LA out of touch re short breaks?

[Bippitybobbity]

Lone parent of 2 DC with complex needs, within school they have 3 adults employed between them solely for their needs and there is just one of me out of school time. We can't access anything mainstream provision wise as I can't keep them safe outwith a very secure building or a trained second adult, that's fine.

Both children are FSM children.

Our shortbread offer for Easter is a series of sessions 2.5 hours long for £25 per child. Over Christmas they offered a subsidised rate and some free places for FSM children and it meant we actually actually to do something. Nothing on offer for Easter to allow FSM children to attend.

Spoke to the LA and got a "it is just £25". Which equates to £50.

One of the DC is a blue badge holder and their DLA now has to fully cover the cost of the car. The other DC is incontinent and his nappies are £10 for 10 which lasts 2 days. There goes a huge proportion of his DLA. They both have lots of other costs that add up.

Between food cost rises, fuel cost rises, a sharp gas/electric it very clearly isn't just £25.

AIBU to think the LA have completely lost touch with the reality of the situation of many of us?

We can go without accessing nice things during the holidays, they are lovely opportunities for the children but we can live without them, I'm just so sad the DC aren't able to have experiences, even stay and plays.

We can't go to parks etc without a second adult so it's a hugely limited holiday coming up.

You have my sympathies, child care / holiday care provision for disabled children is really poor. Regarding nappies, have you tried contacting your local continence service as you may well get these provided.

@Cabbagepie

You have my sympathies, child care / holiday care provision for disabled children is really poor. Regarding nappies, have you tried contacting your local continence service as you may well get these provided.

We are on an 18 month waiting list for the continence service. Well it was 18 months but the service has just been suspended indefinitely due to staff shortages so now its 18 months+ however long the suspension is.

What a rubbish situation sorry to hear it.
Just a thought and I know this wasn’t the point, but would it work to book one of the children in at a time for one of the sessions and maybe you’d be able to take the other somewhere as you’d be 1:1?

That is terrible about the continence service waiting list.

Which nappies/size do you use for your child, as it sounds very expensive? We don't get quite enough from the continence service so have to do an occasional top-up order ourselves and it doesn't cost anywhere near £1 per nappy.

YANBU. Email your local councillors and let them know - this is the sort of thing they might not be aware of and would want to take the opportunity to address, if not this time then for next time.

The nappy situation is ridiculous ,how old is your child?
In my LEA we got free NhS nappies from the age of five ,they never lasted long enough ,we used to get three months supply at once which always ran out before the next supply was due but at least we got them
What does the local SEND offer say about short breaks?

It's not that the Council are out of touch, it's that their funding has been cut to the bone by years of Tory governments and they have to make very difficult decisions about what they can and can't afford, just like you do.

@x2boys

The nappy situation is ridiculous ,how old is your child? In my LEA we got free NhS nappies from the age of five ,they never lasted long enough ,we used to get three months supply at once which always ran out before the next supply was due but at least we got them What does the local SEND offer say about short breaks?

1. We couldn't even see someone to get a referral to the service until after things opened back up after pandemic. Now we are stuck on a not moving list.

Pull ups/nappies wise the lower cost ones we tried and didn't fit right so it ran down his legs so we had to go up a tier and then there is p+p.

I'm so frustrated.

@littlealligator I do appreciate that but pre ending up with two disabled children I (wrongly) assumed disabled children in the lowest income homes would have been a key priority. We are only low income because I couldn't get childcare to continue my job.

Have a look at www.incontinencechoice.co.uk/adult-nappies/disposable-children-s-nappies.html

Quite a few brands to try and all much cheaper than £1 per nappy. Free delivery if you spend £75 otherwise £3.49.

@litlealligator

It's not that the Council are out of touch, it's that their funding has been cut to the bone by years of Tory governments and they have to make very difficult decisions about what they can and can't afford, just like you do.

THIS.

The LA can’t afford to offer everyone on school meals a free place as budgets are hardly even there to cover schools, never mind holiday childcare.

I’m sorry OP- I don’t know the ins and outs of funding but your life sounds complex and challenging and I hope you have lots of support.

Maybe not but I would have thought children who are on FSM and also in receipt of DLA should be priority

@Plaidparty the irony of your comment is that every single non-disabled FSM child in my LA are being funded 3 x 4 hour sessions each week over Easter entirely free from the HAF fund. They've stopped offering it to disabled children though as at Christmas they provided it to disabled children by funding spots on the short break provision. That's been stopped yet continued for everyone else :(

Have you had a carers assessment? You should be getting respite from the council, either a service or money towards a pa.

My son needs continuous care. Had an assessment in November ...Still don't have a carer. Hes not been in school since September as he is so ill....so I'm trapped at home caring for a severely disabled child 24/7. No breaks at all. He had Hospice at home twice for 6 hours per day since September.
Continence Service will only offer you pads or pull ups that they prescribe. Some areas don't even allow pull ups.
Our boy is too complicated for short break provision without a dedicated 1:1 .....

It's all a shit show !!!

[quote Bippitybobbity]@Plaidparty the irony of your comment is that every single non-disabled FSM child in my LA are being funded 3 x 4 hour sessions each week over Easter entirely free from the HAF fund. They've stopped offering it to disabled children though as at Christmas they provided it to disabled children by funding spots on the short break provision. That's been stopped yet continued for everyone else :([/quote]
Surely that’s discrimination on the grounds of disability, and illegal? I’d be saying as much to the LA.

Our LA offers short break activities but you can't use them if your child needs 1:1. In that case you can have direct payments but I haven't used them for 3 years because DP workers don't work with young people as complex as mine.

Sorry to hear this. It sounds very tough for you. Is there a local disability charity who could advise regarding accessing respite care?

Regarding nappies, I'm sure there must be cheaper options. My children were wearing them until nearly 10 and I used Aldi own brand pull ups with success.

Asda do a night and day pant which are pull ups I think they do an age 8-15
I finally got my son out of nappies last year ,but we also used those over night pajama pants ,when we ran out of nappies .

I thought the HAF programme had rolled out nationwide? It has its limitations but for us as a low income family it has meant my DD has been able to access some activities in the holidays and get a free lunch. I'm sorry to hear things are so difficult for you. I agree 'just' £25 is ridiculous!

[quote Bippitybobbity]@Plaidparty the irony of your comment is that every single non-disabled FSM child in my LA are being funded 3 x 4 hour sessions each week over Easter entirely free from the HAF fund. They've stopped offering it to disabled children though as at Christmas they provided it to disabled children by funding spots on the short break provision. That's been stopped yet continued for everyone else :([/quote]
Sorry this answers my question. That is dreadful.

The level of respite offered is ridiculous,my son get ,s one day a week in a special needs play scheme every school holiday ,don't get me wrong they are brilliant and he also gets transport there and back but i have to pay £10/day and provide lunch obviously I'm very great full for this and the staff are fantastic but this is the sum total of respite I get for a child with severe autism and learning disabilities,newer parents get fuck all