Can I claim dla before a diagnosis?

[Crawling]

I have to pay 30 pound a month for dd to attend a specific play group that has small groups and a sensory room for dd assessment process as she is considered too high needs for mainstream school.

Most hcp agree dd is likely to get a diagnosis of autism with moderate functionality. I am struggeling with finding enough money to fund dds extra needs which are constant through the day and through some of the night. I also reqiure help for many of dd day to day needs. Can I claim dla for her even though shes only half way through diagnosis? is there any drawback to claiming ( if I can) before a diagnosis?

it's usually at 1 and she will take 3 hours to get back to sleep.

And my income support has changed from being lone parent award, to carers award, so is only checked every three years for work capability instead of every six months, and then more recently every three months (DD is five in summer).

Right. So if you didn't co-sleep, she'd do that every night. I guess it will come down to whether you are happy to continue to co-sleep. If not, then you will qualify for HRC. If you continue to co-sleep, I think you'll find they don't award HRC because she doesn't do it 5 nights out of 7

I would have it as how she would be in her own bed, as Lougle says, because essentially that would be the aim to have your child be able to sleep in their own bed and you have a decent night's sleep. The co-sleeping is something you've adapted to try to cope, but look at it as the reality of how she is, she would be how if she was in her bed each night?

I cannot co-sleep, which is why I don't do this, and even if I did my sleep would be heavily interrupted, I think it would be more realistic to be trying for higher rate care if she would disturb every night otherwise.

You can't write it as if you didn't co-sleep if you do though. You could write an explanation of how she is now, with co-sleeping, and then 'if we didn't co-sleep, x, y, z would happen....'. I still think they may not award on the basis that she doesn't wake 5 nights in 7.

Imagine someone says 'well we have a stairgate and she can't open it, but if we didn't, she'd be able to get into danger....' The answer would be 'yes, but she doesn't get into danger because the stairgate stops her....'

Equally, imagine someone saying 'well she has epilepsy and takes epilim, which stops her seizures, but if she wasn't taking it, she'd have 2 fits per night and we'd have to get up...' there would be no award.

You can only write factually accurate information.

Just a note though, which may seem contradictory...

The above only relates to night time needs.

Day time needs are different, because the distinction isn't about whether you are awake/caring. It is about the care and supervision a child needs.

So, for day time needs, it is essential (in my opinion) to:

a) say how your child is
b) say what you do which makes your child how they are
c) say what would happen if you didn't do what you do.

For example: "DD1 gets very anxious if her routine is disturbed. As long as we ensure she has her visual timetable, her clothes laid out in the order she has to put them on, her favourite music playing and no lights on, she can co-operate with getting dressed, although I have to put each item on for her. If we don't have everything laid out for her, her anxieties increase to a point that she is aggressive when we attempt to dress her. "

The reason it's not the same at night, is that the default is 'asleep' for parents, so we have to justify that firstly we have to be awake, and secondly, actively caring (although that can include actively listening from another room with doors open to hear that a child has returned to sleep).

Thanks both lougle that makes a lot of sence and I see your point I think dd will most likely get middle rate which I will be very happy with if that's what entitlement dds needs require. Thank you both you've been very helpful.

Are you a single parent Crawling? I am just wondering how long co-sleeping will remain a feasible option and whether it might be getting in the way of you being able to live a normal life?

I know that Jessica could occasionally co-sleep with me, but really it's not a long term solution, as she grows and because she can be very disturbing, if she decides to mess about I can be at risk of being hurt in my sleep.

It is easier to put an alarm on her door that lets me know she is up, so I can deal with her, since you are only using the co-sleeping as a way of being aware she is up, would it not be more in your interests to put forward your case as:

you have temporarily had to share a bed with her, to be aware of her waking to safeguard her, which means that you are able to prevent her from wandering and encourage her back to sleep after 'x' minutes, however if she was in her own bed she would wake 'x' number of times and needs a preventative measure put in place to allow you to be made aware she is awake. The natural progression of a child as they grow it to be able to sleep independently, so whilst it works as a measure right now, shouldn't we be working towards them sleeping in their own bed? Even if that means having a pressure mat to inform you they have gotten up, and alarms/locks to stop them wandering outside of the 'safe' zone at night?

Crawling, I wasn't necessarily saying that . I was saying that you need to decide what is best for your DD, take that action, then write the form accordingly.

So, if you think that your DD is best served by co-sleeping, then write the form on that basis.

If you think that co-sleeping isn't helping her, then it might be best to put her back in her own bed, with some sort of change, such as a stairgate on her door, or a pressure mat, etc. Then, although she wakes more often, you can start to work on that. You'll then be able to write the form on that basis.

For example, DD1 can climb over her stairgate, but isn't likely to right now, however, she'd turn her lights on, start climbing, etc., so we can't just ignore her when she wakes.

I hope you I am coming across the same way Lougle. Just trying to say that it's better to be honest, but to make sure you look at things and think about how they are, but also how they would be if you were to live as normally as possible.

The mistake I made filling out my own DLA application was that I filled it out forgetting that much of the pain I experience and the way I cope with things, is actually much more work than what normal people go through each day, so I put on a brave face and didn't own up to the full extent of my difficulties as such. Now I have help in the for of a carer, I can see just how much I failed to take into account in the application, because I was used to just coping, rather than actually living a life.

Thank you both to Lougle and Rabbits you have both given me a lot of help and advice. I was going to go and fill the form in with someone at the Citizens advice bureau who is apparently good with them but I think seeing all the different ways you have put it I think I may get a pen and start writing overtime I care for dd. Rabbits I am in a relationship but as I have a younger baby who still feeds dp sleeps in a separate bed which is putting a strain on our relationship also I haven't been waking lately when dd leaves the bed as I take a sedative and recently upped my dose of anti pychs so I think it may be time to move dd into her own bed for everyone's sake can you link me to one of those alarms you have please? I had no idea you could get one Iand if I'm honest your posts have shown me there is another way when we have just muddled through as best we could.

here are a few

Thank you

I think for all your sake, that her being safe in her own bed will be better for you, sounds like you have your own health to worry about as well. I used simple loud contact alarms you can get from places like Wilkinsons for a fiver, but I would eventually like to get a silent/vibrating alarm to alert me so she doesn't get so frightened as the loud noise scares her. But needs must at the moment as it was about keeping her safe. Hoping to have OT out at some point to be able to recommend an alarm system throughout the house, but I've got my homelessness to worry about right now, so it's simple measures for me right now.

You should sit down and write down everything you can every remember as far back as you can happening, so that you can ensure you remember all the pertinent points at the appointment, also start a behaviour diary and keep track of her, I use a free app to record notes and behaviour, which you can forward to the computer. Then go down the Cerebra PDF, and write down anything on that that makes sense too, it can help you to realise some things are being missed off due to our own blindspots of the behaviour being normal and persistent to us. Then make sure you do not understate the problems at all. It's my DDs safety I need to ensure, so you know it's kinda important to get the help, me being shy about admitting it doesn't help matters. I had to be blatant about how much risk she was putting herself in.