DLA - undiagnosed 4 year old

[dekra]

Hi everyone,

 

I am in the early stages of getting my son assessed as we suspect he may be on the spectrum. It has taken months just to get the inital referal done correctly and an appointment made for next month.

 

I know the diagnostic process is slow and it could be around 18 months before we get a dx.

 

Having had to cut my hours at work as my son requires so much more supervision than an average 4 year old and because he has me awake so often each night I have applied for DLA for him in the hope that they will recognise the stresses and strains this puts on the whole household.

 

Can anyone shed a light on the processes after the application has been sent in please? I used the cerebra website guide for filling my form in and have a section filled in by the health visitor that knows us and my sons issues. Will they contact the HV and GP (I have given them permission to do so) and do they require a medical assessment by their own Dr? I am doubtful he will be awarded the DLA as at 2 weeks short of 4 they may say that night waking and supervision is a natural part of a childs life. If he was observed for a short period my son seems a average little boy that just doesn't say much.

 

Also I have heard that with the financial situation in the country as it is that they are refusing many more claims than normal. Has anyone else been refused DLA and if so is it worth appealing?

 

Thanks in advance everyone.

Edited July 18, 2011 by dekra

[spam390]

Hi there,

 

I get the middle care rate of DLA for my 9yr old daughter who has asperger syndrome.

 

She also has MPHD ( a condition affecting her endocrine system) and was given the middle level of care rate at 18 months old, however the rate was cut to the low rate when she was 7yrs old as they claimed she could help herself more at that age ( she has daily medications and injections).

 

When I re-applied (which is done every 3 yrs), I stated EXACTLY what social, emotional and physical issues she had ' above and beyond what is expected of a 'normal' 7yr old 'we had the rate returned to the middle level of care, even though at that stage she hadn't even been evaluated never mind diagnosed.

 

A very useful book for helping with filling in all forms concerning any allowances is ;

 

'THE PARENTS GUIDE BOOK for claiming allowances for their children with developmental disorders including autism, asperger syndrome,ADHD, dyspraxia (DCD) and dyslexia.Dr. James Duncan (2009)

 

I would advise you to definitely appeal if you are refused. Remember to make sure you include EVERY LITTLE DETAIL such as having to spend 10 mins helping your child get dressed, 20 mins encouraging them to eat or 2hrs trying to get them to settle to sleep. Whatever your individual issues are then they need to be detailed.

 

Remember to include what ATTENTION ( to calm, instruct,inform,listen, etc ), SUPERVISION (socially, environmentally, physically) ENCOURAGEMENT (emotionally, physically, socially etc) EDUCATION (eg learning to tie laces, cross roads, not to talk to strangers , get dressed, greet people ETC).

 

All this information should be repeated ad nauseum at EVERY relevent part of the forms and definitely included in extra sheets. Also relevent are any details of what has/may happen if this 'extra' help is not provided eg. child runs away across a road or child will not eat and gets constipated etc - the extra care you are providing is to PREVENT these things happening.

 

Thankfully I have not had any issues with obtaining DLA but I am a paediatric nurse and know exactly how to detail EVERYTHING I have to do to keep my child healthy and safe, I know of several parents locally who either haven't claimed (and are definitely in the qualifying bracket) or who have been refused and given up.

 

Please try the suggested book as it's really excellent at detailing everything and don't give up !

Remember that perseverance is the only thing needed to ensure you get the money you need to help care for your child. ( with DLA and carers allowance amounting to almost £400 p.m. in total ).

 

I wish you all the best. x

[dekra]

Thanks Spam.

 

I will definately look out for that book, my forms have been sent now but if I am rejected or when it is time for renewal it sounds invaluable. I really do hope we can get this award, I am starting university to do nursing in september and want to be able to give up my part time job so I have time with the family. DLA will allow me to do that and still be able to do the things that my son enjoys and to have the time with him to do them.

[Tally]

It is definitely worth appealing if you get turned down, as many rejections are overturned at appeal. You were very wise to seek support from Cerebra, as they can help you get the right wording for the form. If you need to go to appeal, the National Autistic Society may also be able to help you.

 

They normally will contact the GP and HV. If you haven't already, it would be worth visiting the GP to discuss your son's support needs. You could even take a copy of your application for them to look over. At appointments with a GP you normally discuss medical issues and they can sometimes be unaware of the level of support someone needs. It may also give you an idea as to whether the GP is likely to support your claim.

 

They may want a medical by their own doctor, but this is not always necessary, especially if you have submitted thorough medical evidence with your application.

