to just want some help from social services

[Geneticsbunny]

I have a disabled son who, before covid, was in a mainstream school, was very sociable and was generally a happy chilled out boy who needed a bit of help with some things. Over the last year we have had all of our social care taken away because of covid restrictions. My DS has struggled so much with the changes that he is now unable to talk, incontinent, struggles to eat and has developed loads of repetitive behaviours. I have just found out that although we have been approved to have respite funded for this summer, there are no places available... I honestly don't know what we can do. He is far too disabled now to access a normal holiday club and requires 2 adults to be able to safely leave the house. We can't be the only people struggling with this? Why is noone reporting this and why is nothing being done?

So sorry for you. I am in the same situation with my adult disabled son who has had his social care removed due to covid. Wish I could help, but I understand.

Could you ask about Direct Payments, if there is funding but no placement could they not offer the equivalent funding and you could get at least some help for a break?

You are very sadly not alone. The pandemic has escalated the need for children's services whilst the tories are shutting children's centres and early help provisions, budgets are non existent it feels to me as a social worker.

Children's disability staffing levels are very low in my area also.

I know it's crap I have a, non verbal severely autistic son he's eleven, we are lucky that his special needs holiday club has re opened fully, so he now gets one day a week in the summer holidays, he has not be able to access this throughout covid though

I just wanted to say I'm so sorry for what you and your son have been through and are going through now.

Just bumping this for you in case anyone has any ideas

You do know respite foster carers generally do the job at a loss, don’t you. You are saying it’s u fair that two adults are not prepared to volunteer their home and their free time to look after your son. Respite care is great when it’s available, but it’s not a right

@0None0

You do know respite foster carers generally do the job at a loss, don’t you. You are saying it’s u fair that two adults are not prepared to volunteer their home and their free time to look after your son. Respite care is great when it’s available, but it’s not a right

People volunteer for this role and most are paid, please don't make this lady feel any worse than she does already

Most are given expenses, which don’t cover the actual costs I’m not trying to make her feel worse, just a reality check. There is no automatic right to respite, and the supply of places depends entirely on volunteers, so I’m not sure who she thinks lack of volunteers can be reported to or what anyione can demand is done about it

That level of regression sounds quite extreme. Does it need to be checked our medically?

@0None0

You do know respite foster carers generally do the job at a loss, don’t you. You are saying it’s u fair that two adults are not prepared to volunteer their home and their free time to look after your son. Respite care is great when it’s available, but it’s not a right

No, we do it because we love doing it, the money doesn't come in to it but there simply are not enough of us to go round.

The fact that respite care for families such as OP's depends on volunteers, is unfair. Something so necessary should be funded properly, we don't have a school system that depends on volunteers, or a banking system that is run by volunteers.

@0None0

Most are given expenses, which don’t cover the actual costs I’m not trying to make her feel worse, just a reality check. There is no automatic right to respite, and the supply of places depends entirely on volunteers, so I’m not sure who she thinks lack of volunteers can be reported to or what anyione can demand is done about it

I imagine she means that it's not being reported in the media. Because it's not. It's OK for someone who has been through so much and who is clearly at the end of her tether to vent about the lack of spaces. Maybe it's something that should be funded better so that we're not relying on volunteers. Maybe that would happen if anyone actually knew the situation, perhaps through it being reported on in the media. Either way, there's no need to make someone who is clearly struggling feel worse about herself.

@FrownedUpon

That level of regression sounds quite extreme. Does it need to be checked our medically?

I agree. Going from a mainstream school and needing just a bit of help to - in just over a year - incontinent, mute, troubling behaviour is extreme.

The reason for this is that football and the like are far more important in the government's eyes!!

Who the fuck voted YABU???

Provision for families with disabled children is woefully inadequate, especially under this government.

@queenMab99

The fact that respite care for families such as OP's depends on volunteers, is unfair. Something so necessary should be funded properly, we don't have a school system that depends on volunteers, or a banking system that is run by volunteers.

Either way, you are still dependent on families prepared to share their home and give up their spare time.

The very nature of respite means you are dependent on goodwill and volunteers. Paying more money won’t change that. There are people who have the time and space and dedication to do this, but not enough of them to go round

@FrownedUpon we have been referred to CAMHS and are waiting to be seen. Yes it is pretty severe! Still sinking in tbh.

@0None0 I completely agree. Foster carers are criminally underpaid. We were after two days a week (5 hours per day) at a holiday club for disabled children so not much really. Given how high is needs are and that officially we both work full time and have two other children I don't think that is too much to ask. I would happy pay for a private holiday club but they don't seem to exist for disabled children. I also have clinical depression because of the withdrawal of our support this year and I don't think I will manage another summer without any support.

@WutheringTights yes I meant in the media. If feels like everyone has completely forgotten families like ours.

Thanks for posting everyone. I really need to vent and get how completely awful this whole thing is out of my system. Hopefully then I can get my head down, blinkers on and just carry on.

Has his provision be changed from mainstream to special school? Sounds extreme regression.

It sounds really really tough. It’s not being reported as I haven’t read/heard anything like this and hadn’t thought about it before.

I am so sorry - and quite annoyed about insensitive comments on this thread. Space to vent is the minimum you need! Im a stranger on the internet but I really wish you and your family so much more than that and hope you get the help that you very really need and wish you the very best

I'm a bit amazed that you had any social care support tbh if he was in mainstream and only needed some support in school. To qualify here you child has to be in specialist school provision as they are so over stretched

I am sorry things are so difficult. I have a disabled son myself and totally agree that so many services were withdrawn during the pandemic and are very slow to return. I am sorry you have had to read some insensitive posts. I really do not know why people do this, guess it makes them feel important.