Carer's Allowance claim and mum's DLA

Suzie G

Registered User
Jan 26, 2015
70
0
Has anybody else been in this situation and can offer advice? Mum was diagnosed 3 years ago. I'm her sole carer and struggling to afford the cost of petrol for a 100 mile round trip, every other day. I applied for Carer's Allowance but it was rejected because mum gets the 'wrong' kind of Disability Living Allowance. For many years she has received the 'mobility' allowance, as she was diagnosed with Fibromyalgia many years ago but not the 'care' allowance. I only discovered this yesterday - I always thought she'd been on the full allowance.
I spoke to somebody on the allowance team who told me to get form DLA 434 to claim for the 'care' allowance and then if that's awarded I'd be able to then reapply for Carer's allowance.

I'm happy to do this but worried about a couple of things. Is the DLA means tested? She has some savings (under £20,000)
Also what if they look at her case and decide she's not eligible for anything anymore and my interference means she loses it all together?- Her decline with Alzheimers recently has been awful and she's pretty much without capacity now, but when SS came, she was in glorious 'hostess' mode and the SW went away thinking mum is fine! What if the same happens with the DLA?
I've read about Attendance Allowance as well. If we applied for that, would she lose her mobility DLA? Can you get Attendance Allowance and DLA? I'm worried I'll do the wrong thing and we'll both be left worse off than before. I really need to get the Carer's allowance...I gave up my job to look after her and I'm struggling financially. I visit her every other day...how I will afford travelling every day as she deteriorates, I just don't know....
Any advice most welcome!
 

Kevinl

Registered User
Aug 24, 2013
6,050
0
Salford
She's 83. Thanks. I'll look at the link.
As Beate says DLA no longer exists and was for people under 65 only so you only need to be looking at Attendance Allowance. My wife used to get DLA and Mobility Allowance and as long as you got the middle rate of DLA or above Carers Allowance was payable. These days under 65's are covered by PIP's but the old system of AA is still used for people over 65.
I don't know who the "allowance team" are but what they've told you is out of date information.
None of these benefits are means tested so if your mum gets AA and you get CA it's all tax free but to get CA you have to be earning under £116pw after tax and careering for 35 hours a week but that includes time spend doing things for her like shopping on her behalf.
K
 

Beate

Registered User
May 21, 2014
12,179
0
London
Thing is, the same website says that

"If you already get DLA
If you were born before 8 April 1948, you’ll continue to get Disability Living Allowance (DLA) as long as you’re eligible for it.

If you were born on or after 8 April 1948, your DLA will end. You’ll get a letter telling you when that will happen. You’ll continue to get DLA until that date."

Suzie's mother was clearly born before 1948 so is keeping her DLA and could as advised, claim to get the care component added to the mobility component - I think that might turn out more money than AA, depending on which rate it is?
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Has anybody else been in this situation and can offer advice? Mum was diagnosed 3 years ago. I'm her sole carer and struggling to afford the cost of petrol for a 100 mile round trip, every other day. I applied for Carer's Allowance but it was rejected because mum gets the 'wrong' kind of Disability Living Allowance. For many years she has received the 'mobility' allowance, as she was diagnosed with Fibromyalgia many years ago but not the 'care' allowance. I only discovered this yesterday - I always thought she'd been on the full allowance.
I spoke to somebody on the allowance team who told me to get form DLA 434 to claim for the 'care' allowance and then if that's awarded I'd be able to then reapply for Carer's allowance.

I'm happy to do this but worried about a couple of things. Is the DLA means tested? She has some savings (under £20,000)
Also what if they look at her case and decide she's not eligible for anything anymore and my interference means she loses it all together?- Her decline with Alzheimers recently has been awful and she's pretty much without capacity now, but when SS came, she was in glorious 'hostess' mode and the SW went away thinking mum is fine! What if the same happens with the DLA?
I've read about Attendance Allowance as well. If we applied for that, would she lose her mobility DLA? Can you get Attendance Allowance and DLA? I'm worried I'll do the wrong thing and we'll both be left worse off than before. I really need to get the Carer's allowance...I gave up my job to look after her and I'm struggling financially. I visit her every other day...how I will afford travelling every day as she deteriorates, I just don't know....
Any advice most welcome!

Hi @Suzie G

DLA does still exist for older people like your mum and my dad and if your mum is already on it then she cannot have attendance allowance.

