DLA 'downgraded' after son has leg amputated

sarah.oxford

The title of my post says it all . My son age 17, has been on high rate care, low rate mobility for approx 10 years, as he is autistic (asperger's syndrome) and also has ODD (oppositional defiant disorder), which I have always managed with out any medication for him as we were refused help (unless I had a nervous breakdown!! - I didn't). Anyhow, I'm a single parent, one other younger son at home. We have better days and terrible ones and my son that gets DLA terrifies me when angry. He sees red, glazes over and throws things with no awareness of how much damage he could cause. It is expensive and most of our doors have holes kicked through or locks broken or wont shut. I mend things constantly, inc my car, as I can't afford a garage costs for work to be done. It is hard at best and how I am still going I do not know.
So April 2013 my elder son is diagnosed with rhabdomyosarcoma Alveolar, yes it just got worse, but I keep going (single handed of course). The cancer affects one child in every million (why does it have to be my son - what am I being punished for??), and he starts chemo then the time comes for the pre-op consultation (to remove the much shrunken tumor just above his ankle), and we get another shock in that he needs to lose his leg to have a chance to survive - he chooses to 'chop it off' which they do 4 days later. Then follows 2 weeks of twice a day driving to the hospital, staying for a few hours going home and trying to give time to my other son, before doing it all again - also elder son refused hospital food so it cost a bomb and car parking alone over 200 quid for the 2 weeks. Then follows 3 times a week physio, and appointment after appointment - all done by me, then 4 or 5 months more chemo - each chemo was 2 nights in hospital. Now he is on maintenance chemo for 6 more months - involves tablets at home, C.C. nurse doing bloods, hickman line still in weekly chemo in hospital through the line.
A few weeks ago I did the DLA form, (I get money direct as son would keep it all for his own extra food and ps4 games. The money is needed - vitally for the extra costs related to how his cos off ODD ASD etc), but that is not the problem, The concern is, after all the additional problems he has been awarded low rate mobility and downgraded care to miidle rate from high.
Any advice or thoughts would be massively appreciated. Even if you think I am being unreasonable - just say it, as I don't know what to do (should I try and manage, it is a struggle on the previous rate, now it is a bigger nightmare than ever).
Sorry for the long post -a lot to it, and I've missed out some of it!

mummyroysof3

You should appeal or whatever it's called. I'm sure the details of how to do it are in the letter. I'm sure someone with more knowledge will be along soon but I wish you and your children well in this difficult time

Indie_Kid

Have they explained why they downgraded the care?

You need to appeal. They will reconsider it first and if the result is the same, it's then sent to appeal.

Poppie68

Well blimey someone deserves a medal.....first of all have you spoken to a macmillian nurse? If not give them a call they are very good at helping people with DLA and benefit claims...sounds like you need some support as well they will also offer this. Do you have a scial worker?

skintmacflint

Did you get a letter or their statement of reasons explaining how they worked out their decision. And do you still ahve a copy of the letter explaining why they previously awarded him high rate care? Comparing them might give you an idea as to why they've lowered it.

Would be an idea as suggested to ask for help from your son's Macmillan nurse or any professional welfare advsior eg CAB, your council welfare/socail dept. they should be able to help you put your recosnideration request and appeal if necessary together.

Wsh you and your sons the very best, in what must be very difficult circumstances. .

pmlindyloo

Did you get any help completing the form?

It is very important to understand that high care DLA is awarded when the person needs substantial care during the day and care is also needed (or supervision) at night.

Did you take this into account when completing the form? If you didn't mention night care when you completed the form then this is probably the reason it has been downgraded to mid rate care.

This is why it is so important to get some support when completing the form.

In situations such as yours it does seem ridiculous that he has only been awarded mid rate care but that is the system.

The decision makers have little idea of what your life is like -I'm afraid it is a paper exercise based on descriptors and points scored. No night 'care' = no high rate.

Please get some help for an appeal.

Also please contact Macmillan Nurses. They may be able to help with travelling costs, for example.

rds60h

Sarah.Oxford What can I say ? That is an absolute disgrace !!
The only advice I can give you is the same as already given, put in a request for appeal ASAP and contact the MacMillan Nurses and ask for advice and an advocate.
An advocate would also take a lot of strain off you by helping with structuring your appeal and in tracking all correspondence and you can authorise them to be your point of contact.
Good Luck and keep us posted.