Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

**DLA** Oh my goodness SMUG is actually crying - happy crying this time!!!

52 replies

smugtandemfeeder · 01/09/2011 13:48

Just had a phone call from DLA saying they have reassessed the information I sent in and have awarded him high rate care. Oh my bloody goodness. After all that stress and exhaustion and threads on here and set backs and telling me he wasnt entitled to DLA they have given him the highest rate. All for a three year old without a diagnosis.

So the social worker can shove it when she says my son does not have a disability - he has the highest rate of care needs.

I am in shock. I really expected middle rate without a diagnosis, and wasnt sure I would get that even as quite a lot of people here said how hard it would be to prove, even though I know how hard our lives are. Even the contact a family people thought I would get middle rate. Its only a 1 year award but that is good enough for me for now. I couldnt expect more.

So shocked!!!! Very very happy. This will make our live much much better and easier to survive.

Now off to try and get carers allowance backdated and call tax credits.......

OP posts:
smugtandemfeeder · 01/09/2011 19:21

Am eligible for the carers allowance backdated until yesterday when I went back to work I think. Since maternity leave ended im not eligible for it I dont think as you can only earn £100 a week cant you? Still it will be a reasonable backdated payment to add to the others.

Thanks Lougle - I actually ignored all the people who I thought wouldnt help and concentrated on the people I thought would help - namely the private psychiatrist, friends and the childminder. I ignored social services, preschool and nhs pead and made sure the DLA ignored the vexatious social worker.

I dont know if we still need social services - probably in some way. We needed their help over the last 4 months, in the absense of any other help and during a very difficult time for us financially and under extreme pressure from many angles. At least now with DLA and being back at work I can pay for a baby sitter to get some time out without DS, pay for a cleaner to clean up the foulness and chaos. I think that my mental health and that of my DH is now so poor that we may need SS to help us. There is a big risk DH could end up being admitted to the private hospital again and if I could go in they would probably let me have time in there too! But I cant and I shall manage at home. I have to.

Barnardos are speaking to social services anyway on our behalf and have promised they wont let anyone come back and argue with us again about whether we need help. Im trusting them. I have to.

OP posts:
pinkorkid · 02/09/2011 19:45

Well done smug for standing your ground, really pleased you got the award through in the end.

Re the tax credits 3 months backdate, although this is their standard policy of only backdating for 3 months it may be worth appealing that too on the grounds that it was beyond your control that the dla administrators took so long to process the case.

NormaStanleyFletcher · 02/09/2011 19:49

Well done! Smile

smugtandemfeeder · 02/09/2011 20:17

Thank you both. I will try to appeal to the rational softer side of the tax credits people Grin when they say they will only backdate 3 months. I wish I knew how much it was going to go up by. It was nice to be able to tell lots of supportive friends that DS has been awarded higher rate care. I think they were all really shocked - perhaps they thought I was just moaning about a tantruming toddler and didnt really realise how hard our lived were. Even our Sure Start play worker was totally shocked when I told her.

OP posts:
1980Sport · 02/09/2011 20:39

Well done Smug! It's so easy for people to judge and make assumptions when they only see the child for a few hours per week or month!

I hope this makes life easier :)

Lougle · 02/09/2011 21:23

Smug, did you tell tax credits you were applying? If you did, they should backdate to the start of your claim. If they didn't it could be trickier.

Take everything one step at a time. Sorry your DH is poorly, this sort of stuff is a great source of stress.

mariamagdalena · 02/09/2011 21:29

Oh smug Grin I'm so pleased. I know what you mean about being validated. Ben10 is right about the likelihood of an emotional hangover though so be kind to yourself if it does hit. Mine was intense, horrid but short-lived. And when it went the validation stayed.

smugtandemfeeder · 04/09/2011 18:40

Will the high rate DLA award help with my appeal against refusal to assess for a statement? I know disability and SEN are different but surely one makes the other more likely?

