Anyone else on DLA with CONSTANTLY changing condition ?

parsons

dmg24 wrote: »

You should speak to our old friend andyandflo, they felt the same on this subject!

Oh? Are they on this site also?

Prinzessilein

I have Autistic Spectrum Disorder.

My condition varies friom day to day - or maybe from hour to hour!

I get Lower Rate DLA (both components) as an indefinite award as well as IB and IS.

Last summer I moved into social housing, which is being adapted for my needs. (Some work is already done, some I'm still waiting for) Without my benefits I would have to leave here and go into a home - which I really don't want!

I live in fear of being called for my medical (and I know it will come one day). Even being in the waiting room will be an ordeal. - I really don't function well with other people! I am unlikely to talk to the ATOS doctor/nurse/medical clerk - and worry that they will understand what it is to be an elective mute? Do I take my meds before I go and then sit like a zombie - and possibly not be able to sit as my muscles get so weak; or do I leave the meds and sob, shake and swear throughout the medical? If I swear at the ATOS people, will they understand or throw me out? (it's a form of Tourettes - I can be really offensive but it is never intentional)....I will not be going to the medical alone, my mum/carer will have to come with me and DIAL have already told me that if/when I ger called for the medical they want to come with me - and handle any necessary appeals.

Horacity

Reading your post made me glad I spent two days of migraine-inducing slog last week, answering the questions on the DLA reform consultation document. I hope enough people have done it to have some influence on the decisions that will be made.

11.An important part of the new process is likely to be a face-to-face discussion with a healthcare professional.
• What benefits or difficulties might this bring?

[My answer.] The discussion would almost certainly be longer than the applicant usually has with a doctor.
The healthcare professional should be able to spot the signs of illness outlined in my previous answer, as well as knowing what questions to ask to elicit extra information.
"Disabled people are experts in their own lives and information they provide will continue to
be vital".[Gathering evidence 29.] Only use healthcare professionals who agree with that statement.

The applicant may be nervous, tired and in pain. Years of inconclusive tests and feeling one is perceived as a malingerer [mainly 'invisible' conditions] can lead to defensiveness, overstatement or even apathy---'They won't believe me, so let's just get it over and go home'.

Having a friend or similar at the meeting would help, if this companion were allowed to take notes,
and occasionally prompt the applicant if s/he got confused or tired or had lapses of memory brought
on by the stress of the occasion.

• Are there any circumstances in which it may be inappropriate to require a face-to-face meeting with a healthcare professional – either in an individual’s
own home or another location?

[My answer.] It may be inappropriate for someone with mental health problems like severe anxiety, and people who find it stressful and fatiguing to have to speak a lot.
For someone with one of the fatiguing disabilities, attending the meeting may use up a week's energy.
[Save yourself up------meeting-------recovery time.]
Being cooped up in a hot stuffy waiting room while dreading a stressful encounter is a beastly
experience even for people who are well.

It should only be done at home on the request of the applicant. If a person is housebound through
disability or long-term sickness, they should be able to qualify for the awards anyway, through their own and supporting evidence, without having to jump through hoops/ prove they cannot do so.

They acknowledged receipt of my answers---I can only hope they did not file them in the bin.
Horacity.

GlasweJen

Prinzessilein wrote: »

I have Autistic Spectrum Disorder.

My condition varies friom day to day - or maybe from hour to hour!

I get Lower Rate DLA (both components) as an indefinite award as well as IB and IS.

Last summer I moved into social housing, which is being adapted for my needs. (Some work is already done, some I'm still waiting for) Without my benefits I would have to leave here and go into a home - which I really don't want!

Can I just ask what adaptions you're getting? My local SS team doesn't do adaptions for autistic adults unless there are other conditions but they wont even adapt for my other condition either.

Prinzessilein

GlasweJen wrote: »

Can I just ask what adaptions you're getting?.

Part of my ASD includes severe balance problems - I have Dyspraxia (which is often classed as being on the lower end of the Autistic Spectrum) as well as Asperger's and a number of other conditions.

My social worker supported my request for a ground-floor flat. The Housing Association then made a few changes for me - and then arranged a visit from occupational health to assess me for the shower. (The Housing Association will pay for it)

When I moved into my social housing, the electric meter was placed at a height of about 8 feet of the ground. This was lowered to an accessable height to enable me to have independance with reading/topping up the meter.

The bath is being removed and replaced by a walk-in shower.

I have a rail outside the front door and am waiting for a ramp to be put in place.(I struggle with steps).

