My 7 month old DS4 has hypotonia, development delay, ventriculomegaly, mild hearing/sight issues, cleft lip (repaired) and cleft palate. He goes to a sensory session at the SN preschool for 30 mins once a week and I can see how much this is helping him. DH's granddad has been giving me a lift there, looking after ds3 (aged 3) and picking us up. But now he has fallen out with PIL (his DS and DIL) and is now not speaking to us.
I can't drive (severe dyspraxia, haven't actually tried to learn but I struggle to push the buggy in a straight line). Taxi and childcare would cost £70 a week, more than DH's wages for a day. SS won't help, apparently DS4 isn't disabled enough. Is there any funding that I've missed. I've got access to a car, but I can't drive it. I'm wondering if it would be worth DH giving up work. He earns £18k but him not working would save us £40 a week in bus fares plus we could access so many things for the DC (therapy etc) that we can't do at the moment because there are 4DC and I can't drive.
Re. the giving up work, do you get DLA for DS4 - I think you're applying? Do you get DLA for DS1, 2, or 3? Do you get DLA yourself?
For your DH to give up work and not be penalised, he'd have to be claiming carer's allowance. If you were also not claiming, then basically you'd either have to have recognition of your disability, or two of your children disabled enough to qualify for mid rate care, so that you could each claim carer's allowance. Then you'd qualify for Income support. Otherwise, you'd be forced onto Job Seeker's Allowance.
SS say your DS isn't disabled enough - have you officially asked for an assessment? They tell everyone, verbally, that their child isn't disabled enough at first.
Can you rearrange DS 3's free nursery day to that day, so that it's only the taxi fare that it would cost you?
Jeez if your ds4 doesn't count as disabled enough with all those conditions then I despair. I don't have any answers but have a non mumsnetty hug from someone who has never attempted to learn to drive as the thought terrifies me
Carers legislation means that if your DH remains in work then this is taken into account when any assessments are made. Probably not an issue so much now but in the future this might mean things like respite or support packages being denied because he is there to do it.
Make an appointment with your local council welfare rights person, they will be able to determine if you are claiming everything and help you with the forms.
Hi, have you considered applying to the Family Fund for help towards the cost of driving lessons? They used to fund around 40 hours worth of lessons through BSM but sadly they have now stopped this but I think they may give some money towards lessons, say £500 or so which might be enough? Also look into other charities that can help towards the cost. If you contact the disability team at your council they hours be able to tell you about local charities. Good luck!
Thanks everyone. DS2 gets DLA (MRC HRM). I've asked for the forms to claim for DS4.
SS came and did an assessment for DS2 and DS4. We were told that neither of them qualify for anything and we were sent a filled in form confirming this. We also got a lecture about how the children they help have severe complex needs which made me and DH feel guilty for even asking. Problem is, they don't see DS4's needs, they just see a happy baby lying on the floor or being cuddled. They didn't seem to care about the hours I have put in trying to encourage him to do things.
DS3's free nursery hours start after Easter so if I send him now I'd have to pay.
I knew the family fund had stopped funding 40 hours of lessons but didn't know they were still offering cash towards it, I'll look into that.
I'll contact short breaks team as well.
DS2 gets a free bus pass but I thought you had to get DLA to get that. I'll check with the council though.
Contact the centre where the sensory session is run and ask them if any of their other children get transport and if so who provides it, or if they have a budget for it.
You could also contact homestart as they can sometimes provide volunteers once a week to taxi you or come with you on public transport (though they can't be in sole charge of your child). They also seem to be very well informed about other support services and you can self-refer to them.
You could also contact your local surestart centre and ask them if they have any ideas.
SS are incredibly hard to get money out of and will take forever, but you should still insist on an assessment for your child and a carers assessment for you. You can also ask that your other children are assessed too as 'children in need' (don't worry, doesn't mean much) as they are entitled to a family life not always overshadowed by disability issues. They will ALWAYS say there is no need and that children are more needy than yours, so you have to be persistent. Contact a Family are quite good at directing you with regards to this.
Thanks everyone. Typically it's the expensive fibre optic lights and massive bubble tube that he responds to, although I've got cheap versions at home that he likes but not as much. I spent most of the day yesterday on the phone being passed from pillar to post and getting nowhere so today I'm going to have a break from the fight and do some of the things that I know I will get somewhere with like housework and messy play with the DC's. I will contact sure start, contact a family and the family fund tomorrow.