OMG been awarded dla for my daughter :)

blue_monkey_2

You can get alarms for doors as well, they go off if the door is opened, we had them for the front doors, windows etc until we got better locks and cost around £5 for 4 from places like B&Q. These realy are worth the investment for peace of mind. Put them right at the top so the kids cannot eaily get to them. It'll wake you if she gets up in the night.

Window locks are a neccessity and you could get padlocks for the fridge and food cupboards and lock them at night. or one big cupboard and lock it. I've had to start hising all of our foods too. It's a nightmare.

toomuchinfo

Well done on getting the DLA, it will be a big help. It doesn't sound as if your daughter would meet the criteria for HRC, we get it for our autistic son, but the night times are horrendous and I wouldn't wish them on anyone.

Where I live, if you get DLA for your child at any rate you can contact the child disablilty dept. of social services who will come to do an assessment and see what help you might need help with.
My DS has a taxi from school, out of the special needs transport dept of the Education department. He's is in a special autistic school. When he was getting his Statement of special needs the paed. wrote that he would need transport to school, not shared, and this is written into his statement.

teabag29

Thanks ladies. I have got window locks and they are locked at all times now. I never thought about a door alarm, great idea. I had stair gates with alarms on that I used for the door and stairs but dd broke them. The awkward thing about a door alarm though would be it waking up the other kids. Its already causing huge problems as daughter shares a room with her 2 sisters and she is jumping on her bed and singing and shouting nasty things until very late at night and so they cant get to sleep until she settles and they wake up very grumpy and tired. If a door alarm was going off in the night too once they'd settled this would cause them further distress, its a catch 22 situation.

Yes the council and school have both said that to meet the criteria for transport on behaviour problems grounds she has to be on the higher rate of care or on the grounds of learning problems she has to be fully statemented.

shegirl

teabag29 wrote: »

Thanks ladies. I have got window locks and they are locked at all times now. I never thought about a door alarm, great idea. I had stair gates with alarms on that I used for the door and stairs but dd broke them. The awkward thing about a door alarm though would be it waking up the other kids. Its already causing huge problems as daughter shares a room with her 2 sisters and she is jumping on her bed and singing and shouting nasty things until very late at night and so they cant get to sleep until she settles and they wake up very grumpy and tired. If a door alarm was going off in the night too once they'd settled this would cause them further distress, its a catch 22 situation.

Yes the council and school have both said that to meet the criteria for transport on behaviour problems grounds she has to be on the higher rate of care or on the grounds of learning problems she has to be fully statemented.

It sounds like you need to do something about the sleep routine there.If there is no way around the sharing and she's up much later than the others you need to find some way to calm her down before bed and do everything possible to do this and ensure less disruption for your other kids.Even if it involves her staying downstairs with you for a while,there are ways and means,yep it's inconvenient to parents but that's part of life with a disabled/sn child.I'd love peace in the evenings but it will never happen and I have to do what's best for ds rather than me (hence why I'd scoff all that chocolate )

Definately look into the alarms,they may or may not wake the other kids but again you have to do everything possible It's all a pain in the backside but I for one wouldn't change my son (ok so I'd make things less painful for him):D

skater_kat

congrats on getting the dla teabag.

there is another thread on here about discounts for people on dla, really useful to take a look at.

SingleSue

Re food, I had to take to locking items in the boot of the car as middle son had broken a fair few kitchen (had them right off their hinges more times than I can remember and completely smashed panels) and several alarms/cupboard doors in his quest to get to whatever was locked in the kitchen.

I get high rate care/low rate mobility for youngest but his complex autism is not his only disability, he also has severe asthma, bowel disorder, hypermobility/EDS, multiple food allergies and intolerances and digestive problems so if it isn't one problem having me up during the night, it is another! Middle son does not receive DLA at all despite having Aspergers, partially deaf, bowel disorder, brain damage, extremely poor short term memory and probable EDS. He cannot go outside on his own as he is completely naive and trusts everyone (completely different to youngest who trusts no-one and doesn't like people at all) and has no sense of danger...even at the age of 14, he still doesn't realise he has to check before he crosses a road or just completely forgets to do it! The loss of DLA was courtesy of a positive report from a brand new school at age 10 (I was mid breakdown at the time and didn't fight it)

Neither of them receive transport to school, apparently I made it inapplicable by them going to an out of catchment school and by me putting it on the form....even though it was where they advised they should go!