Lougle, no I didn't tell tax credits I applied. Didn't realise I had to. Plus they turned us down so quickly initially my only thought was appeal appeal appeal.

OP posts:
Ben10WasTheSpawnNowWeLoveLego · 04/09/2011 18:49

I have HRC Smug and DS is nowhere near being statement material atm. I don't think that it would make a difference TBH

Ben10WasTheSpawnNowWeLoveLego · 04/09/2011 18:55

Sorry DS has HRC.

Lougle · 04/09/2011 20:32

In short, no, having HRC shouldn't make a blind bit of difference to the outcome of a statement application, because they should be looking at the child and their educational needs, as an individual, not having blanket policies.

Additionally, as you say, statementing is about educational need, not care needs, although there is cross over. To give an obvious example:

Child A is severely physically disabled, and requires the support of two adults to use the toilet. She is cognitively typical. She receives HRC component of DLA. A statement would be awarded, because of their physical needs.

Child B has a diagnosis of ADHD. She takes medication in the morning, so her behaviour at school is relatively stable. She sometimes drifts off from the subject of the class activity, and can be inappropriate at times in her behaviour. She often needs reminders from an adult to focus, or stop wandering around, but these reminders are 'short and sharp' and effective. Her medication wears off after school, and her behaviour gets much more challenging. She finds it hard to settle for sleep, and wakes several times in the night. During these wakings, she needs adult attention for her own safety. She receives HRC. A statement is not awarded because the school could reasonably be expected to manage her behaviour in school. She is placed on SA+.

Lougle · 04/09/2011 20:35

Having said that, it depends on why your DS gets HRC.

DD's award at 3.1 said 'blah blah blah....because you need constant supervision right throughout the day (with or without short breaks) and...blah blah blah '

You can be sure that this was plastered throughout every document, because while the HRC itself isn't a criteria for statementing, the fact that she needed constant supervision for her own safety, and the safety of others (would happily flood a bathroom, for example - major slip hazard) was a BIG red flag.

smugtandemfeeder · 04/09/2011 20:46

So whether or not I send off proof of DSs DLA award depends on what they write in their award letter? Is that right? Sorry if I'm asking a stupid question Lougle.

OP posts:
Lougle · 04/09/2011 21:16

No, that's not what I'm saying Smile. But what I'm saying is that they sometimes state reasons that can demonstrate a daytime need that will impact on a school environment. Whereas, if they were to say 'you're getting HRC because LittleSmug wakes up all the time at night, and that's fairly exhausting' , then that in itself isn't a flag that your DS needs more attention and care at school, IYSWIM?

A lot of these things are about emphasising what helps, and minimising what doesn't. If you leave it out, time is wasted because they then say 'well where's that report then?' But at the same time, just because you include a report, doesn't mean you have to refer to it much (or at all).

Equally, just because a report only has one useful line, it doesn't stop you basing an entire page around the one line that was useful Wink

Lougle · 04/09/2011 21:25

Oh, and the other thing is that you really need to tailor your appeal to your desired outcome.

Eg:

I wanted DD1 to either go to MS school with full 1:1 (including breaks, lunch) or a Special School. I was told Special School was not likely to happen, and I knew that our county don't like to give 32.5 hrs 1:1.

I focused my entire application around 'constant supervision, no sense of danger, no attention span, can be disruptive, etc.'

Even the bits that asked for positive traits, I managed to say really positive things that also implied areas for concern.

I also wrote that I wouldn't send her feel comfortable unless she had 1:1 from the minute she stepped on school grounds, to the minute I collected her.

