To be terrified of claiming DLA for DD? MH problems.

[HavenforHaggis]

Hello,

I'm a first time poster and I really need some advice as I'm desperate. I don't want to drip feed nor give too many personal details as I'll defiantly out myself but I'll try. It's long but detail is needed.

I'm from Northern Ireland. I am a single parent to my 2.5 year old DD who is in the process of being diagnosed for autism. She has little to no eye contact and no desire for affection or to socialise and is currently a non verbal child who communicates by screaming as she can't point (I consider verbal speaking). It's a guessing game from there which could lead to a melt down if I don't find out what she needs fast enough. She is a very routine orientated child. Anything that disrupts her normal routine causes chaos and could take up to a week to get her back to happy and 'normal' so going to a new place of even out is a trial. I've had to ask relative's or friends to either mind her or do my shopping for me. She has sensory issues as well which mostly consist of her horribly sensitive gag reflex which makes getting her to eat even the smallest bit of food a challenge and her biting in order to 'feel' which means she will attempt to take chunks out of herself or other people to the point of making them or herself bleed though this doesn't bother her. Her sleep is very limited and I need to stay by her until she sleeps and stay put for an hour to make sure she is defiantly sleep as she chews her crib, head bangs and launches herself at the wooden bars of her crib, all to avoid injury. Once asleep she will sleep for 4-5 hours max before the cycle continuzes.

My sister has suggested claiming DLA for her. I'm terrified of this prospect as I have some mental health issues which I receive middle rate care and low rate mobility dla for. My fear stems from A friend telling me if I apply for DD they will question how I could care for her if it receive the allowance myself and get SS involved. Am I right to feel this way? Does this really happen?

I know several disabled parents who also gave disabled children, and only in one case were social services involved in questioning the ability to parent, in that case for a very good reason. Please do not worry, go ahead and claim for the money you need to help your DD. If you can, get help making the claim from the CAB or similar. Cerebral used to have a very good guide on claiming for children, I'm not sure if it's still available but it may be worth lookin in to

Just to add in the case where SS were involved it had nothing to do with her DLA claim.

DLA claims are very straight forward, not once during the application was I asked anything about myself or was my ability to parent questioned, I'm a single parent as well. I really wouldn't worry, it's very unlikely that SS will get involved, the whole form focuses on the child, how they react, what they can do etc they won't bother with the parent unless there's a serious enough reason and it absolutely doesn't sound like it in your case, plenty of people with MH and other issues are fabulous parents and it sounds like you're doing a great job.

You may be better off moving this to SN children, loads of experienced people there who could give you great info

My DD aged 3 gets it for developmental delay. Standard care.

I have had social out (false allegation of ex partner) and they were actually helpful. She now has speech therapy which we would of waited years for.

I also have mental health problems (enchanted care standard mobility) including hospital admissions. It was never made out too affect my parenting.

I'm not saying you will have them visit i wouldn't of without that referral.

But if you ever do it won't be that bad.

The DLA claim for your daughter will be assessed purely on the information you provide about your daughter.

If entitled to it, you could claim for carers allowance if she is awarded middle or high rate care.

Your own battles are unlikely to be of note, SS aren't going to magically be interested because you're being financially assisted to do the best you can for your child. Quite the opposite I would have thought.

Good luck.

To the best of my knowledge your claim and your daughters claim are treated separately since a parents ability to care does not influence the amount of dla a child gets. I know several people who get dla or pip for themselves and their child gets dla.
If your child continues to have high needs there is a good possibility that ss will become involved when she is older but this is true of any such child. We asked for involvement for ds in order to access direct payments and there has been no negative impact.

Ds1 gets DLA for Asperger's syndrome and Sensory Processing disorder. They won't question your ability, they are concerned with the care needs of your daughter and if they are 'significantly' higher than a on NT child of the same age. You should definately claim for your daughter.

The Cerbra guide is invaluable.

w3.cerebra.org.uk/help-and-information/guides-for-parents/dla-guide/

OP, don't worry.