Both are statemented.

PurpleSky_3

I used to work in the Benefit Field until I became ill myself, and using both of these experiences I would advise ANYONE to appeal against a DLA decision if you think it is not correct.
It took 18 months of fighting, 2 Appeals and a request to go to Tribunal before we were awarded a 'fair' rate of DLA and my husband was able to claim Carer's Allowance. Initially I was refused DLA outright - and was awarded neither the Care or Mobility component. After the 18 month 'fight' I was eventually awarded the high rate of care and low rate of mobility - so it is definitely worth it.
DLA is NOT assessed by medical professionals, it is assessed by people who are trained to assess DLA. Your case will not be looked at by anyone with medical knowledge until you get to Tribunal level (We never actually got to Tribunal - my award was changed as soon as we requested a Tribunal).
Your DLA will NOT be stopped while you appeal, the payments will continue at the rate you have been awarded, it is EXTREMELY unlikely that the award will be lowered.
To get the Middle Rate of Care upped to the Higher Rate you will have to show that your daughter needs attention 'frequently' during the night as well as during the day. I would write a letter of appeal stating all of the situations when you have to give her attention during the night - the average number of times per night that you have to give her attention - and how long each situation takes to be resolved.
I will have to say the issues such as behaviour difficulties and Mental health are the hardest to get acknowledged in full by the DLA but I think that this is slowly changing.

SingleSue... PLEASE reapply for your middle son's DLA! It won't make any difference to your boys getting free transport to school but it will help with costs!

Nothing frustrates me more than deserving people not getting the benefit they are entitled to!

sock-knitter

both my sons had transport to school written into their statements, it had nothing to do with dla. since then only one son gets it, as the others school is within walking distance, and has had independant travel training, to get him used to going by his self, other son would need to catch 3 buses so wasnt practical for him.
both receive high rate care and low rate mobility

teabag29

Now that I have been awarded dla do social services have a duty to asess my daughter for help? It would be really nice to get some respite every now and then but I have no support network at all and husband works 12 hour shifts. I would also like to see if there is any services in the area that dd can access. I also thought it might strengthen my case to get daughter moved up to school action plus and stop the bullying if I had a social worker on side who recognised her needs. Do they have any duty to help my daughter (even though she has no diagnosis as of yet) and if so how do I go about this?

shegirl

teabag29 wrote: »

Now that I have been awarded dla do social services have a duty to asess my daughter for help? It would be really nice to get some respite every now and then but I have no support network at all and husband works 12 hour shifts. I would also like to see if there is any services in the area that dd can access. I also thought it might strengthen my case to get daughter moved up to school action plus and stop the bullying if I had a social worker on side who recognised her needs. Do they have any duty to help my daughter (even though she has no diagnosis as of yet) and if so how do I go about this?

Contact the disability team and ask for a carers assessment.It can be lengthy (and dull) but it will highlight to them anything you could need,however it doesn't mean you will actually get anything.They may be able to help and they may not.There are various forms of help available from overnight respite (the hardest form to get and is very limited) and there are inclusion schemes to assist the kids in joining in with the community,clubs etc,they can do referrals for horse riding for the disabled etc and there are direct payments.

Unfortunately none of us can tell you what you would get if anything but it's worth a shot.They can assist,if deemed necessary,with education to a degree too (with my sons they help a huge amount)

I currently get one overnight respite a week and an additional 2 daytime sessions from 10-4 in the holidays.I can get more if I want and it has been offered despite being so limited but I don't want to take it at present,although now my son has hit puberty and has been out of school since october I'm considering lol The aggression...WOW!!! This morning when the electric went he had an anxious rage and smashed all the lightbulbs and broke yet another 2 doors!!!!