What would you ask the government to do for carers?

[heartinthecountry]

Hi - on Wednesday I am going to a government consultation focus group/workshop on carers. Basically a chance for carers to let the government know what we would like from them. Would be really really helpful if anyone has any thoughts so that I can make sure I am not only giving my own perspective but that of parents of children with SN in general.

I imagine we will be discussing things like respite, direct payments, the right to work etc etc.

Any thoughts really welcome.

Social Services depts that refuse routinely to accept children with a dx of say, AS or ADHD because its not severe enough without looking at the way the child rpesents (have been caught in this trap and soemone else on here last week was as well).

Facillities for siblings- where are they? Can't find anything for poor DS2 but he's having a ahrd time atm, e-mailed young carers project but no reply.

Before SS depts could claim thre is no demand for scemes such as an after school SN club could theya sk pease? Everyone ehre wants one, but whenever anyone asks we're told no demand. Which stops anyone working.

Most of all- some epathy instead of being treated by the government like we're professional grabbers. if we ask for DP's, we need them- OK assess, but acknowledge that we didn't choose this bloody life, why on earth would anyone! returning calls, politeness, and air of belief.... is ti really so much to ask?

(sorry HintheC )

Not at all Peachy - this is exactly the sort of thing that is useful because I may not think of it all.

I think I would say to make care a legal entitlement in the same way as education. Yes, the statementing system is fundamentally broken and LEAs routinely flout the law and have to be dragged to tribunal. But at least the law is fairly clear and they can be challenged though the system is loaded in their favour.

Social Services are effectively above the law in terms of what they deign to provide and their criteria for whom they provide it to. The law is obscure and you can't (as a carer) get legal aid to challenge in court. You have to go to the Court of Appeal at your own cost, and no carer can afford that.

So, although (for instance) Direct Payments legally must be offered first, many SS departments don't do this and though you can quote the law at them till you are blue in the face they can just tell you there is "no budget" and ignore you. Until there is a mechanism for holding them to their legal responsibilities, any moves to improve the lot of carers are just hot air as what is supposed to be provided will not reach them.

Make it a clear law as to what respite you may have. And decent Carers Allowance. Even if care was only 35 hours a week thats way less than the minimum wage. As it is we care 24/7 at something like 17p an hour. Hardly makes up for our loss of jobs.

Would everyone say respite was probably the main thing they want?

Or more carers allowance?

Or proper childcare provision so they could go back to work if they wanted?

(I know we are talking pie in the sky here )

Needmorecoffee, I saw an advert the other day for foster carers for children with special needs. They were offering over £400 quid a week! So I could get 10 times more for looking after someones else's child than I do for looking after my own, plus they offer full support/respite etc. Beyond belief really when you consider that a lot of the time the parents of those children would probably have been able to cope if they'd been given more help in the first place!

More support for my other child. He misses out on so much because of DS2.
Either support groups for siblings (so he can see other kids in the same situation), or activities that NT and SN kids can do together.

Decent CA - I have given up a bloody good job to care for DS2, and can't see me ever being able to go back to it due to his condition.

Social services and NHS staff to realise the impact a SN child has on family life and the services they may require because of this. (they have no bloody idea, which makes it extremely difficult to get want you need!) - More training??

entitlement to carers' allowance based on hours worked per week, not on income, and then graded according to income in some way. Or maybe not even that - after all, carers who work still have to fork out much more for childcare.

I regularly earn more than 80 pounds per week simply because I get paid well for what I do - but I still work only a small handful of hours per week and on a freelance basis from home because I have a child with SN. If I wasn't a carer I would be able to have a 'proper' career and work much more.
I really don't think earning more than 80 quid is the sign of having a good job.

I think I'd rather have decent CA than childcare - with hospital appointments, school appointments, illnesses etc. etc. I don't think I could hold down a real job.

I'm rather peed off as I've lost my CA. Why? Because I have started a PhD (so am classed as in full time education). I'm doing the PhD because it's flexible so I can still care for ds1- and I do as much caring as I ever have- hands on.

Like geekgirl decent CA would have made life a lot easier. I need this PhD because I needed an income. I couldn't find anything else I could physically do because of childcare problems.

The place we hope ds1 will end up in as a young adult when it's time for him to leave home cost £300 a DAY. I'd be happy to accept half (joke, but seriously - look at the difference.....)

Decent CA would have really eased the burden.

