Tips on how to make a successful application for Disability Living Allowance for children (with general advice about the language used)

Your child is entitled to DLA if they need more help, support and care than NT children their age or children without a disability. They don’t have to have a diagnosis, though of course, submitting diagnosis reports can help.

One problem that people run into with DLA applications is that the assessor who looks at the form will be looking for particular words and phrases to be used. This fact is not advertised and so claimants don’t know what the assessors are looking for. It can be confusing to be turned down when your child is obviously in need of much more care than most children their age.

Here are a list of words and phrases that you should try to use when describing your child’s difficulties and care requirements. I myself have successfully used these words and phrases in my daughter’s DLA applications and also my father’s attendance allowance application. It is not a case of not telling the truth, but a case of describing the difficulties in a certain way.

Attention

Supervision

Substantial danger

(In relation to) bodily functions

Throughout the day/ night

Requires

Frequent

Continual

Restraint

These are not exhaustive but they are the words that I have successfully used and are, I believe words and phrases that have been agreed upon in tribunals in the past.

I will give an example of two ways of describing a child’s needs and the second example is the correct way to describe needs.

1. Lucy is always trying to put her fingers in the plug sockets around the house which is really stressful and worrying for me as a parent because I worry that she will injure herself. She doesn’t understand that this is dangerous.

2. Lucy requires my continual supervision and attention throughout the day because she tries to put her fingers into plug sockets which puts her and others in substantial danger.

Both paragraphs say the same thing but the second paragraph explains it in a way that will help to get the award.

When it comes to mobility, if, like my daughter your child can physically walk but can’t safely make a journey anywhere or requires ‘restraint’ then you can argue that they meet the criteria for higher rate mobility based upon the fact that they have severe mental impairment. Note that ‘restraint’ can simply mean a hand on their shoulder so that they don’t run away when out. My daughter can run like the wind but she has no notion of any danger. She therefore gets higher rate mobility.

Here are some other tips;

– where the form asks you ‘how long’ or ‘how many times a day’, write ‘throughout’. The questions are designed to encourage you to make it looks as if your child’s needs are not as severe as they are. If your child’s ability to do something or their need for your help to do it at any time of the day does not change, you write ‘throughout’

– compare your child with NT children your child’s age. Eg, ‘Emily is unable to walk to the corner shop alone because she becomes distracted and places herself in substantial danger since she is unable to cross the road safely by herself and requires continual restraint to do this from myself at all times. This is in contrast to her NT cousin who is also 12 but is able to do these tasks alone, without her mother, safely.’

– Explain what you have to do for your child every day and explain what happens if you don’t do it.

– Don’t be afraid to repeat yourself again and again. You need to hammer these points home! You need to assume that the assessor knows nothing about your child’s care needs (because most likely, they won’t!)

– To get higher rate care your child needs night care for at least 20 minutes. This includes having to lie with them so that they fall asleep.

– There is no room for anything positive on these forms.

– Never say ‘sometimes’ as this will give the assessor a reason to ignore that point/issue.

– Write your own responses if you have more to say than you can fit into the form.

– if you get turned down, appeal, do not give up!

A note on PIP;

I have applied for PIP for my daughter. She was asked to go to a face to face assessment but her social worker wrote to the DWP saying that it was not in her best interests to be dragged to an unfamiliar place. So they awarded PIP based on available reports. She is in a residential school so there were many available staff to support this.

I am hearing that assessors tell blatant lies about what happened / what was said at face to face interviews. I have heard that you may inform the DWP that you wish to record the interview 10 days before. In doing this you may be able to deter them from lying because if you record their lies you have proof of misconduct.

Always take someone with you to the interview. If you go alone they will question why you could get there alone. And the interviews are often over an hour’s journey from home.

I am going to have more experience with PIP and will post updates on any useful information that I find out…..

Watch this space 👍

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Tips on how to get educational provision for children with SEN

There are many people in this world who believe that when your child receives a diagnosis, they will suddenly become the beneficiary of all kinds of help and support. Sadly, this isn’t the case. So here are a few tips on how to negotiate the system we have to work with.

The first thing, the most important thing to remember is that as a parent, nobody knows your child better than you. And nobody knows what’s best for your child apart from you. And finally, you are the ONLY person who can advocate for your child without conflicts of interest muddying the waters. One of the advantages of being autistic myself in these scenarios is that I’m never swayed by the professionals because in my head, I know I’m right about everything(!) And my obsessive streak comes in handy too because I am like a dog with a bone and will never give up until my child has what she needs.