Lastly, I assured them that whatever they decided to do, it was likely to be very expensive Grin

Now, the thing to know, is that if you want a MS placement, it is better to 'play down' disruptive tendencies. Because disruption is the one 'get out of jail free' card the LA can use to force placement outside MS.

naughtaless · 04/09/2011 21:38

Smug, wow, what a feeling eh, you clever girl. Ds has had DLA for years, I re-aplied in Feb, they lost his forms Hmm TWICE and he finally got it a week ago last wednesday. I cried.

smugtandemfeeder · 04/09/2011 21:40

Lougle, this is way beyond my current knowledge. I absolutely realise I need to get some sort of third party involved in helping me work this out. I tried to ring SOSSEN but got stuck when it said most answers are in the Code of practice. It all feels overwhelming. I feel very unprepared and confused.

OP posts:
smugtandemfeeder · 04/09/2011 21:41

naughtaless, its a huge battle isn't it. It's drained me of precious energy. The whole process makes you feel like a liar.

OP posts:
Lougle · 04/09/2011 21:54

Ok, first step at a time:

Why did you apply for a statement? What did you think it would do?

smugtandemfeeder · 04/09/2011 22:05

Because he has terrible terrible separation anxiety and is very confused about what to do when we leave him at nursery. Because if another child is nasty to him or takes something from him he attacks them. Because he has lots of sensory issues such as fear of sudden or loud noises and is extremely sensitive. I know he needs someone looking out for him all the time, to be aware that he will kick off in certain circumstances. He is hugely anxious and would be utterly terrified in school. He hates change or busy places. He isnt potty trained at all yet. plenty of time to fix that but his anxiety is so huge he can't bear to use a potty or toilet with us around him let alone in school.

OP posts:
Lougle · 04/09/2011 22:15

Right, so breaking it down into 'areas':

Separation anxiety
Outbursts if frustrated
Sensory issues
Toileting issues
Possible ASD? (I think that's what you said the psych said last time).

Next questions:

1)What reasons were you given for refusal to assess?
2) What do you think your DS needs to cope with school?

smugtandemfeeder · 04/09/2011 22:22

Reason for refusal was not enough evidence. They said they would reconsider once DS had been to assessment centre but we do not have a date for that and have been waiting since January.

I think he needs someone to show him exactly what to do in every situation. Clear rules. No uncertainty.

Someone to help him in situations when he is scared.

Someone to watch for signs he is going to kick off.

At home he screams and has melt downs all day - no evidence of this so far in preschool but he only goes 1 day a week. 5 days a week is much harder to hold it in. I know he can only hold it in for max one day.

Thanks Lougle. I appreciate your help.

OP posts:
smugtandemfeeder · 04/09/2011 22:23

Also I have a lot more evidence since they refused to assess.

OP posts:
Lougle · 04/09/2011 22:49

No problem Smile

Well, I think your appeal document is going to need to be one that

a)presents the new evidence.
b)explains why the evidence is relevant to their decision to assess or otherwise (especially for evidence like DLA, which has a slightly different focus, but can cross).
c) gives clear, concise examples of situations which have required intervention. Explain what led to the situation, what intervention was needed, what the result was, and crucially what would or could have happened if there wasn't intervention.
d) doesn't just boil down to 'he needs 1:1 all the time', even if that is what you feel he does need. Give the LA some room for manouver, so that they feel they have options, because at this stage it is just getting him through the door that matters. Bear in mind that he hasn't even seen an Ed Psych yet, so there is time to hone down the specifics.
e) DO make a lot of the fact that he gets 1:1 now at preschool, but DO bear in mind that in many areas, the default action at preschool level for a child with additional needs is a blanket '1:1 funding'. For example, at my DD1's preschool, there were two children with SN. My DD and another girl. They both had 1:1 funding as soon as their issues were identified. Now, the other little girl is in MS with very little 1:1 support at all, and DD1 is in Special School, in a class of 8 with 5 staff. Be aware that LAs know that happens.

GossipWitch · 04/09/2011 22:49

Smug he does display some signs of ASD, and I'm so glad you got the DLA. mine went straight on repairs for the things ds1 accidentally damaged, its made our lives a lot easier, and I only get middle rate for him.