I am in exactly the same position as you. Dad 88 has been on DLA high rate mobility for many years but only the low part of the care component. I need him to be on the middle rate to be able to claim carers allowance.

I also have given up work to look after dad as working was becoming impossible. I rang the DLA offfice a week or so ago and explained that my dad has had a change of circumstances and they agreed to send me a change of circumstance form and they also made me listen to a statement that told me dad could be reassessed and lose everything. I really don't think there is any danger of that as dad is 88 and has had poor mobility and a blue badge for years and years and he will not get better. His change of circumstances is that he has declined over the last six months since his diagnosis and significantly over the last two weeks and now needs almost full time care. He has actually had dementia for 5 or 6 years but undiagnosed..

Up until a week or so ago I could get away with daily visits and going home at night. He has since stopped eating probably due to his dementia medication so for the moment I am staying with him overnight just to make sure he eats something.. I also need to be here first thing in the morning as he is now forgetting his medication.

I am sitting here watching TV with him while typing this.

Anyway I have the forms and I have started filling them in. There are a lot of questions and I am committed to returning them by the 19th march so I will find out after then. I have the memory nurse coming next week so I will let her know how he has been before I send them. I fully expect him to just be upgraded because neither his mobility or dementia are ever going to improve. I suppose they may want to reassess him and they are welcome to.

Keep in touch with me and I will keep you informed. I do know that DLA and carers allowance can be backdated.

It is not means tested.
 

Suzie G

Registered User
Jan 26, 2015
70
0
Yes, my impression from the Gov.uk website is that mum is old enough - 83 - to still get the DLA for mobility. Though it does appear contradictory at times. I'm hoping, like you Duggies-girl, that as her mobility is not improving and she now has the dementia, she will be upgraded to the middle rate for care.
I'm relieved to know it's not means-tested.
Kevinl, thank you. I have no earnings apart from a private pension which I've been told doesn't count when applying for the Carer's Allowance, so I should be ok, as long as mum gets upgraded to include the care component.
 

shirleywurly

New member
Mar 1, 2018
5
0
Thing is, the same website says that

"If you already get DLA
If you were born before 8 April 1948, you’ll continue to get Disability Living Allowance (DLA) as long as you’re eligible for it.

If you were born on or after 8 April 1948, your DLA will end. You’ll get a letter telling you when that will happen. You’ll continue to get DLA until that date."

Suzie's mother was clearly born before 1948 so is keeping her DLA and could as advised, claim to get the care component added to the mobility component - I think that might turn out more money than AA, depending on which rate it is?
My mum is 82 and for the last 2andhalf years has been getting the lower rate and I get carers allowance of 62.50 a week because of my dad's pensions she receives and her own pension we can't get any more help also she has about 5,000 in the bank they all interfere with her claims also I have no income except a minor pension from my partner who died 2 years ago but we do get help with rent and poll tax I am 58. Just can't understand how some people get all the help.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Yes, my impression from the Gov.uk website is that mum is old enough - 83 - to still get the DLA for mobility. Though it does appear contradictory at times. I'm hoping, like you Duggies-girl, that as her mobility is not improving and she now has the dementia, she will be upgraded to the middle rate for care.
I'm relieved to know it's not means-tested.
Kevinl, thank you. I have no earnings apart from a private pension which I've been told doesn't count when applying for the Carer's Allowance, so I should be ok, as long as mum gets upgraded to include the care component.

Hi again @Suzie G On the change of circumstance form you have the option of saying that you don't want the mobility part looked at only the care component.

I am not earning now and get nothing but getting carers allowance means that your stamp gets paid and that would be good. Like you I have been dithering for months over this because I don't want to be responsible for my dad losing all of his allowance but in reality I can't see that they would say that an 88 year old disabled man with advancing dementia no longer needs help. I am hoping that they will just contact the memory clinic or his GP and that will be the end of it.

Dad was stopped from driving six months ago after a few too many incidents and is now unable to go out alone so I have stressed that he would be unsafe and a danger to himself on the forms, this is all perfectly true as he is pretty helpless without me.
 

Suzie G

Registered User
Jan 26, 2015
70
0
Yes, the driving is an issue. Mum was stopped nearly 3 years ago after countless arguments with me about safety. I hope you're right, that in reality she's far worse, so therefore eligible.

