DLA - Advice Please...

sueh6

My eleven year old son has recently been diagnosed with MPGN - a rare form of kidney disease. Unfortunately the disease is chronic and can only be controlled before he needs dialysis etc. His main problems are:

High Blood Pressure which needs monitoring 2/4 times per day
9 different forms of medication (including steroids) to be taken daily/bi-daily/as and when
High cholesterol
Growth problems
Anaemia

He also has problems now as a result of the medications - skin irritations, severe headaches and nausea.

My question is this: Do you think he would be considered for DLA due to his condition? He has gone from a totally happy and independant boy who only needed minimum supervision to a lad who now needs so much care and reassurance.

Sue

imanan

you could claim carers allowance,go to www,welfarerights.net which is a minefield of information.

sueh6

What about the care element of DLA? Is it worth going for that for him?

Nikki

He should get DLA as your son needs alot more care than other 11 yr olds. When I found out about DLA I didn't think my son would get it for his condition, so I didn't bother applying - until I found out other children on my estate were getting it for the same condition, now he gets it too. You just need to show he needs alot more care than other children his age, which he obviously does.

Ted_Hutchinson

It would probably be worth your while spending £15 to download an up to date guide to claiming DLA for a child from Disability living allowance, attendance allowance , incapacity ... A similar but dated guide is available from Free guides to claiming disability living allowance, attendance ... and further advice (dated) is available from Benefitsnow Disability Living Allowance and Attendance Allowance self ...
Disability Living Allowance (DLA) for children under age 16 will tell you what it's worth but it will also enable you to claim Carer's Allowance

It is worth claiming CA at the same time as claiming DLA as this will enable a full backdating should the DLA claim initially fail (it often does first time round) and be won subsequently at appeal. You should submit the claim with the intention of going to appeal should the claim be refused initially.

Fran

From Citizens Advice website, Adviceguide:

"The Benefits Enquiry Line

The Department for Work and Pensions (DWP) run a telephone helpline giving information on benefits for sick and disabled people, their representatives and carers. This is called the Benefits Enquiry Line (BEL). In Northern Ireland, the Benefits Enquiry Line is run by the Social Security Agency. The helpline also offers help filling out claim forms over the phone when you are applying for Disability Living Allowance and Attendance Allowance.

You can contact the Benefits Enquiry Line on 0800 882200 (0800 220674 in Northern Ireland) or Minicom 0800 243355.]Disability Helpline"

LizzieT84

Do you or your husband work?

If you work you will get:
DLA care at Middle (possibly higher) rate.
DLA mobility at Low rate.

If you don't work but your husband does you can also get Carers Allowance.

If neither of you work you can get a disabled child premium and a carers premium on your income support claim.

My husband got DLA when he was around that age, his was based more on his eyesight although he had kidney problems and high blood pressure. The doctors decided that a BP of 212/110 was really not normal for an 11-year-old! His 'PB' is 310/160 which was monitor managed to record while was having an SVT a couple of years ago.

Ted_Hutchinson

Disability Living Allowance (DLA) for children under age 16
Carer's Allowance

filigree_2

LizzieT84 wrote:

Do you or your husband work?

If you work you will get:
DLA care at Middle (possibly higher) rate.
DLA mobility at Low rate.

If you don't work but your husband does you can also get Carers Allowance.

If neither of you work you can get a disabled child premium and a carers premium on your income support claim.

Maybe I misunderstood but there a couple of points to clarify: Even if no-one works and the family live on IS the disabled child is still entitled to DLA, plus the disability premium of IS. DLA is paid in the child's name and is not taken into account when means testing for Income Support.

The carer can potentially work part-time and earn up to £82 a week after certain deductions ie tax.

If the family are on a low wage and get Tax Credits they should tell the TC office that a child of the family gets DLA as there is a disability premium with TC.

yummymummy_2

DLA entitlement is not affected by how much income you have - it is a tax free social security benefit. Any child who needs more care than others their age can claim. The forms are a nightmare, but if you fill them in correctly using legally supported definitions then you stand a better chance of getting the award. Have a look at this site: https://www.bhas.org.uk, where you can down load a free, very good guide that will help you with each question. You need to describe what life is like on your worst day, believe me - there is no room for anything positive on that form.
Also, look at this article here: http://www.communitycare.co.uk/articles/article.asp?liarticleid=46856&liSectionID=22&sKeys=Vaux+what's+in+a+word&liParentID=26 (copy and paste this link) - I found this very useful when applying for my daughter.

nismum

Just a few things about applying for DLA. Usually the person has to have had the condition for six months but I would advise getting the form in as soon as possible. Firstly get someone from a citizens advice bureau, independent advice centre etc to complete the forms. Be prepared to give up at least 1 hour of your time to complete the forms. Also be prepared to be upset as you have to be brutally honest about how horrendous things can be. As the mum of a deaf child and a child with severe asthma I can tell you it can be distressing having to focus on negatives but it's the only way to get the money. Also photocopy your form and show it to your GP as it will be their word that counts, not the social worker, community nurse or teacher. However if you can get your child's consultant to write a letter supporting your claim and get something in writing from teacher, social worker, youth club leader etc this will all help. Do not expect anyone from DLA to contact a social worker, teacher etc I have never known this happen in 20 years working in disability services. Be prepared for a wait of up to 3-4 months before getting a decision, this is normal but keep phoning them to make sure your claim is not lost. In the event of being turned down for the benefit appeal immediately and again contact CAB etc for advice. Once your get the benefit if it is at middle care rate or above let tax credit people know as it should increase your allowance or contact Carers Allowance Branch at Castlecourt for a claim form. However be careful, if you are in receipt of some benefits such as Incapacity benefit you cannot get Carer's Allowance. Best of luck!!