cars (and bringing their grandchildren along to "help" them choose for example.

Thelcon - a lot of cars have trackers now. I suspect all will soon. When Ds1 was carted off to hospital I made sure I rang motability to tell them they would see it parked (outside an empty house) and then used every other week for an 800 mile journey (to his hospital and back, so we could visit him). Since the car went back we hire cars to do the trip (mine is an ancient Peugeot 206 not capable of 16 hour round trips). We can afford to hire cars, god knows how people who can’t manage to visit their kids in hospital when they’re shipped off to the other side of the country. If they’re non-verbal they can’t easily keep in contact by phone....

I wouldn’t assume an older person isn’t driving a sports car tbh - most of the people I see driving sports cars are older.

@TheIcon oh that's good to know! We're ordering it today, no idea how long it'll take to be delivered. I'm still taking lessons, test is booked for the end of July, but the salesman said as I'm naming my Dad as an additional driver anyway, he can teach me in the new car!

Hi WWYDNameChange as someone who has spent 32 yrs prosecuting the scum of the earth who steal the taxes payers money thieving benefits they are not entitled to , I am THRILLED you have managed to jump through the ridiculous hoops put in place to try and ensure people like your son get what you and he deserve. Despite my very jaded view of the ease with which some people manage to steal money from the state. I am a very firm believer in the welfare state for EXACTLY the situation you are in.
It restored my belief that sometimes they actually get it right. Thank you !

You can show your FIL this post and tell him I am very happy to explain who is and who isn't 'stealing his taxes' ... and it definitely isn't his grandson . Perhaps he would like to swap caring for a NT child for a weekend and walk in your shoes for 48 hrs ? Then perhaps he can pass informed comment. !

@fontofnoknowledge I just wanted to say thank you for your kind post. I somehow managed to have two threads going (?) and only got one comment that was a little bit rude. Everyone else has been so supportive and reassuring that I've regularly had tears in my eyes (it's been a VERY emotional week haha)

We officially got the letter through yesterday and went and properly ordered our car. It's like it was made for DS, mood lighting, panoramic window and a tonne of boot space! Also so many amazing safety features that reassure me, being a new driver I was worried about a whole host of things, but this car will even assist me with hill starts!

I just wanted to thank each and every one of you. I'm still not entirely sure how to handle FIL, my family are disgusted with his comments and I think poor DH is still upset, although not surprised as his father has always been strangely jealous of everyone and everything. I just wish I could get it across to him that we'd give up all the money and cars in the world, if it meant our DS would live a happy and easy life. 💐💐💐💖

@WWYDNameChange I'm on Motability. You cannot learn to drive in the new car! The car can ONLY be used for journeys benefitting the disabled person

Also, you cannot name your father as the Main driver, that has to be you. Motability will cancel the order I'm afraid.

RSA Motability (Motability's insurers) will NOT Insure you on a provisional licence.

I'm also pretty certain there are only a small amount of vehicles you can have on Motability within the first year of getting your licence. Best to check that though.

Regardless, your biggest issue is putting it in your Dad's name. They won't accept it.

Don't mean to be all negative, I just know the Motability Scheme in & out x

Also, that car can ONLY be driven when the disabled person is in it, otherwise the insurance is void x

"Also, that car can ONLY be driven when the disabled person is in it, otherwise the insurance is void x"

That is incorrect.

@Fishstick Nope! Unless whoever is driving it, is doing something that benefits the disabled person. Ie: prescription etc

As previously stated.

Op I'm just trying to help. It's important you're aware of all the rules before you join the scheme.

Yes it has to benefit the disabled person which could include things like doing the family shop or driving to work. Families are also not expected to have another car to transport other children if that particular child happens not to be in the car.

Well that's not really Motability's problem. There's no mention of that on the website or in my pack or terms & conditions. Just that it has to benefit the disabled person. Those are the rules. In the event of an accident, unless it can be proven that the journey was to benefit the disabled person, then the insurance would be void unfortunately.

It's so infuriating what rubbish some dealers will say to make a sale. I've even been told by a Nissan dealership that I will "Own the vehicle after 3 years!" Thankfully I knew better!

There is no definitive list of what is " for the benefit of the disabled person". Misuse is depriving the disabled person of the use of the car.

Being able to use the car for other children would contribute to the smooth running of the household and so be of benefit to the disabled child.

OP, I've been reading here and there but haven't rtft, so apologies if this has already been said.
Meet fil with sarcasm each and every time - 'oh yes, we spend the extra money on alcohol, it's great!' or 'Well next week I'm going to buy a diamond tiara', 'As you know we really don't need it so we're going to go to the Caribbean, can you look after the kids while we're away?'
If he dares to say that's disgusting or ridiculous, just reply with 'no more so than what you've just said' and refuse to discuss it further.
I'm not being flippant - dc2 receives dla too. Sometimes you have to grow a hard shell and just flip this things back at people (although you really shouldn't have to with family ).
I really hope the car makes a change to your life. God knows the rigmarole that people have to go through to get dla now.