So, know what your child needs and do not be swayed from that thought.

You have to learn very quickly how the system works. There is a way to negotiate this system, which starts with realising that when accessing educational provision, local authority staff can become quite hostile the minute you suggest that your child needs costly support or anything they do not see as ‘standard’. I won’t go too much into my own struggles except to say that I’ve won two tribunals against our LA and they agreed to name the school I asked for the third time.  I was asking for an out of county provision.

Local Authority staff will tell lies that you just have to ignore. For example, we don’t provide X, your child is too young for an EHC plan, we don’t want to label a child, etc. LAs are required to view a child as an individual and they are not legally allowed to have blanket policies. And sometimes you need to remind them of this. In writing.

Many moons ago, when I was trying to get ABA into my now 16 year olds (then) statement, I talked to another family whose twins were both doing ABA. I remember clearly their words to me

’The LA should be regarded as a cross between Satan and Hitler. Have as little to do with them as possible, except to get your child’s legally binding Statement into place’. *a statement was the old name for an EHC plan.

Certainly, this is a cynical approach. But did it help me? Absolutely, it did. I became uninterested in what the LA were up to because it was clear they would do anything to avoid helping my daughter in order to save money. In the run up to our first tribunal, the one to get ABA, I used the data protection act to get the LA to cough up my daughter’s file to see how they had made decisions about the non existent provision they had (not) put into her statement. I discovered a hand written note from the LA’s own Educational Psychologist which said that ABA was ‘too expensive’, that it would ‘set a precedent’ together with personal comments she felt fit to write about me(!) I may be quirky but this was supposed to be about my daughter!!

The fighting never ends but I would like to offer the following tips when trying to access provision your child needs. This is specifically regarding education. I will do advice on Disability Living Allowance at another time.

– Find out who your child’s case worker is and keep your correspondence with them via email

– keep correspondence to email only. If something was said over the phone or in person it did not happen. Or at least, you cannot prove it was said.

– keep your contact with them to a minimum. They will drain you and you need your energy for the fight to get what you are rightly asking for

– do not be swayed by emotional blackmail shit like ‘oh, by taking the council to tribunal you are depriving other kids of what they need’ often said by people who work for the council.

– In the run up to an appeal / tribunal make sure not to give your case away. Don’t bother to attend meetings with the LA unless you have reason to believe that they intend to change their position. Which occasionally they do but often they don’t.

– use the DPA to dig up information that the LA would prefer to remain private.

– know the law!! Learn the law. This is your key to getting what your child requires. If the LA says or does something illegal then write to them telling them how they are wrong and cite the legal aspect. They rely on people not knowing this!

– If LA staff / representative says something that sounds shady/ incorrect/ bullshit then write them an email asking them to clarify or confirm if this is actually their position. Anything they say in writing, they cannot easily take back.

– When you write an email, copy in as many people as you can. The more people who are copied in, the harder it is for them to tell lies or say things that will make them look stupid, unprofessional or not transparent.

– remember that you are your child’s best and only advocate.

At a time when LAs are making cuts, the council will make it hard for you. But this is not your child’s problem! And your child is entitled to a level playing field.

I became very disliked by certain LA staff. One in particular would sit at Annual Review meetings and make repeated digs at me. I was seen as tricksy and awkward. Did I care? No. Do I see her now? No. Does she even remember my daughter now? I doubt it. She’s not the one who still lies awake at night worrying about her! There are times and places for popularity contests and this wasn’t one of them so don’t be intimidated.

‘Everybody hurts’

Even me. Especially me. But I don’t express it. I don’t tell people when they hurt me. I don’t tell anyone when I’m hurt. I am not sure if this has to do with my autism but I suspect it does. In my mind I’ve tried to work out why this is. I think that somewhere in my being I have an (irrational) belief that showing my feelings is undignified behaviour. So I simply squash it all down inside me. Until now, perhaps. I can accept that my brain is wired differently from other people. But I can also accept that change is possible if I have the self awareness to do something about it.

When someone hurts my feelings, if it’s a friend I tend to run away and just cut them off. I feel as though I can’t fix it. I don’t want to fix it – I just want to get away from those uncomfortable feelings of anger and upset, draw a line under it and go back to feeling calm again.

