trying to get help for A level course

[Karen_L]

Hi, my daughter is 15yrs old, is an active member of this site. She was diagnosed February last year.

I am sure I don't need to tell you as parents how difficult it is for our children to be able to attend school due to the ill health.

Vikki has been attempting to go to school part-time since April last year with the help of a home tutor to keep her up to speed with her course work for her GSCE's, and thanks to that is able to keep up and is doing very well. (before the diagnosis, she missed alot of school and was falling behind)

Vikki wants to stay on at school and do her A Levels, but I have been informed that the home tutor, paid for by LEA, will finish at the end of Vikki's GCSE's. Ok, so what help will she get.

Well up to now I have been told NONE. When she is 18+ she can apply for a Disabled Student Allowance, but there doesn't seem to be anything for 16+.

I am now trying to fight this and have been intouch with IPSEA.CO.UK who have been very helpful.

I just wanted to let you, as parents be aware what problems you may run into.

I was never told about having Vikki assessed for statementing through the LEA, this will protect your CHILD! and I would seriously urge you to do so especially if your child is missing quite a lot of school.

I haven't read any of the posts yet, please forgive me if this has already been mentioned, but has any one told you that your child should be able to get DLA. I was suprised at this, but I am now glad that I did apply, as Vikki will be allowed to learn to drive at 16yrs old. She is protected by the DDA, and she has now got a blue badge when she is having difficulty in walking. The forms are difficult to fill in your local CAB will help fill these in. I took it for granted that I am her mum, of course I will look after my child, but when you realise what you are doing for yours that they should be able to do for themselves, you soon realise that you are doing more than a normal parent.

I didn't want to claim on my daughters illness, the money comes straight out of my bank account, half to her for pocket money (her friends have part-time jobs) and the other half into an small cash isa account for her when needed. Your child is entilted to this benefit, so why not let them have it.

I do hope that I haven't spoken out of term, or offended anyone, but no one tells you about what you/your child are entitled to. So I thought I would share my findings with you.

Love and best wishes to all of you

stay strong

Karen xx :tantrum: :jump: :nurse:

[alobreto]

I'm glad to hear that they have this in the UK. In the US they have a similar program through SSI, that is administered by Social Security. We all pay for this and I think those who qualify should apply as every little bit helps improve our lot.

I have a 6 year old developmentally delayed neice who gets SSI and this helps to pay for her medications and extra tutoring to try to help her reach her potential. She also gets different kinds of therapy such as Speech therapy which is VERY expensive and only partially covered by her medical coverage as there is a yearly cap. Our school district is too small to provide these services.

You go, girl! We as concerned adult family members can help tremendously in being advocates for our young people.
Regards,
Angela :flowers:

[clare42]

:flowers: :flowers:
Hi
I Have a statemented child who will attend 6th in september, has your daughter got a statement? if so it can be carried on for a 6th form attached to a school but not for a college of F E (further Education)

I have used IPSEA in the past and they were very helpful when I thought I was going to be prosectued.

I have SLE & APS and Dr Huges agrees that my statemented daughter probably does, but still needs to see her.

Anyways good luck and which LEA are you with IPSEA will have an opinion on that.

much love & thoughts
clare

[Karen_L]

Hi Clare,

Thanks for your reply. My daughter hasn't been statemented as I didn't know anything about it, I always thought it was for kids with things like ADHD.

I have now applied to the LEA to have her statemented but am worried it may be to late, although IPSEA don't seem to think it is too late.

She is wanting to stay on at the 6th which is joined to the school, so fingers crossed they will statement her and she will get the help she needs.

I am pleased that your daughter is getting the help she needs and lets hope Dr Hughes will see her soon.

How long has she been ill for. My daughter Vikki started off with Glandular Fever at 11yrs and hasn't been well since. I was diagnosed with Fibromyalgia Sept last year but sometimes wonder if I could possible have lupus as I feel so ill, but I guess it is just the stress of having to fight for my daughters rights.

Vikki sees Dr Maria Cuadrado at St Thomas' she is very nice, and informative, we haven't had the privilege of meeting Dr Hughes yet. We're there on Thursday morning.

Thanks again for your reply

Love Karen xx :nurse:

[Karen_L]

sorry Clare, forgot to say it is Torfaen LEA, SE Wales. I am begining to wish we still lived in England.

Karen xx

[clare42]

:flowers:
Hi Karen,

You sound like you`re in safe hands with St Toms, My daughter has been poorly most of her life it is very stress related so we go through some bad hospital times but with the help of mainly painkillers we just manage the situation.

I have 3 children who all suffer with ill health to different degrees.

I don`t know much about your LEA, but I would suggest something in writing from St Toms or your G P or both to help support your Statement request.

Do you have a local parents support group attached to you LEA they were very useful to me.

much love & thoughts
clare :flowers:

[Clare.T]

Karen, thanks very much for making this very important post. I have been thinking about ways and means but for now please raise this at tomorrow's consultation.

You will need a detailed statement of Hatty's health status and how it affects her life, in all respects.
Maybe they can put you in touch with other young patients- perhaps they wuld allow you to put a notice up in the Waiting area. See what the possibilities might be

Karten - take care of your own health & get checked out.

Hatty's a fine young woman - congratulations

Bye bye for now

Clare

[Karen_L]

Hi Clare T and everyone else.

Just thought I would up date you so far. I am definitely learning.