 

Although DLA is based on individual needs rather than diagnosis, the diagnostic process is useful for identifying and documenting these needs. The most likely problem you will have at the moment is a lack of documented evidence. If your HV is willing, it might be useful to ask her to write a more detailed letter about your son's support needs.

[spam390]

Hi again,

 

I forgot to add that when you do get DLA, apply for carers allowance and also make sure you tell Child Tax Credit as you will be entitled to extra 'disability' money too. I'm not sure how it affects Working Tax Credit as I don't work but I'm sure you would get extra allowances for childcare etc.

 

Also, if you are applying for university childcare help be sure to tell them you are applying for/getting DLA as they often have priority placements for children available (can't hurt to ask !).

 

Basically DLA has a domino effect, enabling you to get all sorts of help.

 

For example, cineworld card (carer gets in free ), access to leisure cards (free or reduced prices for whole family for swimming, sports etc), cheaper theatre tickets etc.

 

You can also use your student discount card (remember to inform council when you are a student to get reduction in council tax).

 

All these really add up and help with day to day living.

 

All the best. x

[dekra]

Thanks again Spam. I will be letting tax credits know when and if I get an award. I am unsure if I will apply for carers allowance as I would be eligible at the moment as I only get £96 a week for working part time. But when I start uni in Sept that is specifically disallowed for carers allowance. Depending on how long it takes to get an award not sure if it would be worth applying.

 

I have been thinking a lot about the difference the extra money would make for F and for the whole family and if you combine the DLA and the extra tax credits I think the best use I could make of it would be for us to move to a bigger house. At the moment we live in a 2 bed terraced house and as well as F we have a 10 month old daughter. She has slept through the night from before she was 4 weeks old (after the years of constant night time disruption with F this was astounding) and at the moment we just cannot consider putting her in the room with her brother. So moving to rent a 3 bed house and renting this place out with the DLA would mean she could get her own room, hubby and I get our room to ourselves again for first time since F was 17 months old and F would benefit from his room being his own, probabally giving him the largest room and putting a trolley bed in there for bad nights so I have somewhere to crash. Does that seem fair?

[dekra]

Tally, I feel a bit self-conscious about approaching my GP regarding the DLA - I feel so money grabbing. But I will be making an appointment to discuss things further after F's initial assessment in a few weeks. I will hopefully have more info from the assessment team and be able to discuss that and my needs more with the GP.

 

Until recently I have not really approached the Dr's about F and his support needs as unless it was something I was concerned about medically (like when he started to become incontinent after months of being dry) then I felt I was just supposed to be getting on with it as a Mum should. My HV has always been my first port of call with his behavioural and speech issues but even then she's not been that much practical help, beyond a referal for speech and language and to get his hearing checked. In fact the nursery school were much more proactive and were the ones that got the educational psychologist involved quickly and chased up the localised issues with speech therapy (staffing issues grrrr).

 

I think I buried my head in the sand about things too long, hubby and I had concerns about F's development for a couple of years before we really started pushing for some answers - the number of times we were told it's normal for some kids to be slower at talking ect than others was a joke but we didn't listen to our instints and should have.

[Lynden]

Personally, I would be hesitant in taking on a bigger rental/mortgage based on DLA as you aren't guaranteed that it will stay at that level - especially as your child is quite young.

 

Definitely apply though, sending as much documentation as possible, particularly because you don't yet have a diagnosis. Good luck!

 

Lynne

[Karen A]

Thanks again Spam. I will be letting tax credits know when and if I get an award. I am unsure if I will apply for carers allowance as I would be eligible at the moment as I only get £96 a week for working part time. But when I start uni in Sept that is specifically disallowed for carers allowance. Depending on how long it takes to get an award not sure if it would be worth applying.

 

I have been thinking a lot about the difference the extra money would make for F and for the whole family and if you combine the DLA and the extra tax credits I think the best use I could make of it would be for us to move to a bigger house. At the moment we live in a 2 bed terraced house and as well as F we have a 10 month old daughter. She has slept through the night from before she was 4 weeks old (after the years of constant night time disruption with F this was astounding) and at the moment we just cannot consider putting her in the room with her brother. So moving to rent a 3 bed house and renting this place out with the DLA would mean she could get her own room, hubby and I get our room to ourselves again for first time since F was 17 months old and F would benefit from his room being his own, probabally giving him the largest room and putting a trolley bed in there for bad nights so I have somewhere to crash. Does that seem fair?

 

Hi.

