Help with paying for a SN nanny (long!)

[cherryc]

Having a bit of battle with our local council and would appreciate any advice.

My DD is 2 also have DS 6. DD has complex heart problems - has had heart surgery and waiting for open heart surgery which will be in the next 2 months. Also DD doesn't eat anything - she had a nissens (stomach surgery) for reflux and is tube fed. Other problems with controlling her temp and has very low SATS (74%) which means she is blue and breathless.

I work 3 days a week (used to work full time before DD) and DH works full time. We earn enough to put us just at the amount that we don't get any working tax credits or anything but DD gets high rate DLA.

Original childminder used for DS had too many children to properly look after DD. The council inclusion team phoned every childminder in their area and the ones nearby as we live on the border. They were offering to pay for an extra space so DD got more attention but they could not find anyone with room and could do DS school run.

We looked at nurseries and choose one but they messed us around by not doing risk assesments etc.. and said she could not start. In the end we realised she was ill so often and she gets so worn out nursery is not an option.

We could not afford a SN nanny from an agency as £12 ph + agency fees near us. Eventually struck lucky and found a retired nurse who lives near us that is not as expensive but still more than a childminder.

The council will not pay us anything towards these extra costs but they would have paid at least £35 per day for the extra space at a childminder or 1-2-1 at a nursery!!

Had the children with disabilities team round in September to try and get direct payments to help and they turned us down as we meet all the children's needs. I spent ages talking to the SW about money and she put on the assesment 'no financial issues' grrrr. Have been fighting this ever since and they are coming round to do a re-assesment next week but as nothing has changed I don't see how it will get us anywhere.

Basically we cannot afford the nanny and have big credit card debts / overdrafts.

Any ideas welcome.

Thank you

We have found our County Councillor helpful before in SN issues, ie he is voted into his seat so listens and can act as facilitator. Or find out which councillor has SN resposibilities. They basically set the rules, the SServices implement them.

LGoofdLife thanks should have said I have asked our local councillor who emailed off all my blurb to the SN councillor but not heard anything. Also have phoned the head of children's services twice and asked her PA to get a senior manger to call me but they haven't.

Letters? put more pressure?

Well the only thing I can think of is claiming carers allowance ( about £50 a week). I think you can take off most of the cost of childcare from your earnings, ( ie if you are the main carer) so if that leaves you with less than £95 a week it might help a bit. Might be worth getting advise from the disability team if you have one locally ours has a money advisor. I sympathise! It is hard for both parents to work with a disabled child.

OK, we have pretty much the same problem. (Or had, things changed a bit now but will speak as if they were still the same for us as they are for you.) Your main issue is that once you manage to employ someone off your own bat, they think you can obviously afford it and are trying it on. I can't speak for all areas, but locally the only way to get this paid for would be to NOT employ the Nanny, lose your job, have a breakdown and turn up with your child at SS's door. At which point they will put services in place - once it's too late. I think it's illegal. If you weren't pro-active enough to find and employ someone, you'd get this paid for. Because you are, you are penalised. It counts (I think) as means testing a service which is free at the point of delivery. Which is against the law, but you don't get legal aid to challenge it so it's virtually impossible to bring them to book.

Where we have a slight flange/workaround is we got a good and genuinely sympathetic SW (and it's worth repeatedly asking for a new one till you get one who understands) and he put together a request for DPs to cover the time not covered by the Nanny, ie when DH is out of the country eg at the weekends and I'm stuck with 2 kids, one severely disabled. It's not a lot - 8 hours a week - but in practice I just cope at the weekends and spend the DPs to subsidise the Nanny the rest of the time. Once they give it to you, as long as you genuinely spend it on care it's v diff for them to specify which hours that covers. I think in their eyes, that is "care" as I'm in the home but overwhelmed whereas the Nanny is "lifestyle" as I'm able to hold down a job, therefore doing quite a bit better than most of their clients.

How many of their clients would be in that mess if SS had supported them to do what you are doing is a moot point.

I have found that a letter to the local rag usually gets things moving in the right direction. It sounds like a case of discrimination.

We were never very well paid but ended up reducing our hours at work, partly from exhaustion and partly to fit neatly into the tax credit bracket that allows you to claim back 80% of childcare costs. We then employed nannies - there is a start-up cost but then, as you probably know already, you can claim back a percentage of the cost depending on income.

They don't specify how many hours you employ them for, or whether you even employ them when you are at work or home, so we have used them as an alternative to DP's and taken them on holiday with us. It's a loophole but seemingly legal - for now. It just wasn't worth working full-time and we have a better balance now.

Can you argue for an inclusion grant? If your nanny takes your dd to playgroups, community facilities etc., maybe you could argue that she is accessing inclusive activities while you are at work. When my ds was at nursery, we accessed money from a charity to get a 1:1 (useless LA didn't provide one at the time). Is there a charity who would help to subsidise nanny costs to make them on a par with non-disabled child?