to think parent carers of severely disabled children should not be treated like employees by social services?

[OwlLady]

as if I have time to respond to letters in 7 day time periods
as if I have to organise my own meetings else services will be withdrawn
as if I have to fill in their own paperwork for them
as if I want to be patronised and read emails littered with inconsistencies, spelling and grammar mistakes
as if I have time to attend meeting 20 odd miles away during half term
as if I would even be in touch with them in the first place if I didn't need their help and support

[BelleDameSousMistletoe]

[DameEnidsOrange]

It's crap isn't it - it's why DS no longer has Direct Payments for respite

[freetoanyhome]

employees at least get paid

[OwlLady]

I honestly feel like saying for the measly amount of support we get to forget it as it's more bloody hassle than it's worth. I have had to give up my job and my health is suffering, my anxiety is through the roof and I am treated like a minion and we are still not in receipt in receipt of care agreed in May but that's because I am being obstructive apparently because I did not agree to the respite home suggested and requested another. My child is not an animal. Infact I don't think I would even leave my dog in a kennels I didn't approve so why would I leave my extremely vulnerable child somewhere I felt uncomfortable with? :(

but it's all my fault, it's nobody elses incompetence, it's mine for not replying within the given timescales

[JuliaScurr]

DameEnid that's terrible
I use some of the dp money to pay for admin - could that help?

[MissWinklyParadiso]

YABU - most employees get paid holidays and sick leave amongst other rights :(

Sorry to hear you're having such a hard time (sneaks in a hug while nobody is watching)

[OwlLady]

I look at how much support and activities children in foster care get and I wonder if my child would be better off in care because they would get more leisure activities. I would be well and my other children could go out and do as they pleased

am I being selfish keeping her at home, would it better for all of us if she was in care? The only thing that stops me is I would miss her too much :( but I feel so anxious and ill all the time I am barely functioning

[OwlLady]

I have outsourced my admin work to dh and now I feel calmer :)

thank you for letting me be self indulgent but they do cause me more stress than they solve

[marjproops]

Totally with you OP. Ive been sent a few forms to fill and theyre always the same question in various permutations, I dont have the time, shtrength or energy to fill them in...and why do they always come at the same time?

Im only on MN now cos DCs having a lie down as she gets exhausted with her disabilities so this is my 'me'time and i do not want to have to spend it continually working.

[marjproops]

And dont you wish job centres/social services etc etc would appreciate that we work a 168 hour week????? no holidays, perks are the love from and for our children,and for a LP like me, no breaks at all (not complaining about that I love being with DC but it would be nice to get just 5 mins to myself), yet.....

[GrimAndHumourless]

It's just SHIT

[elliejjtiny]

YANBU. This is why we don't have a social worker anymore. Because I was fed up with being grateful for any help that came our way, even though it wasn't the kind of help we needed. Because I was fed up of being treated like an idiot.

[SoleSource]

You are a Carer an invisible, lowly nothing. You are not resoected and invisible, forgoten about until you snap. Then you're a weak woman who xannot cope.

Welcome to my life.

[marjproops]

and elliejjtiny and SoleSource?

absolutly 100% agree with you both too.

[Glitterknickaz]

You're a scrounging bastard.
You should look after your kid just like the rest of us.

You are the scum ruining society, why this country's economy is down the toilet. It's down to you and your defective spawn.

(most of the above has been said of me too - cos it's so cushy being a parent carer isn't it?)

We've been bounced back by the Child Disability Team four times by the way. We've been deemed to be 'coping'. hollow laugh

[marjproops]

Op, you should take this thread over to the special needs forum too if you havent done so already.

It just makes me relieved Im not the only one going thru this too. But it shouldnt be happening to us in the 1st place.

[t0lk13n]

I have never had respite care for my son and he is 27...gave up in end as we could 'manage' and were a low priority.

[marjproops]

tolk13n, know what you mean, mines 12 and will need lifelong care and im the only 1 in the entire world for her , no other family or outside help,so if anything happens to me...

and ive had to give up on a couple of services cos they were making me more stressed and id rather struggle financially cos i need my health and sanity for DC.

Ive already suffered a stroke in the last 3 years with the stress...not of DC, shes hard work, but cos of all these bloody services draining me.

im in my 40's btw.

were also a low priority- meaning were nothing eh?

[Ilovecake1]

I am really sorry OP that your having such a hard time...so unfair! Why do they seem to work against us, not with us...our life is tough enough as it is. Please try and stay positive and keep us updated with how you get on!

[Ilovecake1]

We are the same here..never had any help because we are not a family in crisis!

[threesocksmorgan]

sorry to hear you are having such a shit time, makes me glad I don't get direct payments.
I would love to know why SS seem to always want to have a meeting to discuss respite, when she is at respite....... never makes sense.