I would like some sort of regulation about housing, I have been told I have no chance of a council house so am looking to rent privately and will claim housing benefit(am a single mum too). I guess this isn't specific only to carers but I am very stressed at the moment because every landlord I contact is unwilling to accept someone who is on housing benefit. I will not be able to work for a long time so find this so unfair, perhaps some sort of extra support finding somewhere, I don't know what the solution is really but feel it is something which should change. Hope that makes sense am tired!

I think it was also be good if CA didn't stop when you get to pension age. Surely if you still have your SN offspring living with you by the time you reach that age you need more help, not less!

Message withdrawn

That's right. I do some work from home but if I can't do it when ds is at school I have to sit up half the night to finish it. It doesn't mean I'm caring for him less hours.

exactly- guess who is working now (because she had to leave work at 3pm to meet the school bus- my NT kiddies have access to childcare)

Actually, what would be handy is some understanding that current sex discrimination legislation is null and void once you have a disabled child. You have the right to return to work - unless your child is disabled. You have the right to childcare - unless your child is disabled. You have the right to equal pay - unless your child is disabled. All the measures put in to protect women's rights after having children only work if that child is NT.

If you have an NT child, your job is protected until you put your child into childcare and that childcare is available (OK at a price) and fits in around your hours. If your child is sufficiently disabled, there is no care at all available till age 2 or 3 (sorry love, job gone) and then only part time (sorry love, job not available) and when it is full time there is no after-school care (sorry love, job needs a bit more commitment) This board is awash with frighteningly bright women whose brains are quietly dripping out of their ears because their erstwhile "careers" aren't compatible with meeting the school taxi at 3:30 or ad-hoc hospital appointments.

Yurt- the CA thing is the same as we had last year, I attend Uni 3 hours a week. 3 blardy hours- but because they assume I do more (like when exactly? Goodness, if I had that thing called time I'd be flying out that door with a first and no worries) I never qualified. So I get to do all the childcare / etc, but apparently am not actually doing it. or something like that.

Pixel- your point about the £400 a week- when i worked at HomeStart they commissioined some research that suggested HomeStart cost £8 for each £80 that SS cost to do the same thing (£80 or £800 anyway, cant quite remember)- so what did they do? remove funding from our hometart and give it to the mroe expensive SS to offer the smae services. Bloody insanity! Surely a service that can keep famillies together as we did makes far mroe sense? (we had lots of famillies with disabled kids on our books, as well as the usual mix of PND etc).

R3dH3d, i used to help a family (this was when I was 16- aeons ago) where the dad was a research scientist, his wife died in labour and the child got CP after a vaccination accident (as it was termed). he moved hundreds of miles to be close to where he felt was the best source of help for her, and received absolutely nil in the way of resite / childcare etc so ended up living in a run down little flat that nobody else wanted. It was awful for him (daughter was extremly severely brain damaged- no evidence of any awareness as well as the Quad CP). They didn't get any compensation until she was 21, so had to subsist- where were SS then? If hrey ahd put in some childcare his life would have improved immensely.

I suppose my greatest needs are practical, emotional and financial. There are many carers of sn children (those where diagnosis is uncertain, complicated, or delayed) who get no support from any system and live away from family.
Our needs are dependent on our dcs needs, so careres should be treated as individuals and treated respectfully!.
There should be some system - perhaps a special needs/ disability coordinator who could give out information, and refer to services as required. This should be available even without or before diagnosis!
Personally I would like to have heard of dla and ca years ago, and had incontinance support before the age of 8!
Carers need to stay safe, well and sane so I would like access to courses on avoiding injury (safe restraint and lifting, back protection etc) and behaviour management tailored for sn and access to affordable specialised councelling. Respite care to attend to carers medical needs would be nice! Next suitable sn holiday and afterschool care.

thanks everyone - this is really helpful. I'm going to make notes and try and get in as much of it as possible.

I echo Magso, access to safe lifting advice is essential, because when you do your back in there is noone to care for DC. Access to counselling also, because its hard to come to terms with all this. A six week counselling course would have been cheaper than years of antidepressants. Its all false economy for the government. The foster care thng is abosolutely right. We used to foster two children with SN, who were mainly in care because their parents couldn't cope. If theyd had more support at home one of those kids would have never needed to be in care. Cost of a cleaner a week, maybe £20. Respit care £40. Compared to foster care £300. Hmmmm.