On a slightly different note, I'm furious because I've just found out that mum had an assessment without my knowledge...she was diagnosed 3 years ago but hasn't had any kind of assessment since, we've just 'managed' - as you do. But she's deteriorated in the last few months so back in December I asked her GP for a referral to SS and also the mental health team/consultant she saw 3 years ago. The SS visit happened 2 weeks ago but yesterday I called the mental health team to ask how long we had to wait for mum to be seen. They told me it had already happened!! Two nurses went to her house on 16th February, without my knowledge and did the assessment! I wasn't at mum's that day as I had a hospital appointment to go to. How can this happen? I have POA. I'm my mum's only carer and I asked for the assessment in the first place...yet nobody even told me it was happening/had happened?!!
I'm currently waiting for a call back/explanation from them. Anybody else had this happen? When I speak to them, what approach should I take and am I wrong to think that I should actually be involved? I am so so angry..............
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Yes, the driving is an issue. Mum was stopped nearly 3 years ago after countless arguments with me about safety. I hope you're right, that in reality she's far worse, so therefore eligible.

On a slightly different note, I'm furious because I've just found out that mum had an assessment without my knowledge...she was diagnosed 3 years ago but hasn't had any kind of assessment since, we've just 'managed' - as you do. But she's deteriorated in the last few months so back in December I asked her GP for a referral to SS and also the mental health team/consultant she saw 3 years ago. The SS visit happened 2 weeks ago but yesterday I called the mental health team to ask how long we had to wait for mum to be seen. They told me it had already happened!! Two nurses went to her house on 16th February, without my knowledge and did the assessment! I wasn't at mum's that day as I had a hospital appointment to go to. How can this happen? I have POA. I'm my mum's only carer and I asked for the assessment in the first place...yet nobody even told me it was happening/had happened?!!
I'm currently waiting for a call back/explanation from them. Anybody else had this happen? When I speak to them, what approach should I take and am I wrong to think that I should actually be involved? I am so so angry..............


No I would not have been happy with that. I have taken my dad to every appointment since the car incident. His GP and the consultant at the memory clinic were both happy for me to go in with dad. When he was assessed at home by the memory clinic the nurse was happy for me to be there although I did have to disappear while he had his memory test and I can understand that as he would have been looking to me for help.

If he went on his own for any of these appointments or if any one asked him how is is he would say that he is fine and has no problems with anything. He even told the nurse that he goes out for a long walk everyday because he believes that he does. In fact if asked what he had for lunch today he would say he had a pie and a hard boiled egg. No he didn't, he had a trifle for breakfast and a teeny bit of salmon with a spoonful of mashed potato for dinner tonight and hopefully I can get a yoghurt down him a little bit later. He is no longer a responsible adult.

I would hope that any professional who deals with dementia patients should realise that often the patient has no idea that they have dementia and that they need to liase with the carer or family member that they live with.

I hope you get a good answer,
 

MaNaAk

Registered User
Jun 19, 2016
11,746
0
Essex
Has anybody else been in this situation and can offer advice? Mum was diagnosed 3 years ago. I'm her sole carer and struggling to afford the cost of petrol for a 100 mile round trip, every other day. I applied for Carer's Allowance but it was rejected because mum gets the 'wrong' kind of Disability Living Allowance. For many years she has received the 'mobility' allowance, as she was diagnosed with Fibromyalgia many years ago but not the 'care' allowance. I only discovered this yesterday - I always thought she'd been on the full allowance.
I spoke to somebody on the allowance team who told me to get form DLA 434 to claim for the 'care' allowance and then if that's awarded I'd be able to then reapply for Carer's allowance.

I'm happy to do this but worried about a couple of things. Is the DLA means tested? She has some savings (under £20,000)
Also what if they look at her case and decide she's not eligible for anything anymore and my interference means she loses it all together?- Her decline with Alzheimers recently has been awful and she's pretty much without capacity now, but when SS came, she was in glorious 'hostess' mode and the SW went away thinking mum is fine! What if the same happens with the DLA?
I've read about Attendance Allowance as well. If we applied for that, would she lose her mobility DLA? Can you get Attendance Allowance and DLA? I'm worried I'll do the wrong thing and we'll both be left worse off than before. I really need to get the Carer's allowance...I gave up my job to look after her and I'm struggling financially. I visit her every other day...how I will afford travelling every day as she deteriorates, I just don't know....