The one time in my life when my heart was really broken was when my youngest daughter’s father left me, left the UK and refused to speak to me about the fact I was pregnant with our daughter. To this day, he has never met her and has never even asked me about her. I was in so much pain. But I never told anyone about it. I tried to rationalise away my feelings to myself and everyone. I cried in locked rooms. It was probably the most awful time in my life. I couldn’t understand how he could just forget me and disappear without a backward glance. But I also felt that I was not allowed to tell him ‘Hey, you hurt me so much. You broke my heart’. This all became much clearer during my 2 years of psychotherapy. I faced up to the feelings, only because my therapist worked hard to get them out of me. It was all so raw that I had flashbacks and vivid dreams. It was an unsettling thing to experience. But I now feel better.

But this whole thing isn’t just about how I feel. Shouldn’t people be held accountable for their selfish, unkind, cruel and nasty behaviour? If I don’t tell people. If I don’t hold them accountable for hurting me, doesn’t that enable their sociopathic tendencies?

It’s a work in progress. But I believe that I can improve my default response of ‘I’m going to hide from that feeling. That didn’t happen and even if it did feeling upset is pointless.’ Because I matter. My feelings matter too. I’m not numb to the world because I’m autistic. But you may not notice my pain because I have difficulty responding in the appropriate way.

Not knowing I was autistic and the damage a wrong diagnosis can do.

E39F4485-1C3D-42D4-8B07-C18544F8A932I’ve always known that I’m different. At school I remember a teacher shouting at me because I’m ‘not of this world!’ And she’s right. I’m a spectator looking in.

As a baby I cried constantly, 24 hours a day. My mother was exhausted, stressed beyond belief and it’s why I’m an only child.  I did not have a language delay which is the main red flag for autism. In fact, I had a large vocabulary and was speaking in sentences by 12 months old. My mum thought that this must just indicate I was bright.  I also had no problems learning to read or with self help skills. However, I hated nursery. My mum tried numerous times to make me go but I was kicking and screaming the entire time. I hated the unfamiliar smells and bitten plastic cups that I was expected to drink out of. Eventually she stopped taking me. When I started school, things were much the same. Except this time there wasn’t the choice for me not to go. So I just cried every day in reception and my classmates would offer me toys in exchange for me to stop.  I panicked about all sorts of things that wouldn’t bother most children. And I had chronic emetophobia.

I’ve lived my entire life feeling that I just don’t fit. Rather than knowing I had a disability it felt like I couldn’t get anything right. Everything I do is out of sync with the neurotypical population. I don’t communicate properly with people. I need to hide in the house. Anyone coming to my house feels like a violation even though I WANT to see them. It is really not that I don’t like people.  I’ve always done unusual things or experienced unusual thoughts which I keep to myself because ‘normal people don’t do / think that’.

Although I have a daughter with Autism, it never occurred to me that I myself might be autistic except for a friend of mine. He apparently knew I was autistic when I was admitted to a psychiatric ward with my youngest daughter when she was only a few weeks old. I had been having a bad few years of abusive relationships, self harming, little sleep and chaotic thoughts. I had various different psychiatrists try to work out what was going on. Some of them thought I had Borderline Personality Disorder and others that I had bipolar disorder. I ended up being labelled with both. Then I was stuck on Seroquel which just made me feel excessively tired.  The time I had in the psychiatric ward was helpful. It was quiet, nobody could hurt me or shout me. I had a room with a label which said ‘Helen & Isabella’. The days ran according to a set routine. The food was very nice. I fed my baby, rocked her to sleep and read books. I didn’t have to do any adulting. The staff noted that I was a good and capable parent. They were not concerned about my children.

Later, when I got out I found a psychotherapist who worked with me for about 2 years. She was wonderful, and helped me to stop self harming. But I could never easily discuss my feelings because I can’t identify them very well. This is a condition known as Alexithymia which is common in autistic people.

The wrong diagnoses that I received have caused fractious relations and tensions with my parents because various professionals have tried to blame them for my difficulties. The final straw was when I discovered that one psychiatrist had written a report which stated that I must have been sexually abused as a child because of my passivity and inability to assert myself in relationships, and my ongoing pattern of abusive relationships. It was at this point that I decided the truth needed to be discovered because I knew that I had not been sexually abused.  Something here was entirely wrong.

The fact is that Autism can present very differently in women from how it looks in men. A woman’s special interests can be typical of others but differ in their intensity.

When I was finally assessed, using the ADOS I knew without question that I was autistic. The test showed me why. The psychologist gave me a book with no words in at all. She asked me to construct a narrative. I couldn’t do it. I was preoccupied with the strange pictures and not being able to understand them.

l was asked some questions:

’Why do people get married?’