I think it is worth bearing mind that as another poster said it is a risk to use the DLA towards a long term committment such as housing.Ben was awarded DLA but although I was not told it was for about two years.So I have just completed a new application and will need to see whether it is renewed.Very few people are awarded DLA for longer terms automatically now.

Also the current government may review DLA again.

Do appeal if you are turned down though.We had to ask for a review once we had an AS diagnosis and more evidence to support the application and were then awarded DLA.

 

Karen.

Edited July 20, 2011 by Karen A

[dekra]

That does make sense about a longer term commitment. I could consider putting DLA and extra tc money in an account and see if it is enough to convert the loft into another room. Depends on a lot of things including the level of any award if one is made. Best no to start spending money we don't have! I guess I am a bit frustrated at the moment that there is nothing I can do to help get answers regarding dx. Hopefully I will be more settled and less worried after inital assessment.

[dekra]

I have just had a phonecall from the DM at DLA office.

 

She was asking me lots of questions and saying my main issue (as some of you predicted) is lack of dx and medical reports. She is going to phone my HV for more info as HV has know of Finn's ongoing issues for years. Hopefully that will be enough but I seriously doubt it.

[dekra]

Well I have been refused as expected. F needs must arise from a disability and I haven't proven that or shown that his needs are greater than that of a child his age.

 

The lady on the helpline I called when the DM didn't call me back as she said she would told me to dispute it once my letter arrives.

[KezT]

Not wanting to sound too pessimisic - but I should point out that it is very difficult to get DLA for a 4 year old generally, because for any DLA award you have to show that they have care needs sustantially above that of a person of equivilent age, but without the disability. Therefore, as an NT 4 year old would need constant supervision, has no idea of risk analysis, can not buy or prepare their own food etc etc, it is difficult to show where the additional requirements of their disability is unless you've got some nic simplistic physical care needs....

 

IMO, unless the child is profoundly autistic, or has other disabilities, it is highly unlikely that you will get DLA under the current criteria until they are at least 8 years old.

[justine1]

Not wanting to sound too pessimisic - but I should point out that it is very difficult to get DLA for a 4 year old generally, because for any DLA award you have to show that they have care needs sustantially above that of a person of equivilent age, but without the disability. Therefore, as an NT 4 year old would need constant supervision, has no idea of risk analysis, can not buy or prepare their own food etc etc, it is difficult to show where the additional requirements of their disability is unless you've got some nic simplistic physical care needs....

 

IMO, unless the child is profoundly autistic, or has other disabilities, it is highly unlikely that you will get DLA under the current criteria until they are at least 8 years old.

Hi

 

I agree with KezT.I have two sons with ASD and one gets DLA the other I have not applied yet because of the above reasons.He is 5 years old and I do not feel his care is that much different to any other child the same age. He attends a mainstream school and also goes to a childminder. whereas my (almost) 8 yr old had missed out nearly a year of education and was on half days at school,making it difficult for me to work at the time.He is more of a challenge,not physically but mentally draining.

 

I started full time uni last september,as he was statemented and attends an ASD unit.I found a childminder to care for him but it only lasted 2months due to his behaviour, then I was stuck. I have managed to rely on family since but with their own problems I have had to now put my course on hold as I have to be home at 3.25pm when his taxi brings him home.

 

I had reports from three professionals to help with my DLA form so it may be worth waiting until your son is a little older.From my experience the true "problems" at school only show somewhere in Year 1 when there is less free play and more expectations on the child. Hope that helps .

[dekra]

Considering that his sleep is disturbed between 3 and 12 times a night (most nights are over 6 times) that should certainly count. His language skills are almost non existant although he now has plenty of words he still can't use them to form sentences - developmentally his speech is that of a 2 year old. His sensory issues with noises make even a simple shopping trip a risk that he can be greatly upset. You put him beside a couple of children his age and you can see clearly the differences. He has little comprehension of speech beyond basic instuctions. He is incontinent despite initially being toilet trained when he first turned 3. I could go on an on but wont, I will save that for DLA lol.

[justine1]

Considering that his sleep is disturbed between 3 and 12 times a night (most nights are over 6 times) that should certainly count. His language skills are almost non existant although he now has plenty of words he still can't use them to form sentences - developmentally his speech is that of a 2 year old. His sensory issues with noises make even a simple shopping trip a risk that he can be greatly upset. You put him beside a couple of children his age and you can see clearly the differences. He has little comprehension of speech beyond basic instuctions. He is incontinent despite initially being toilet trained when he first turned 3. I could go on an on but wont, I will save that for DLA lol.