Dear Suzie,

I think you should go to your local CAB. The problem I have had with dad's Attendance Allowance is this:

In 2016 we made our original application but there was a problem because dad did not have a biometric residency permit. This is something that mum and dad should have sorted out years ago anyway dad now has this permit but so much time had passed that we had to make a second application. The second application was submitted and today a lady phoned up and asked for the date of the diagnosis!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Before everyone gets confused she meant when would I like this second application to go from because she had the letter of dad's original diagnosis so I gave her the date of his memory test of 2017! Any other person could have been completely stumped so it is just as well I was on the ball!

In the meantime dad has paid for his care with his savings otherwise it would have been very difficult to manage. I don't know how we will be able to keep our heads above water if this second application is rejected.

Good luck

MaNaAk
 

Suzie G

Registered User
Jan 26, 2015
70
0
No I would not have been happy with that. I have taken my dad to every appointment since the car incident. His GP and the consultant at the memory clinic were both happy for me to go in with dad. When he was assessed at home by the memory clinic the nurse was happy for me to be there although I did have to disappear while he had his memory test and I can understand that as he would have been looking to me for help.

If he went on his own for any of these appointments or if any one asked him how is is he would say that he is fine and has no problems with anything. He even told the nurse that he goes out for a long walk everyday because he believes that he does. In fact if asked what he had for lunch today he would say he had a pie and a hard boiled egg. No he didn't, he had a trifle for breakfast and a teeny bit of salmon with a spoonful of mashed potato for dinner tonight and hopefully I can get a yoghurt down him a little bit later. He is no longer a responsible adult.

I would hope that any professional who deals with dementia patients should realise that often the patient has no idea that they have dementia and that they need to liase with the carer or family member that they live with.

I hope you get a good answer,
 

Suzie G

Registered User
Jan 26, 2015
70
0
Well I left 6 messages with the relevant nurse on Friday trying to find out how the assessment went and why it happened without my knowledge, and despite promises, nobody called me back. I'll no doubt spend most of the day tomorrow - in between seeing mum - on the phone, trying to get answers.
The paper work came through for the DLA application. I can't believe how tricky it is and I'm terrified I'm going to get it wrong somehow. I don't want them to give mum the medium care component and take away the mobility component at the same time....
Duggies-girl, Did you go through the form with anyone? Did you get statements/assessment information from your dad's GP as well to support your claim for your dad? I wondered about speaking to somebody at Age Uk to see if they can go through it with me. The local Alzheimer's office closed down due to funding so I can't go there unfortunately. I expect somebody from here could advise me over the phone, but I'd rather see someone face to face with the form in front of me.
Prior to last summer I was a professional, sensible, intelligent person - a teacher of over 30 years and thought nothing could 'faze' me! The last few months have been a revelation, and not in a good way. This is the most stressful thing I've ever had to do, by a million miles!
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Well I left 6 messages with the relevant nurse on Friday trying to find out how the assessment went and why it happened without my knowledge, and despite promises, nobody called me back. I'll no doubt spend most of the day tomorrow - in between seeing mum - on the phone, trying to get answers.
The paper work came through for the DLA application. I can't believe how tricky it is and I'm terrified I'm going to get it wrong somehow. I don't want them to give mum the medium care component and take away the mobility component at the same time....
Duggies-girl, Did you go through the form with anyone? Did you get statements/assessment information from your dad's GP as well to support your claim for your dad? I wondered about speaking to somebody at Age Uk to see if they can go through it with me. The local Alzheimer's office closed down due to funding so I can't go there unfortunately. I expect somebody from here could advise me over the phone, but I'd rather see someone face to face with the form in front of me.
Prior to last summer I was a professional, sensible, intelligent person - a teacher of over 30 years and thought nothing could 'faze' me! The last few months have been a revelation, and not in a good way. This is the most stressful thing I've ever had to do, by a million miles!
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Yes the paper work is tricky and I have to have it back for 19th February. You should have a sheet that you can tick that says you only want the care component part looked at.

No I have not taken any advice or had any help although maybe I should have but I am usually ok with forms. I have listed all of dads appointments with his GP and the memory clinic so I fully expect them to check with the doctors who will confirm all that I have written. I also put down that dad had a memory test a few years ago but refused to go back and see the doctor.

I had to take dad to the doctor last week because he decided to stop eating and the memory clinic nurse is coming to see dad on Tuesday so I shall see that she is fully in the picture and I will be adding these appointments to the form.

I know we read these stories about people having their benefits removed but I can't see this happening with your mum and my dad because the progression must be expected and they are not going to get better. Some years ago I applied for attendance allowance for my mum and got turned down so I appealed it and it was granted and backdated. I remember she was so pleased when she found out she had had this small windfall and then she cried because she was too ill to enjoy it.

