Am I a CF?

[AuntyJackiesBrothersSistersBoy]

I’ve posted this in Special Needs Chat too but am posting here for traffic.

My son is 17 and has severe autism. We’ve recently been given Direct Payments which is good. However, it’s costing me a fortune in terms of activities (usually bowling or mini golf) because I have to pay full price for DS and the adult carer. Obviously, I also need to pay travel costs/mileage for the PA. I’m finding it difficult.

I felt terrible today telling DS that he cannot do bowling 2/3 times a week because it’s very expensive.

Am I being unreasonable because I think there should be a concession of some sort. I don’t pay the PA (the council does) but I have to cover their costs/mileage etc and the summer holidays pretty much cleaned me out!

Anyone else in this position? Any advice? Am I a CF?

No totally understand - had exactly the same issue - had to pay for activity and food out - for the carer as well and it become too expensive - even the cinema was working out at £50

There are concessions for lots of things and most places do Free Carer and you can get Carer Concession Card for the cinema.

Their mileage should come in their pay, added onto their time sheet from the DP account, I'm confused as to why it doesn't

Are you in an area where there's lots of free things? Parks? Beach? Or no?

You absolutely are not being CF

People don't realise how expensive being disabled is.

I'm in my 30s and don't think I will ever be able to have a holiday again because I can't afford to pay my own travel costs, someone else's travel costs, and then their hourly wage. I can't get funding either it's all been cut

We have the same issue, it's so expensive! For the cinema, do you have a CEA card? They are very useful if you qualify. You pay for the child and an adult goes free.

Have you asked? I just had a quick look at a nearby bowling alleys website and they do 50% concession for people with disabilities and their carers (and YANBU)

I'm surprised there aren't concessions. I've seen local attractions (and lots in London) which offer adult carers free entrance so assumed it was standard.

As far as I can work out you should be able to get concessions at the two main bowling alley chains. Are your PAs even asking for a Carer Ticket or just automatically paying full?

As for food, if they are taking him out for a meal then yes it is obligatory to pay their food I often felt frustrated that my PAs might "take the piss" by ordering more expensive food than I had and I felt I couldn't refuse

However, if they are taking him to the cinema and he wants snacks, you are so not obligated to pay for someone else to snack, same if he wants something from the vending machine or a shop.

If they are spending lots of your money on cinema snacks and such that they don't actually require then they are royally taking the piss and I would look for new people

My dons direct payments cover mileage and originally also covered the activity costs as well. This was then cut and we now pay activity cost for any activity that isn’t a special needs activity (and pre approved) . For example a weekly special needs drama class and a special needs trampolining session are covered but bowling and cinema are no longer covered. Usually the carer goes free for activities so we pay the cost of my son’s entry/ticket. It can get expensive though. Could you discuss with your son’s social worker to see if his budget can be tweaked to include some activities?

Do you have a Max card? That gets a good discount in a fair few activities.

I know what you mean though. DS2 goes out every other week with a carer, then once a week in holidays to respite. Costs me a small fortune, mostly his DLA.

Re: the food. Can they not eat at home before going out? Or do you mean snacks? I refuse to buy those at the cinema for my son or we take our own with us.

Thanks for the replies.

DS can’t do the cinema due to sensory issues. He can’t eat outside the home so, beyond a drink, that’s not expensive. I checked with DP about the cost of travel and they’ve said they do not cover travel costs and it’s my responsibility to pay. It cost me £38 for DS and carer to drive to the bowling venue. £24 for two games (they do 4 games so £48) so it’s £76 for bowling. It’s more for mini gold as it’s further away 😐.

Our DP can’t be used for respite or holiday accompanying PA. last April, I returned a hefty amount to them because we can’t actually use it. Obviously, they wanted it returned rather than sitting in my DP account.

I did phone the mini golf venue who said that it’s at their discretion and I got £2 off each player per game. Better than nothing but doesn’t really help.

DS joined a gym in the summer. He’s enjoying a very basic programme but, the attendants there said they couldn’t go round with each time with him; DS needs prompting all the way. I asked DPs if I could pay a trainer once a week but again, it was a “no”.

Speaking of holidays, DH and I haven’t had a holiday in 3 years and that was a long weekend in York.

Would he like National Trust, a child membershipf or a year is £10 and a companion is free. Once 10 its about £35 a year, still free for a companion.

AuntyFlo not really. We are NT Members but he doesn’t want to do that kind of think at 17. Also, his sensory issues prevent him walking in gardens (grass/gravel/earth) so no.

I’ve just contacted Ten Pin Bowling (they have outlets uk wide). The lady I spoke to said that yes, they do offer concessions for disabled people but you cannot use them at the weekend (it’s Mon-Friday only). So, basically, they prefer able bodied folk, at the weekends 😐

£38 for driving to bowling is very expensive. How far is it?

Our LA doesn't pay for mileage. The DP covers living wage, NI, tax, pension, employers insurance. They expect PIP/ DLA/ attendance allowance to pay travel costs.

£38 to drive to bowling and back??? omg, that's extortionate!

It’s 26 miles away. And the Pa’s both use their own car otherwise I’d have to drop him/pick up, which totally defeats the object.

S0 52 miles @45p a mile which is the HMRC rate- above that it has t be taxed as a benefit? What is the extra above 45p for?

Would a cab be cheaper?

In these circumstances if someone is in receipt of Mobility element of PiP, that's excluded from LA charging policy calculations so effectively LA is already funding travel allowance (high mobility element is £59 per week).

He is free to choose to go bowling midweek. The bowling rink isn't saying he can't bowl at weekends, just that there's no discounted rates for anyone at peak times.

Your PAs appear to have set their mileage rate too high. 52 mile round trip costs £38??? That's 73p per mile nearly double what most LA mileage rates are. It ought be nearer £24 (approx 46p /mile depending on car engine size). That's a long round trip to your nearest bowling alley so I'm not surprised it's pricey.

Sorry in my first paragraph, to claeudy I, meant effectively LA is ensuring he has a level of funding for travel costs by disregarding any mobility PiP element. Which is level that DWP say is set nationally for his level of mobility needs.

Cannot do in the week now College has begun. Will not leave the house after dark (meltdowns) I’d love it if he’d do Sunday’s 7.30 half price slot but his routine WILL NOT accommodate it. He has asd and additional co- morbid OCD diagnosis.

Just thinking about it, my son has a personal budget rather than direct payments. I think one of the differences is that it can be used for costs other than PA. could you ask for a review with the social worker? Does he have an EHCP? I think personal budget should be discussed as part of the EHCP process.

Yes, EHCP. Pip and high rate mobility. However, 2/3 trips per week very quickly runs through that. We’re new to PIP. Had no idea we’d qualify so that’s been a huge help.

Did you get a car with the high rate mobility? If you did then you can add the PA’s to the insurance and the mobility car should be used for days out, that would then remove the travel costs (you would just make sure the car has enough petrol in).

CF?