Should I appeal DLA decision

[Boatsnack3]

Dd age 12 has a rare genetic muscle condition she has been receiving DLA since she was 4 with renewals every 2 years.

2 years ago at renewal her care component was downgraded from middle to low. I did a mandatory reconsideration but got now where the reasoning seemed to be that any help she needed dealing with CPAP overnight she should be able to do it herself. I disagreed but didn't pursue to tribunal.

So we've just recently done a renewal and they have removed her mobility component altogether. They are saying that because she can walk 50m and has no learning disability she can manage unknown places alone. I did the mandatory reconsideration and pointed out that she was a fall risk, used a wheelchair for anything above 50m, can not self propel but they still maintain that my wheelchair using child is not entitled to mobility because she has no cognitive disability. I really don't understand.

The pandemic, shielding and bereavement this year have left my mental health in tatters and I really don't know if i have the energy to pursue this to tribunal but it really feels all kinds of wrong.

Sorry that is long

I'm sorry you're going through this. I feel you MUST appeal though. My DS has autism so not really comparable but he gets middle rate care as he needs 'frequent help/attention' throughout the day. I believe that low rate care is for DC who require 'an hour or less' attention either during the night or the day.
High rate is for those DC who need 'frequent attention' day and night.

What kind of evidence did you send in? I find it useful to keep a diary so the decision maker can see how long it takes us to do anything. An example I gave on another thread is something like:
'7.30am. I help DS clean his teeth. At 11, children would be expected to do this unaided. However due to DS's sensory issues and choking risk, I have to do this for him. I put toothpaste on brush, encourage him to try himself, we take a break as the feel of the brush makes him feel sick. This process takes 20mins twice a day.'

I go into very great detail. You need to show how much more help/support your DD needs at 12 verses a child of the same age without additional needs. I would imagine at 12, most DC are pretty much independent in terms of dressing, toileting, taking themselves to school etc.

I haven't used them but I believe the Citizens Advice can help with DLA appeals. I'm not sure how easy it will be to get an appointment at the moment though.

My concern for you is that if you don't appeal, they may try to remove the benefit entirely next time round.

Thank you I know I need to fight I'm just so over all of it I don't understand why they need to make it so difficult.

I did the diary etc she's only recently diagnosed so I sent consultant letters from genetics, respiratory and neurology both school and physiotherapy sent in statements.

The first decision claimed she had no plan in school which is not true but I must have forgot to include it first time. We are doing high school transition so her plan was being updated. They got a copy for the mandatory consideration.

I spoke to them on the phone I pointed out she cannot go anywhere alone I take her to school every day, I bring her home in her wheelchair everyday. I take her to meet her friends. Their logic seems to be that because she doesn't have a cognitive disability she can go places alone but she can't because she can't self propel her wheelchair, can't walk far 50m is the length of a swimming pool and she needs supervision to keep her from falling. They know all this, it was in the forms, I reiterated in our phone call, it was in the physio statement and in her school plan.

I feel like they are deliberately trying to goad me into giving up like I'm wrong and she could do all those things if I just pushed her harder didn't pander to her. Except she's a 12 year old girl who is desperate for her independence and I'd give my right arm for her to be able to do all the things her friends can do.

Sorry I'm ranting now