I only got the POA forms signed and witnessed last week and they went in the post on Friday. That was stressful enough and something that I have put off doing for nearly a year as I just did not want to do it. I feel I have taken the last of dads independence by doing that.

I bough him a CD to play today and he was thrilled to bits and we listened to it twice and then I had to stick plasters over all the buttons on his mini system except the on/off button and the play and stop buttons because he can't use it otherwise. It is so sad.
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
I found black electrical tape and silver duct tape sometimes work well on respectively colored backgrounds, to cover buttons or lights.

(I don't know if you have different names for these in the UK. Gaffer tape?)
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
I found black electrical tape and silver duct tape sometimes work well on respectively colored backgrounds, to cover buttons or lights.

(I don't know if you have different names for these in the UK. Gaffer tape?)

Yes duct tape is one. Sticking plasters are a bit of a stop gap until I find some silver. Actually I may have some in the car, I will look tomorrow. Thank you.
 

Suzie G

Registered User
Jan 26, 2015
70
0
Yes the paper work is tricky and I have to have it back for 19th February. You should have a sheet that you can tick that says you only want the care component part looked at.

No I have not taken any advice or had any help although maybe I should have but I am usually ok with forms. I have listed all of dads appointments with his GP and the memory clinic so I fully expect them to check with the doctors who will confirm all that I have written. I also put down that dad had a memory test a few years ago but refused to go back and see the doctor.

I had to take dad to the doctor last week because he decided to stop eating and the memory clinic nurse is coming to see dad on Tuesday so I shall see that she is fully in the picture and I will be adding these appointments to the form.

I know we read these stories about people having their benefits removed but I can't see this happening with your mum and my dad because the progression must be expected and they are not going to get better. Some years ago I applied for attendance allowance for my mum and got turned down so I appealed it and it was granted and backdated. I remember she was so pleased when she found out she had had this small windfall and then she cried because she was too ill to enjoy it.

I only got the POA forms signed and witnessed last week and they went in the post on Friday. That was stressful enough and something that I have put off doing for nearly a year as I just did not want to do it. I feel I have taken the last of dads independence by doing that.

I bough him a CD to play today and he was thrilled to bits and we listened to it twice and then I had to stick plasters over all the buttons on his mini system except the on/off button and the play and stop buttons because he can't use it otherwise. It is so sad.

I know how you feel about the POA and the issue of independence. I actually registered with the courts 3 years ago but only in the last few months have I taken over managing mum's finances etc, mainly because I felt I was taking away the tiny bit of independence she has left. It's a horrible decision to make.
I made progress today as I finally spoke to the mental health nurse and the social worker. They both seemed fully supportive of me putting in the DLA Care component application so I'll be able to include them on the form. Also mum's GP has said that they'll do all they can to support and provide info for the DWP when needed. I'll sit down with the form tomorrow and see how it goes. Also going to a Carer's Support meeting next week so it'll be good to meet others possibly in the same shoes. This TP forum and support groups like it are a lifeline for us aren't they!
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
I know how you feel about the POA and the issue of independence. I actually registered with the courts 3 years ago but only in the last few months have I taken over managing mum's finances etc, mainly because I felt I was taking away the tiny bit of independence she has left. It's a horrible decision to make.
I made progress today as I finally spoke to the mental health nurse and the social worker. They both seemed fully supportive of me putting in the DLA Care component application so I'll be able to include them on the form. Also mum's GP has said that they'll do all they can to support and provide info for the DWP when needed. I'll sit down with the form tomorrow and see how it goes. Also going to a Carer's Support meeting next week so it'll be good to meet others possibly in the same shoes. This TP forum and support groups like it are a lifeline for us aren't they!

Yes TP has certainly helped me and I pop in here everyday as often the posts of others are very helpful. I am very glad that you posted here as now I know I am not the only one in this position. Anyway I am glad you have made progress and have a bit of support with it. I am progressing and the nurse from the memory clinic visited dad this morning. She seems to think that his loss of appetite is part of the natural progression but she is going to speak to the doctor about his medication just in case and she will let me know.

She also told me to get the forms filled in and she would support my application. She also said that I should get an assessment from the Social services for dad and myself so all in all not a bad morning.

Dad however told her that he is fine, eats three good meals a day and can walk miles. I think she saw through him. He also told her that he will have fish and chips for dinner tonight. We will see.