My Dan was exactly the same since two until a year ago,he has come on along way since mostly because he is at a very small mainstream so already gets 1:1 for most of the school day.He will always be delayed in some way but I think with the DLA the look at the bigger picture and this will include school. They will also look at why he is getting up so many times in the night, what are his needs in the night? how long he is up each time etc.

 

I know its frustrating Dan used to sleep just 3-5 hours a night,in between that he would either be screaming in pain or just be playing with his dinosaurs. Because of his speech delay he would scream loads as a way to communicate,he also wouldnt walk anywhere due to joint pain so was in a double buggy with his baby brother until he was nearly 5.

 

I dont think anyone would discourage you from applying for DLA its just you have to have alot of evidence and it hard to prove unfortunatley.

[KezT]

I'm not saying that they don't have substantially higher care needs than an NT child of the same age - we ALL know that they do -even if you just take into account the emotional stresses of parenting an ASD child! I'm saying that it is extremely difficult to hit the DLA criteria with a 4 year old with autism, because the nature of the disability does not work well with the DLA tick box criteria!

[dekra]

We shall see anyway. Just wish I had more answers not just for them but for myself and F. I have had almost no backing from professionals other than the nursery staff. That's the important thing I need to focus on.

[LisaKaz75]

Hi

 

just want to say I get DLA for my nearly 4 year old. He does have a diagnosis of autism and received full time one to one at preschool (and has a statement for the same at school)

As others have said you have to stress the differences between your child and others the same age. Although my son has no danger awareness, regularly tries to run away, can not dress/ undress himself as other 3 year olds can, the factor that seemed to swing it is the fact that my son is not toilet trained! He regularly sees a continence nurse and we have been on a program to try and get him trained for 12 months (and his preschool follow this too), but as he still needs regular nappy changes, that seems to be what got his award

We have been told that once he is toilet trained we need to contact them as he will then not be eligible under the current award. However, they will reassess and see if there are other differences

 

hope this helps

 

lisakaz

[dekra]

After a few days of doubts about if I am over-reacting I just had a full nights sleep as my son has gone to his gran's for a couple of days. She lives quite far away so he only stays over a couple of times a year so this is his first trip away since Christmas. My batteries are refreshed! 8 hours of sleep will do that. I was actually awake at 6am just lying there wondering what to do as I waited on the baby waking! (Which she only did 5 mins ago, by which time I had given up and got up lol).

[dekra]

Had a phonecall from DLA today about the reconsideration. She asked me a lot of questions again, about night-time, about Finn's toileting and about giving him instructions.

 

One of the questins she asked was if I told him to go get a biscuit was he capable of understanding and doing it. Yes he is. Then she asked me if I need to have him facing me when I give him that instruction or if I can just do it without him looking. I never realised before but yes I do need him to be right infront of me. It's just so second nature to tell him things that way I never thought twice about it. Is this something often common in ASD children and if it is I am wondering if that means the decison maker that is re-assessing the claim has knowlesge of ASD if she is asking this question specifically.

 

So I don't know the decision at the moment, she said she will be making the decision in the next couple of days and I should get a letter in the next 7-10 days. So I might know by the time we go for Finn's assessment next Wednesday.

[Tally]

One of the questins she asked was if I told him to go get a biscuit was he capable of understanding and doing it. Yes he is. Then she asked me if I need to have him facing me when I give him that instruction or if I can just do it without him looking. I never realised before but yes I do need him to be right infront of me. It's just so second nature to tell him things that way I never thought twice about it. Is this something often common in ASD children and if it is I am wondering if that means the decison maker that is re-assessing the claim has knowlesge of ASD if she is asking this question specifically.

She may actually have been thinking more about deafness.

Anyway, that's not really important, what matters is you've been able to give some more evidence of your son's support needs. And maybe also highlighted an issue worth mentioning at his assessment.

 

Try not to worry too much if the decision does not go in your favour at this stage. The assessment should provide documented evidence of Finn's support needs which could be useful evidence if you need to appeal.

[dekra]

Deafness never occured to me as that had been ruled out by a hearing test last year, can't remember if I mentioned that on the application form.

[cmuir]

Hi

 

Should you have to re-apply or cover more questions, thought this might be helpful...

