Pip for autism. We're on week 7 since MR was done. Anyone else had this?

Debb1119

Hi just done my 16 years olds MR for pip as he was diagnosed with ASD mild learning difficulties ,anxiety and now being assessed for ADHD . He was getting HRC LRM on DLA but has only scored 5 points this time.we had a 20 minute assessment on the phone where assessor did not even know what neurological assessments meant. When I received the decision they said because he attends college (rarely due to anxiety making him physically I’ll) shows he can learn, read complex information and make complex decisions with money as he has a bank account. Even though information I sent states he cannot make decisions independently . He is in a class with students who all have some form of disability with learning. I’ve done the MR and have stated where points should have been awarded such as mealtimes,he doesn’t acknowledge hunger,thirst or need for using toilet which has lead to other problems for him. He has to be encouraged to eat and drink use toilet and dress appropriately. He has sleep issues where he will be up pacing the floor for hours and cannot even decide what he would like to eat. He’s a great kid but doesn’t have the life of a boy his age,he doesn’t mix with people,he can’t get to college by himself, struggles to concentrate and is happy to be alone in a room if I let him.i have sent further information from family member who has tried to get him out on walks ,support worker and CAMHS who all say the same - he can’t make any independent decisions for himself .we are currently on week 7 since MR was done .has anybody else had this?

poppy123456

Hi,

If you have a read through many other threads here, you'll see that you're not the only person. Naturally on any internet forum you'll mostly only read the bad stories. Though the majority of people do claim PIP successfully, without any problems.

It's worth remembering that DLA and PIP are 2 completely different benefits, with totally different criteria. It's not awarded based on any diagnosis.

The most likely outcome of the MR is the decision will remain the same, so you'll likely be heading to Tribunal. Though we have had some members where the decision has changed in their favour at MR stage. Timescales for decisions are 2-12 weeks.

Debb1119

Thanks, yes when I called them they said they are currently running at about 8 weeks.i haven’t received call from decision maker yet but I have sent a stack of evidence( new) so may take them a while.

poppy123456

Debb1119 said:

i haven’t received call from decision maker yet

They don't always ring before making a decision so do be aware of that.

Debb1119

I was advised by his support worker to ask for DM to call me as his mental health care and support is ongoing ,but a little nervous to ask that they call me.

poppy123456

There's nothing more you can do really until a decision's been made on the MR. Once it's been made you will recieve the decision letter.

Em123

It is so sad that you have to fight so hard. I am autistic, and have similiar difficulties. My partner makes me a drink everyday because on several occasions I've been hospitalised due to dehydration (that led to kidney infections and sepsis). Same as food. I have no interception. 

Yet, my assessor seemed knowledged about autism and even said 'this is not an acceptable standard of living'. 

I really hope your son gets the support he needs. 

Debb1119

It’s really awful, autism is very complex and brings about so many other issues which impact not only mental health but physical health too. I feel sad for anybody facing these struggles everyday but also admire how people on the spectrum find ways of navigating the world.I’m hoping I actually get somebody who will listen this time.it’s very odd as my 26 year old has ASD and several disorders and she had no issue they were great but she had a face to face at home ,my son was over the phone so maybe this is why.

ChrisH90

Debb1119 said:

Hi just done my 16 years olds MR for pip as he was diagnosed with ASD mild learning difficulties ,anxiety and now being assessed for ADHD . He was getting HRC LRM on DLA but has only scored 5 points this time.we had a 20 minute assessment on the phone where assessor did not even know what neurological assessments meant. When I received the decision they said because he attends college (rarely due to anxiety making him physically I’ll) shows he can learn, read complex information and make complex decisions with money as he has a bank account. Even though information I sent states he cannot make decisions independently . He is in a class with students who all have some form of disability with learning. I’ve done the MR and have stated where points should have been awarded such as mealtimes,he doesn’t acknowledge hunger,thirst or need for using toilet which has lead to other problems for him. He has to be encouraged to eat and drink use toilet and dress appropriately. He has sleep issues where he will be up pacing the floor for hours and cannot even decide what he would like to eat. He’s a great kid but doesn’t have the life of a boy his age,he doesn’t mix with people,he can’t get to college by himself, struggles to concentrate and is happy to be alone in a room if I let him.i have sent further information from family member who has tried to get him out on walks ,support worker and CAMHS who all say the same - he can’t make any independent decisions for himself .we are currently on week 7 since MR was done .has anybody else had this?

I have Autism too, I had a telephone assessment for 30 minutes, Got a decicion with 0 points for anything, Sent a MR and got 2 points, Just awaiting for DWP to reply after a lodged a Tribunal appeal, They've got until 1st April.

Debb1119

It’s really disgusting how hidden disability is treated. I hope all goes well for you.