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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

to just want some help from social services

63 replies

Geneticsbunny · 14/07/2021 13:44

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?

OP posts:
Dontwatchfootball · 14/07/2021 21:45

I am so sorry you are in this situation. Years of starving these services of funding, so they were on their knees anyway, then going into a pandemic. I think there should be a Panorama about this or something, it is just shocking.

JenniferAllisonPhillipaSue · 14/07/2021 21:59

I've got DP for our son, but there are no holiday clubs for him to attend in the local area. A club he attends on a Saturday afternoon, closes during the school holidays.

We are one of the invisible groups of society about whom nothing is ever reported. You're not the only one struggling Flowers

GingerAndTheBiscuits · 14/07/2021 22:02

Have you complained to the Council OP? Once you’ve completed the procedure you can go to the Ombudsman. The guidance is pretty clear that councils need to be considering creative approaches to meeting needs despite Covid

Nsky · 14/07/2021 22:14

I’m sorry you are having such a crap time, the government needs to be taken to court for this, sheer negligence

Original poster
Geneticsbunny · 15/07/2021 08:24

@Hankunamatata he got one to one support at a mainstream holiday club which we paid for and the council paid for the one to one. In mainstream he had one to one support all the time. He has a physical disability which makes it hard to use his hands so can't write yet (he is 11) but was at the lower end of juniors in terms of understanding and work. Quite young in terms of social skills but very friendly so got on fine.

OP posts:
Original poster
Geneticsbunny · 15/07/2021 08:25

@GingerAndTheBiscuits the council are happy to fund something, there just isn't any provision available...

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GingerAndTheBiscuits · 15/07/2021 08:27

Could they not look at funding an alternative? Are there literally no carers available to take him out in place of his usual respite? Or is it that the council won’t fund the level of direct payment necessary to pay someone to do so?

Original poster
Geneticsbunny · 15/07/2021 09:40

@GingerAndTheBiscuits
They will happily throw some direct payments money at us to employ a PA but he would need 2 adults to take him out anyway and he is so distressed that he darts off very fast and will put all kinds of random things in his mouth so I don't think him being out and about with people who don't know him would be safe, or something that he would enjoy. Also finding a pa (personal assistant) to employ is a nightmare.

OP posts:
Original poster
Geneticsbunny · 15/07/2021 09:42

@Hankunamatata he has a special school place from September but that is mostly because he is moving to secondary not because he has got so much worse

OP posts:
Hankunamatata · 15/07/2021 11:12

Could you contact the special school to see if they are running any form of summer scheme? Our nearest sld school runs 2:1 care.

Also would it be worth chatting to his specialist or gp etc. Entering teens years medication can be helpful esp around anxiety related stims. My nephew with sld started a adhd and anxiety medication regime around first year of secondary school as puberty triggered a worsening in his sen

GingerAndTheBiscuits · 15/07/2021 11:35

Could he access a “normal” holiday club with support from a PA?

regularbutnamechangedd · 15/07/2021 12:17

@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
It is a right. Enshrined in disability law.
MargotEmin · 15/07/2021 12:24

Why are people assuming respite is only delivered by foster carers? There are some brilliant residential settings with skilled, professional, PAID staff

x2boys · 15/07/2021 12:28

@MargotEmin

Why are people assuming respite is only delivered by foster carers? There are some brilliant residential settings with skilled, professional, PAID staff
In theory, accessing this however is a different matter entirely, and the hoops you have to jump through
regularbutnamechangedd · 15/07/2021 12:30

I'm currently awaiting info I've requested under the freedom of information act with my local authority's reasons for refusing to assess my disabled child for social care. All I know is that we were refused, for the second time, but I wasn't given a reason why. (I know why, they don't want to give us any money) I have a copy of my local authority's criteria for assessing and we meet it on three counts, so I'm v much looking forward to seeing what their carefully hidden reasons were - so that I can appeal them with a LOT of supporting evidence.

You can make a formal complaint against your disability social services, and if you need to escalate further you can complain to the local government ombudsman. That's the route we will have to take, by the looks of things.

There are no summer clubs for my DC, as he is under the age of 8, but we are hoping for direct payments so that we can hire a PA for a few hours a week, which would mean I could take him and his sister out to the playground, or the beach. I can't take them currently as due to my youngest's age and DC's needs I would have to split myself in half to keep them both safe.

And so I look forward to another summer trapped in our house/garden as it's the only place I can guarantee we are all safe. Thank goodness we have the garden. My heart goes out to SEN families stuck in high rises for six weeks.

Original poster
Geneticsbunny · 15/07/2021 15:51

@GingerAndTheBiscuits. This is what we had previously but his abilities have got so much worse that he wouldn't be ble to join in with anything in a mainstream club

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GingerAndTheBiscuits · 15/07/2021 15:58

Goodness this must be so hard for you. Is there anything at all on the council’s local offer that might fit the bill, even with some reasonable adjustments?

SomethingNastyInTheBallPool · 15/07/2021 16:03

Huge sympathy, OP. We’re in a similar situation but are lucky to have found a SEND holiday club with space. As you’re entitled to direct payments, it might be worth getting in touch with your local special schools and finding out whether any of their staff would be interested in supporting your son in the holidays. In our area, a lot of the holiday club staff are from special schools.

Also, you should ask for a carer’s needs assessment from your local authority. They’re legally required to take into account the effect caring for a disabled child has on you and your family life.

Original poster
Geneticsbunny · 18/07/2021 11:52

Is anyone around who works in social care and can help me with what to try next? I am currently wondering whether injuring myself would allow us to get some more support? Obviously I don't want to do that but I seem to have exhausted all other options.

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GingerAndTheBiscuits · 18/07/2021 23:59

Only just seen your post OP. I hope you know injuring yourself is absolutely not the way to go. For one, unplanned provision is likely to have an even more negative affect on your DC. For two, it’ll bring ten tonnes of scrutiny down on your head from social care but probably none of the support.

I know you said before that using a direct payment wasn’t an option but could you revisit that? Suggestion above to contact local special schools to find out if any staff work as PAs through the holidays is a good one (though clock is ticking on end of term). Would having some help (perhaps to stay at home with your DS while you take time away, so removing the risk of him running off) be some small improvement on where you currently find yourself? Is there a friend or family member who might consider being a PA for a few weeks through the summer?

Hm2020 · 19/07/2021 00:28

I have no experience but this is just awful and should be major news my heart goes out to family’s going through this and it absolutely is everyone’s problem please don’t injure yourself op. There’s seems to be posters with knowledge that could help on this thread I hope you get what your family needs Flowers

Original poster
Geneticsbunny · 19/07/2021 22:41

@GingerAndTheBiscuits. Thank you. I was having a really bad time yesterday but am more rational today. I have put a bit of a coping plan together and have been in contact with social care. I think we have been assigned a social worker but I haven't been able to contact her yet. I think we will be ok for the next week. It just feels like we are hammering our fists against a wall and noone is listening.

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Original poster
Geneticsbunny · 19/07/2021 22:42

@Hm2020. Thank you. Knowing that someone somewhere cares does help.

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NotAnotherPushyMum · 19/07/2021 22:47

I feel so desperately sorry for families like yours who are crying out for support but just can’t access it. I know in our local authority it isn’t funding that is the issue, it’s that there are no actual staff. The money is there to pay people, they just can’t find anyone.

Pogacar · 19/07/2021 22:51

This is scandalous. I really feel for you OP.

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