 

I applied and got DLA for my son when he was 4 pre-AS diagnosis. I can honestly say that I filled out the form accurately without over embelishing anything - I didn't need to! We were successful first-time. The key is to sit down and consider 'a day in the life' from getting kiddo up in the morning, washing, dressing, eating, toileting, sleeping, etc. Also consider health and safety issues, stranger danger, road awareness, general awareness of dangerous situations e.g. climbing, kitchen (cooker, iron, etc). Think about whether kiddo will go to bed and settle easily or not and whether he sleeps right through or whether he gets up at 3am demanding a bath! The aim of a DLA form is to ascertain whether or not your child is harder work to look after than a neurotypical child of the same age. It's also worth speaking to e.g. nursery/school/head teacher, consultant, etc and ask if they'd mind if they were contacted for DLA claim. Lastly, a child does not have to have a diagnosis to qualify for DLA. Remember and keep a photocopy of your form. I don't know how the land lies now with all the cutbacks, etc, but it's certainly worth a try.

 

C.

Edited August 16, 2011 by cmuir

[dekra]

Thank you cmuir. It's very frustrating, I called today - a decision has been made but it's off to dataimput to be entered on the system so no-one can tell me one way or another at the moment. I'm a bit negative nellie today and expecting another refusal. I will fight it however, his needs are so much more than other 4 year olds and new idiosyncratic behaviours are developing all the time. His latest means complete hysterics if you move into the anything but the left hand lane on a dual carriageway or motorway. That includes slip roads joining and leaving the road. Over-taking is a no-no now but I can't do anything about slip roads and exits.

Edited August 17, 2011 by dekra

[JsMum]

My son recieved DLA at five after Tribunal and he had NO Diagnosis at all at the time, he did have Developmental delays though and behavioural, emotional and learning difficulties identified, his school at the time J was on school action and was recieving SALT both at school and at the clinic, we recieved DLA Care later on in renewals he recieved DLA Mobility and Care and later we went to tribunal for high rate mobility.

 

My son has recieved diagnosis from 7 upwards as he has comorbids and comlex needs.

 

You do not need a diagnosis for DLA as others have said sometimes diagnosis dont come throw until their older even though they had NEEDS before their daignosis came throw and for some children diagnosis never come at all only arriving in their adulthood or some adults remain undiagnosed throw out there life but they still have had needs.

 

DLA Mobility you have to prove he requires supervision, guidance and preventative mesures to ensure his safety, fore example restraint, visual support, preparing a task before hand.

 

There is DLA support guide with the National Autistic Society.

 

http://www.autism.org.uk/living-with-autism/benefits-and-community-care/disability-living-allowance.aspx

 

http://www.cafamily.org.uk/families/rightsandentitlements/benefitstaxcredits/dla.html

 

http://www.cafamily.org.uk/families/adviceandsupport/helpline/faq.html

 

 

Also reguarding the Loft instulation if you require more rooms due to your sons ASD needs you can apply for a Disability Facilities Grant though again this can be lengthy and stressful.

 

http://www.direct.gov.uk/en/DisabledPeople/HomeAndHousingOptions/YourHome/DG_4000642

 

My son also had fiv.e hearing tests because many people thought he was deaf, he has been assessed as having a Auditory Processing Impairment, he is not deaf, infact he has hypersensitive hearing, but certain tones and volumes he has impairments.

 

Look up Auditory Processing Disorder/Impairment.

 

http://www.apduk.org/

http://www.cafamily.org.uk/Direct/a82.html

 

I really do recommend that you do appeal and go to tribunal if you are turned down.

 

JsMumx

[dekra]

That's great about the possible Loft grant JsMum ty! And I shall be reading up more on auditory processing problems for the rest of the afternoon! Won't know if it's anything that effects Finn but if it is all the info I can get helps me understand him and anticipate his needs better.

[dekra]

Great news, Finn has been awarded MRC for 2 years! I am so relieved, not so much for the money but that someone has taken me seriously regarding his needs IFKWIM!

[dekra]

So just wanted to say thanks to everyone for the encouragement and guidence. And anyone else in the same boat - reconsideration is worth it and the cerebra website is so helpful with your forms!

Edited August 19, 2011 by dekra

[Kathryn]

Great news, well done!

 

K x

[bb1976]

Thanks Spam.

 

I will definately look out for that book, my forms have been sent now but if I am rejected or when it is time for renewal it sounds invaluable. I really do hope we can get this award, I am starting university to do nursing in september and want to be able to give up my part time job so I have time with the family. DLA will allow me to do that and still be able to do the things that my son enjoys and to have the time with him to do them.

 

I was turned down twice and had to go to trubunal without a diagnosis for my son and at the tribunal the board stated that he should of been diagnosed by now an even told me to go to my local mp for help as my son really needed it? good luck and dont give up x