what to put on UK DLA form for 2 year old?

[purchasepad]

A friend asked me recently if I was going to apply for Disability Living Alowance for my 6 month old.
This has never crossed my mind mainly because we dont do anything differently to anyone else at the moment. I know in the future things will change, but I wonderd if anyone else had tried accessing DLA and the response,and if nystagmus is considered a disability?

[TomUK]

It is considered a disability, as I had the opportunity for a DSA (Disabled Student Allowance) when i went to University 2 years ago. However, from what I know of the DLA, it really depends if there is any specific equipment needed for your child.

[bibby]

Purchasepad

It's easy to be put off for applying as your child is so young. Are you not involved with any support services yet? Physio, Portage, Visual Impairment Services, etc?

I applied for DLA when my son was 13 months old because by then he was showing significant developmental delays (the same cannot be said of all children with nystagmus). By then he couldn't sit up, wasn't babbling, I had different people coming to see him (as mentioned above). He was awarded DLA at the high rate. His twin brother who also has nystagmus was awarded DLA at the middle rate as his problems aren't so severe. They do not need any special equipment but I still got DLA.

You probably need to wait a while before applying. You don't know what you are dealing with yet! As I say, every child with nystagmus is different. I do know of another mother with a 14 month old child with nystagmus that has been awarded DLA at the middle rate. That child has no developmental delay or special equipment that they have to use.

As I understand it, if your child has nystagmus they will almost certainly be classed as "visually impaired", i.e. their vision will never be fully corrected by wearing glasses or contact lenses. That in itself is considered a disability.

If you have any other questions, please don't hesitate to post. I'm no expert but I'll do my best to help!
Bibby

[purchasepad]

Hi Bibby,
thanks for the advice, We have had no other agency involvement other than the childrens hospital opthalmology dept. for his tests and results (end of may). to be honest I wouldnt know how to access other support services. Was this something that you had to seek out or were you referred to these agencies by the hospital?

[bibby]

Hi

I was referred initially to speech therapy by my health visitor due to my twins having feeding difficulties and not babbling. The speech therapist referred me to an occupational therapist as the boys were not holding things correctly and showed repetitive behaviour (i.e wouldn't hold spoons, would repeatedly spin items).

There was then a referral to the local Child Development Unit as my twins were obviously behind in many areas. From there I got referrals to Physio and Portage. It really depends on what problems you have. My twins just haven't developed the same as their 3 year old sister. Have you noticed any delay in development at all in your child?

I have also learn the hard way that the best way to get support is to fight for it. Ring your health visitor, tell them you are not happy if you do have problems with your childs development. They are usually happy to give referrals but you need to keep on top of them so to speak.

I am still frustrated not to have a diagnosis for my twins but they are doing well now they are in a special needs nursery - again, this is not needed for all children with nystagmus - it just depends on the individual. I don't want to paint a bleak picture. I have two happy healthy little boys but they are just a bit behind, need extra help and we don't know why yet!

regards
Bibby

[purchasepad]

Hi Bibby,
I went to see my health visitor when he was 5 months old to see if there was any delay in his development. She went through a long list & the only things he was unable to do were related to his vision. He is just about sitting up now which is nice as he gets very frustrated when he rolls onto his tummy! I'm due to go back in the next month just to check he is on track with the rest of his development. I have a 6 year gap between my almost 7year old twin girls & my little boy so I've forgotten whats meant to happen & when. My twins were late in developing in alot of areas but they are doing fine now. You must have your hands full with your 3 being so young!

[joanne]

Hi my daughter jess gets the middle rate and katie I haven't applied for only because I can't be bothered with the forms there is alot of writting to do my excuse is that it is lazyitus on my part lol!.

I applyed before knowing the full extent of all her disabilities and all the new medical problems.

My daughters visual impairment support teacher (VISTA) wrote on her forms that nystagmus is a disability that will affect her for the rest of her life, and that it won't simply clear up and dissapear and that she will be affected in one way or another throughout her life. There is alot of information of the web that helped me to fill her forms as to be honest I didn't know what to do and also in you go to your local DSS or CAB they will make an appiontment with you to help with the forms.

hopes this helps

[samhx]

Does anyone know how I can either register as partially sighted, blind or disabled as I do not know which if any I would be classified as, any websites, addresses (what I have to request from that address) or anywhere I could visit

Thanks in advance

[Sofie]

If you're in the UK:

You can get an assessment done by someone at the eye hospital (can't remember the proper name for that person!) and they will decide if you're partially sighted or blind/serverly partially sighted.

According to the SS310 form (bit of card you get from the council when the eye hospital pass on some forms) someone registered partially sighted or blind is considered disabled.

http://www.rnib.org.uk might be of some use to you. They have some information on what happens if and when you register.

[Sofie]

I tried applying for this for myself last year and got turned down because I have 'nothing wrong with me.' I mentionwd that I have problems with cooking (I'm over 16, so the forms are different for me than what they'd be for young children) and they decided that there should be no reason why I shouldn't be able to cook a meal for myself - yet I have less than 50% of my vision.

The CAB seem to think that they haven't even bothered to contact my GP or consultant at the eye infirmary. They were also surprised that I hadn't been for a medical before the DWP made their decision.

As I understand it, if your child has nystagmus they will almost certainly be classed as "visually impaired", i.e. their vision will never be fully corrected by wearing glasses or contact lenses. That in itself is considered a disability.

Unfortunately this does not automatically entitle someone to DLA. There appears to be alot of favouritism with the DWP giving people with certain conditions DLA and people with other (sometimes more serious) conditions nothing.

It appears to make no difference that I have been recently registered as partially sighted either.

It also does not appear to be related to equipment either - ideally there's alot of euipment I need (magnifying stuff mainly) and have been turned down. Yet my brother who is autistic has been awarded it.

[paul white]

Hi Sophie, you will know by now that the process of getting DLA is not straightforward and varies a great deal from one DWP area to another. As you are over 16yrs old and will be applying for the adult rate if you apply again you could get help with the form filling from Action for Blind People ( http://www.actionforblindpeople.org.uk ). If you need any more help please email me at info@nystagmusnet.org

[Sofie]

Thanks Paul. I am currently working with the CAB to see if they can help me appeal it.

[leanne31]

Hi,my daughter Sophie is 4 years old and she have been refused dla 4 times.Iam now waiting to go to tribunal.Sophie suffers with bad behaviour and is a very clumsy child.A recent eye test showed that even when sophies eyes dont wobble her vision is still not very good but.She is registered partially sighted but yet she's still fefused dla.This makes me mad when a neighbour of mine gets the highest rate because of depression.Do anyone have any advice of would i should say at the tribunal has iam all new to this.Thanks

[Sofie]

Leanne - do you have reports from any doctors/consultants? Also, with children, you need to prove they need more help than a child their age. Keeping a diary may help as well. If she goes to nursery/school, is there any teacher who could back up what you're saying?

http://www.actionforblindpeople.org.uk/ ... 54,SA.html may be of use to anyone applying for DLA. There's also one near the bottom about children.

Edit - In the end, I did get low rate care & mobility, but am now trying to get mid rate care, as I appear to meet all the things for that. (altough I'm being told I don't)

[leanne31]

Shes starting full time school in september and she has a visually impaired teacher.The school wrote to the dla and said she has no problems going to the toilet,but my argument was that the toilets are miniture toilets and they are on ground level so she feels safer using them toilets,but when shes at home she cant go to the toilet on her own because shes afraid to get off the toilet because she is unaware of how far the toilet is from the floor.