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?

Sorry DW is still asleep (fibro) and I'd normally ask her.

I don't understand why it cost so much for that trip. My car is very thirsty (biggish petrol engine with sports whatever it is for joining the motorway) but that kind of trip would cost be about £10 return at a maximum.

The travel costs are decided by the agency. I have no input.

Have been using mobility monies (and topping up myself) for travel costs.

Hippys can you expand a little. How would you do it? Thanks

No I just wanted to know what it meant. She is up now and told me. As far as your post goes you are not a CF.

Your not a CF the angecy is they should not be charging double the government rates for mileage which is 45p.

And yes PIP is a bloody nightmare and the funds for inderpent living have been tightened up so much it cannot be used fpr a lot of stuff that dircetly benifets the end user.

My child loves riding trains but the fund cannot be used to buy him a sesson pass so he can ride the steam engine as much as he wants or pay for travel expesnes. Or at one point for paying for his careers to go with him. (Though they were mistaken about that and had to appeal that ruling)

@TwoBlueFish
Personal budget is used as an old generic term to call his weekly amount, ie how much the direct payments per week are from ASD. Or how much his weekly funding from CCG (NHS) CHC funding, which is called PHB Personal Health Budget (not direct payments). They are slightly different as funded & commisioned by different agencies (ASD v. Health CCG) .

OP will know if her DS is fully CHC funded by PHB (CHC health) rather than ASD. (Or it could be joint funded which makes it little bit more complex but usually SW is first port of call then).

OP is DS's transport to/from college his 5 days a week funded already without significant cost to DS? That's what I would suggest enquiring about, if it's not. It sounds like it's all new, if he's only just claiming Pip. (Is he in the LA or health transition team from child to young adult? They're used to dealing with all those type issues so do ask them!)

Generally speaking transport to college or day services has a stronger argument as an included additional special transport cost within assessed eligible care support needs.

(Since he is now getting Pip mobility to pay for transport to/from social & generic activities via high mobility rate is £59/week- or you could get IMO great value in using it to get motability car so you only pay petrol costs).

They key factor in your OP is you're really being charged far more than others for mileage. If you employ your own PAs, how did that happen? It's definitely above HMRC mileage rate, and presumably they are also being paid hourly on top for time driving & receiving above HMRC mileage rates. So that's a bit . Definitely get some advice from your independent living/direct payment support service on those costs.

Also, am I getting confused because in OP it was mentioned 3 long round trips at week (to bowling?), which seems a lot to fit in an already full college week. Or was that just for school holiday period? As additional support costs (activities and transport) when college is not running, is an argument that can be put forward in itself.
(I get the one long trip and some more local ones during term time, not so much the 3 long round trips each week if he can't go out weekday nor Sunday eves).

The more you unpick, set out & can explain the neccessity of it, and calculate it out clearly & reasonably, the conversation you can have with your ChC nurse or Social worker, whomever funds/assesses level of his payments.

IME social workers & nurses do listen very carefully and explore options with you.

Does any of that help? I can only speak generally about how it might get teased out.

Ah, OP, your updates have only just downloaded. The care agency are charging too much for mileage. And presumably £15+/hour for care time too.

(for the time to drive as well, I meant). That's v difficult. You could talk to your SW and get some advice.

Just as a general view from one of those commissioning services, if you are having to top up from your own money on top of his weekly pip mobility payments for transport, and can show it in black and white (invoices that say transport costs) that is something worth discussing with ASD or health CCG, whomever is funding.

Of course, none of us can talk anything other than generic arguments for/against. It really is something you need to contact your DS's funding authority about. Only they can assess and decide.

Give them the clear documented evidence to assist them.

WhereIsMum. Thanks for all of that info. I will speak to SW (who is also new to us). DS is being assessed for going from child to adult services at the moment.

We used to have travel to/from college but lost that last year in cuts. We used to have a blue badge but had it removed when we changed county. I have collected 2 parking tickets recently so, will bite the bullet and reapply for that. You never know...