Because society expects it. People are expected to live in happy couples. 

‘What scares you?’

The concept of infinity. The idea that everything goes on and on and on – it makes me panic. I can’t deal with it. 

These were not neurotypical responses. I saw with clarity that my brain is wired differently. It was a relief. I am not the only person in the world who is like this. I just have Autism.

When I look back on my life now, it’s much more possible to make sense of the things that I didn’t understand before. My failure at healthy relationships has to do with the fact that I don’t choose a partner based upon sensible, neurotypical criteria. My ideas about who I should be with are based more upon whether I like the smell of them, or the words they use or the firmness of their touch. I can’t stand light touch. It’s enough to explode a lightbulb in my brain. If someone uses a turn of phrase that irritates me I will end a relationship over it.  Not exactly reasonable but once my desire is gone, it’s gone.

Rudy Simone’s book, ‘Aspergirls’ is a great read for any woman on the autistic spectrum.  It raises some of the issues which people don’t typically associate with Autism and that are quite specific to women. It can really be very damaging to receive the wrong diagnosis. One example of this in my case is that I find SSRI medication very helpful for my anxiety but no doctor would let me have it whilst I had the wrongly applied bipolar label.

If I had known from a young age that I was autistic then I do believe that my life would have been better and I could better have understood myself instead of feeling continual shame that I fail at everything. My parents are a little more patient with me these days and I think they also feel better knowing they are no longer blamed for my difficulties. I also realised that in my baby / childhood photos I hardly ever looked at the camera – go figure. The signs were all there from the very beginning.

‘People shouldn’t judge but they do’

DB243980-E487-4206-A89B-2A075BF01B6EI often hear the parents of children with Autism say that they become isolated from other people.  And I can see why.  People don’t want to understand.  They don’t want to make allowances for your child even though there are plenty of things about them that I could judge! They think your child ‘looks normal’ and have no idea that some people’s brains are wired differently than others. So they might react differently.

So yesterday I took my two younger daughters to a firework display with a friend and her daughter. My friend insisted on going in two hours early, which I knew would be a bad idea and said so but this was just another situation where I allowed myself to be bossed around against my better judgement. My 13 year old is NT. No problems there… The 8 year old has autism but appears to be high functioning. No language delay. Her problems are more subtle. She can engage in every day life and appear to be fine. But when she gets overloaded she becomes very loud. She is not the passive, withdrawn (and therefore more socially acceptable) type of autistic girl that I was. Who was seen and not heard. I have let people push me into relationships I did not want. I have allowed people to do horrible things to me and not react, because I didn’t have (and still don’t really) have the social skills to deal with it.

At the firework display I was trying to explain to my 8 year old that she needed to be careful and sip her hot chocolate because it might be hot and burn her mouth. Since she was beyond processing this, she didn’t hear what I had said and what followed was a bit of a meltdown because she took a gulp of the hot chocolate and burned her mouth. She wasn’t hurting anyone else in what was already a loud environment. But she did become a bit heightened.

My so called friend thought that this would be a good time to say to me ‘Ha, ha, ha that woman just said your daughter’s a nightmare.’ Then later she decided to give her unwanted opinion that my daughter was ‘a lot worse’ than last time we saw them. Well yes, at the moment her difficulties are more apparent. She has very severe OCD which is a common condition to be found in those on the spectrum. She isn’t really very well. And this can be seen by the amount of stimming she does to soothe herself.

Then the commentary continued onto my older daughter. Apparently she’s very ‘chilled’ and ‘puts up with a lot’. Well yes, she’s NT and her brain is wired in a way that fits in ‘properly’ with society. She doesn’t have sensory processing difficulties like me and her sisters. She tells me to ‘calm down mum’ when I get unduly anxious and stressed in a traffic jam. None of this means that she’s superior to my other children. She’s just lucky.

Needless to say I am not ever putting us in a situation like that again.  I do not like fireworks and crowded places. I get overloaded too.  Although it’s less obvious to those around me. When we got home I had a headache and we all went straight to bed. Since I don’t have the social skills to raise this with my so called friend and deal with it then I will just distance myself.  People all seem to have a way of minimising their own behaviour and saying that I’m imagining things so I just won’t bother. And I won’t feel any kind of loss either. Life’s just easier when you don’t have to deal with people and their unwanted, uneducated comments.