I received my letter re child benefit increase, you know the norm, and for some reason decided to read the leaflet (I normally bin it) I got a fright when I read a child 15 + that is not in full-time education due to disability or ill health they should be notified. I rang them straight away and I am ok on that ground but they told me that she will be able to claim Incapacity Benefit at 16 even though she wants to go to sixthform.

I rang our local Job Centre Plus and when she is sixteen, claiming DLA, she is entitled to Incapacity benefit and maybe income support, even if living at home. She is allowed to study for up to 21 hours a week for As, Alevels and other qualifications.

This will not be helpful to everyone, if your on other means tested benefits then you need to be careful and seek advice first. As we are not on any other benefits, we don't even get disability tax credit, this will be a great help to my daughter.

I just thought that I would share this information with you, as I have said before, nobody tells you these things.

hope this helps

Karen xx :jump: :jump:

[Rosalea]

Hi
Thanks for sharing that, it is very interesting. My daughter is the same age and doing her GCSE's now too. What a stressfull time, and she finds it so hard to cope. You know what I mean I am sure. The problem we have is that we don't have a definate diagnosis, we are waiting to hear from blood tests taken two weeks ago. Hopefully we will have more news soon.
Did you also know that if you have a child with an illness, not just Lupus, and they have alot of time off school as a result, that you can apply to the examination board to have the illness taken into account when marking, it could bump her marks up sligtly. Also you can apply to the school to let your child have more time durring exams, and even help like a scribe or breaks. All these things help and have taken some of the pressure off my daughter. She was worried about all the writing she has to do durring her exams as she suffers from alot of wrist and finger joint pain, but we have a scribe in place now for when the time comes. The examination board need a letter from the consultant, outlining the problems your daughter has had. If you speak to the school they can help. It is not too late either and you do have a definate diagnosis.
Good luck to you both durring this trying time.
Fiona :flowers:

[StevieM]

Hi Karen and All,

Just wanted to say a huge thank you for this thread :)

As my daughter is only 10 and only just dx'd with SLE, I have taken notice of all of the points made here and as a result will get her statemented as soon as possible (something I only thought about in passing before).

We have already applied for extra time and help (a scribe) in examinations as she has previously been dx'd with JIA and dyslexia.

Hopefully this will save a lot of stress later on.

Thanks again for this information, I hope it helps others as well and that all of our children get all the support that they deserve.

Stevie

[birdie]

You can get DLA for a child even from a young age. I have a friend who's daughter little boy is disabled and she claims DLA for him, her son is only just turned a year old and have been getting DLA for him since he was first born. Also when he is 3 she can then claim the high rate mobility, it is surprising what we live and learn.



birdie

[Karen_L]

Hi all, thank you for your reply's :D

sorry I haven't been around much for a while but as you can imagine it is quite hectic here at the moment. ;)

Latest update is that the LEA have agreed to do an assessment on Vikki, they haven't agreed to statement her but at least we are now on the right road I hope!!! :rolleyes:

I didn't know about DLA for her until her tutor asked me if she was claiming it, and sure enough when I enquired about it the DLA know all about Lupus and didn't even ask her to take a medical. It also means that she can learn to drive on her 16th birthday and she now has a blue badge (she only uses it if she is in a flare, which tends to be more often than not at the moment). :)

Stevie, I do recommend that you go ahead and get your daughter statemented. Also if you apply for DLA for her she will then be covered by the DDA, don't look at it as claiming off her illness (that is how I felt at first) but look at it as protection for your daughter, people, schools, colleges, employees will not be able to discriminate against her if she is registered disabled, if she is ill and unable to attend school/college full-time they will find it difficult to through her out but will be required to help her to keep up with class/course work.

We're still hitting a brick wall as far as home tuition is concerned when she is sixteen as no-one will pay for it up to now. Vikki did right to the Welsh Assembley eduction minister, they replied back with the name of the person who has already said they don't know who it is we need to speak to. Hopefully, this will come from the LEA if/when they statement her.

Hope your all keeping well and your children aren't suffering too much at the moment.

Speak to you all soon

Karen :highfive:

[flutterbye]

Just wanted to wish you luck on the road, which I'm sure is long and tortorous to getting the help and assistance that Vikki deserves. You are a wonderful mum, and getting the right help will enable her to achieve her hopes and dreams. You are so right about protection your daughter, and getting the very best for her, which is what she so richly deserves. Take good care of all of yourselves. ((BIG HUGS))

[clare42]

:D
Hi Karen,
I don`t know if you remember me but my daughter has a statement, and as you have already gathered they are not easy to come by..you must have a parent link group attached to your LEA, and have you got a letter from you G P or Consultant yet?

An assessment is good, but there is still a little way to go yet, and home tution would be best inisisted on by your G P as he or she would be the one most in touch or so they think!

Anyways much luck, love & thoughts
clare :flowers:

[Karen_L]

Hi all, again thanks for your well wishes.

The assessment process has begun. Vikki was meant to have been seen today by the LEA's phsycologist, but he cancelled last minute as he is ill (great start)! Vikki also has a medical on Friday with a GP that we don't know, I just hope he has some knowledge of Lupus!!

Clare, thanks for the info of having a letter from our GP or consultant re hometuition, this I hadn't thought of so had better try and get onto that in the next day or two, although I did put the name of her consultant down in London on the form that the LEA asked for contacts name and addresses.

I have been feeling so ill myself lately that I am finding it difficult to muster up the energy for the fight, but I know I will manage it somehow. Sorry I haven't been on for quite a while.

I do hope your children are doing ok and are not in too much pain. Vikki has her GCSE's at the moment but thankfully seems quite well although gets very tired.

Hugs to you all

Love Karen xx