[OwlLady]

My daughter is 13 too :( and my services are being reduced even though she is deteriorating physically and behaviour wise and compared to her peers there is a vast difference but because apparently the social worker witnessed her painting (wtf) she is an able child working at p4 level, at 13!!!!!!! and this shows an improvement I mean, my god. We literally do not leave the house all summer as it's too dangerous and I think that's the cause of my anxiety now months later as I just cannot cope with it, but it is dealing with the SW and SS which is the worst part of all it, it's actually worse than the caring itself. How do you all cope without the care though, even that minimal care? I don't have any family close at all and even the family we do have cannot cope either with her infact most of the respite carers haven't been able to cope with her and they are supposed to be the professionals

god marj, having a stroke :( you poor thing, how are you now?

[ZebraOwl]

YANBU - at all, not even the very tiniest wee smidgen of a bit.

Doing all the hoop-jumping for disability!stuff for myself is Grim. Watching My Naughty Little Sister having to fight every step of the way to get the support My Beautiful Niecelet needs due to being very severely disabled by something so rare there is no accurate prognosis & the average life expectancy is 2y makes me have The Rage. Full-on stompy rage. I have on more than one occasion got off the phone with MNLS & danced with sheer fury at the rubbish she's having to put up with on top of all the practical stuff like juggling hospital appointments & doing physio with MBN (& those little things like running the house & looking after her stepdaughter & assorted other small people) - to say nothing of the incredible emotional toll it all takes

There are some really quite special Logic Gaps when it comes to disability support. Benefits reform means I got summoned to an ATOS medical (& with my GP being on sick-leave & there being no time to get an appointment with another doctor & get them to request a home visit). Having arranged for my father to come with me (I can't manage my "lightweight" wheelchair myself very well at best of times) & had to travel by taxi as getting to the centre by public transport in the wheelchair in the rush hour is not possible unless/until I get it kitted out as a pseudo-tank (am tempted) we ended up stuck in traffic, so I rang the centre to tell them. It turned out that wheelchairs are banned from that ATOS assessment centre. Totally banned. They'd said to let them know if you'd not be able to do 42 stairs In An Emergency (if I couldn't bumshuffle it I am small enough the parental unit could carry me), no mention of wheelchairs being banned. The suggestion was that I leave my wheelchair in the building reception & my father "help" me to walk. I declined their kind offer & was told to arrange a home visit. Which I did, but with the added stress of a demand I go to another, more distant, medical centre for assessment & then a palaver over the cancellation of that visit. Still not heard anything about a date for my home visit but am not terribly inclined to chase them up about it tbh. Not least because I've about half a dozen hospital departments I need to be contacting to see if perhaps people might like to, er, do their bloody jobs. That kind of farce is bad enough when you're an adult who's only to look after themselves & the kittens - when it's a disabled child [or adult so profoundly disabled as to require the same level of support as (they did as) a child] & their carer it is Oh. So. Much. Worse.


Glitterknickaz
People can be so very delightful, no? My sister has been told that any pregnancy that would lead to the birth of a disabled child should be terminated & assorted shite about the relative "worth" of disabled people. I still think longingly of hunting down the people who come out with this stuff. Rawrgh.


OwlLady
Some of the cretinous people my sister deals with have some truly fascinating things about my niece in their files. She can do all SORTS of things, my niece, according to The Files. Pity it's mostly arrant nonsense made up by God alone knows who. Then of course there's the splendid thing about there being no mobility-related help available for children until they're three because it is totally normal for children under 3 not to walk. Or crawl. Or bum-shuffle. Or sit unsupported. I know there are children without disabilities who aren't walking before 3, but I'm fairly confident services could distinguish between them & those children whose disabilities are responsible for their inability to walk. Obviously things are very stretched & there have to be cut-off points etc, but it so often seems that you have to fight to the death for every single thing & they will make absolutely ridiculous leaps of judgement based on the tiniest thing. Really hope that you are able to get suitable provision put into place for your DD soon.

[Glitterknickaz]

Oh yeah. We're 'worth' fuck all and so are our kids.
We don't contribute to society, apparently.

[MrsTerryPratchett]

So sorry you are having a rotten time. I worked for SS and there are two things I wanted to say. One, that for every SW that thinks you are a PITA, there's another who is glad you are fighting because then they can fight for money, for services. We are tied by people above us who are rationing services. We want to fight but if you give up, because the system is shit, we give up. Two, in the SS dept. I worked in, there were SWs with disabilities, SWs with caring responsibilities, SWs with children who have LDs and PDs. Some SWs understand.

Please know that good workers understand that carers are the ONLY reason the system can limp onward. If you didn't exist, there would be no way people with needs and disabilities would be cared for. There isn't the time, love, care, expertise.