In fact I think there are many people who claim, rightfully, DLA or PIP and also get Carers' Allowance - I'd go chat to the CAB and/or a local Disability Rights Group and get help with the forms and they will advise you not to worry.

I used to work for a helpline where we helped parents with DLA forms (and ran a large local group of parents of kids with a similar disability) and held many hands through the old DLA process. I recall quite a few parents on DLA for one reason - and none of them had any SS involvement.

In any case, the SS don't even come out for kids who are in danger, being abused, etc (understaffed) so they don't have time for involvement in this.

My husband is in the process of applying for PIP (He has dyspraxia and is deaf aloong with some oher problems) and if he gets it, I will claim Carer's Allowance for him, which means he - the disabled adult in the family - will be claiming Carer's Allowance for our son. From what I can see online there is no contradiction there, as many disabled people will care for a disabled child. I'd have no hesitation to claim what is your's.

One of my sons is autistic, was diagnosed at the age your child is and got DLA not long after. This was an award "For Life" so we never had to worry about it again until it was changed to PIP this year. Now mysteriously, his autism will vanish in 5 years as his award is only for 5 years!

Children still get DLA not the punitive, harsh, elusive PIP - so you won't be put through the nightmare of a PIP application (my son's change from DLA to PIP was probably the most traumatic 6 months of my life - even counting his original diagnosis). DLA is much more humane to the claimant and much more sensible (and accurate).

I would however enlist help. I got brilliant help at a local Disabled Rights Group - free to me because they're Lottery funded and if we had have to go to appeal, they'd only fight t for you if you use them to help with with the initial application forms. And if they are behind you, the majority of claimants with support from CAB or a Disability Rights group do go on to get an award.

So please don't do this alone.

They will also answer ALL your questions and from a knowledge of current law, and current experience on the ground in your area.

It sounds so so hard, OP. I'm in Southern Ireland so can't answer re DLA etc. But I've been exactly where you are - crouched on a floor, willing my child to sleep so he'll be safe and stop harming himself.

We got a safe bed to prevent the self-harming, one of these: www.safespaces.co.uk

That was provided via the Occupational Therapist by our health trust.

Weighted blankets (you'll find info on those on this site if you do a search) are really helpful for people craving sensory feedback.

Also melatonin can help sleep in autistic children as they can be deficient in it, and threads on that from the SN board will come up if you do a search too.

Some of the chewy tubes (P & Q) you can get on Amazon are v useful for her crave to bite for stimulation. Amazon has a lot of special needs things now at a good price.

Sorry if you know of all these already - the right equipment and resources just make a difference sometimes. Sorting the bed issue, being able to put DS in a safe place he couldn't harm himself helps massively - he can calm down alone when he needs to and I can get sleep. Best of luck.

I'm a disabled parent of 3 disabled children.
Have had contact with ss through child disability team and they've been nothing but supportive, and can see that I am a carer despite my disability.

I get DLA and my dh gets PIP. No-one else lives with us. Technically we "care" for each other, which is interesting as we struggle with pretty much the same stuff, but it's never been questioned. In practice we muddle through and things normally turn out ok. The point is that claims are looked at in isolation and so your DLA claim isn't going to have an impact in any way-it's unlikely they'd even notice tbh, as the databases aren't particularly well linked up.

You could also apply for respite. It needn't be a bad thing if SS are involved.

I know I'm being irrational but I've had SS involved from the start because of my MH issues. It was through no fault of my own, they claimed it was normal and routine for them to be in involved for support but it still terrified me. And after a bad experience with a therapist who decided to call them because of a perfectly normal occaurance in my diagnosis I've been so wary. I grew up with my own mother telling me how SS took children away and that fear has always stuck especially since I have MH issues. I cried every night that they were involved because of the fear.

I'm sorry for the rant. I've just realised I'm spelling my heart out but it's a real fear for me that I can't seem to get past.

*can't damn