Some people with Autism will not benefit from adaptions. Because my condition includes quite marked Dyspraxia, I have been given help to keep as much independance as possible.

Glaswejen - Autism, as you know, affects everyone differently. Have you asked for a referal to Occupational Health? Also, the Housing Association fund my adaptions - do you own your own place?

rogerblack

Dla2011 wrote: »

Hi
Sorry if long post, wanted to give as clear a picture of situation as I could.
<snip>
When my legs are bad I am stuck in bed, so as soon as my legs are a bit better I will try and get outside and walk. My thoughts are that now there seems to be such a crack down on DLA claims and CCTV and such I am always worried that I am going to get in trouble for walking. Even though when I filled out all the forms I attached a full letter stating that the condition is constantly changing and moves around the body.

DLA higher-rate-mobility does not require you to be unable to walk.
It requires you to be unable to walk without severe discomfort.


http://www.dwp.gov.uk/docs/dmgch61.pdf - for the full details, the test is 61276

See 61306 '. 'The test in DMG 61276 is of the person's ability to walk out of doors without severe discomfort, not the capacity to walk with severe discomfort. Any walking with severe discomfort is ignored'

I _strongly_ encourage anyone applying for a benefit to read the decision makers guide relevant to their benefit, and to fill in the forms accurately, with a description of your condition, but answering all of the 'tick boxes' they need to decide on your state.

For example, see the handy flowchart at 61329.

However, the most simple and reliable way of getting DLA higher-rate mobility is to chop your legs off above the ankles.

This also satisfies the 'self harm risk' test, so you're likely to get the care component too!

It's an easy way to sponge off the taxpayer

GlasweJen

Prinzessilein wrote: »

Part of my ASD includes severe balance problems - I have Dyspraxia (which is often classed as being on the lower end of the Autistic Spectrum) as well as Asperger's and a number of other conditions.

My social worker supported my request for a ground-floor flat. The Housing Association then made a few changes for me - and then arranged a visit from occupational health to assess me for the shower. (The Housing Association will pay for it)

When I moved into my social housing, the electric meter was placed at a height of about 8 feet of the ground. This was lowered to an accessable height to enable me to have independance with reading/topping up the meter.

The bath is being removed and replaced by a walk-in shower.

I have a rail outside the front door and am waiting for a ramp to be put in place.(I struggle with steps).

Some people with Autism will not benefit from adaptions. Because my condition includes quite marked Dyspraxia, I have been given help to keep as much independance as possible.

Glaswejen - Autism, as you know, affects everyone differently. Have you asked for a referal to Occupational Health? Also, the Housing Association fund my adaptions - do you own your own place?

Occupational health in our area is rubbish. Basically they agreed that I need adaptions and life without stairs or corners but then refused to fund anything because I work (oh no wait I lie, i got a flashing fire alarm).

I'm in a job that pays just over min wage so I'm having to save DLA for a fall alarm just now, that's the biggie. After that I'll start working on affording furniture that wont hurt on the way down and then it will be bluetooth hearing aids (if we can find ones that wont affect the pacemaker). It's an expensive business this being disabled rubbish.

stargazer59

Horacity wrote: »

To Sunnyone:-

Sorry if I did not express myself clearly. I was not referring to every and any genetic condition! I meant that the O.P. must have consulted doctors and specialists over the years who could give their opinions on the effect of his particular condition on his ability to walk and care for himself. I am aware that no specific illness [unless terminal] gives carte blanche for a DLA award, which is why I stressed the importance of giving a full detailed description of how one's health problems affect day-to-day living. As I said, it worked for me.

Over the years I have been to two different rheumatologists who thought on examination that I had an inflammatory condition, but were quick to change their tune when blood tests were negative. The second one mentioned erosions on my hand x-rays, but later [after blood tests] said there were no erosions. I know from my online research that it is possible to have a normal ESR despite inflammatory arthritis, and I have just asked to be referred to a rheumatologist in a different hospital, who was recommended by two of my friends. My own opinion is that I have psoriatic arthritis, and I have taken pictures of my red sausage fingers and toes and nasty pitted nails, just in case everything decides to look normal when I have my appointment. Hoping it will be 3rd time lucky---I'd cross my fingers if they weren't so stiff.

I too have this horrible disease. I took pictures on my phone but a full talk and examination with a Rheumy and straight away he said she was organising meds , x rays and OT consultation.She didnt need to see the

pic!

This is after a year ago another Rheumy saying i only have stiff hips and
to get on with it, in 2 weeks im having the first of my hip replacements as in one year this evil disease has destroyed my hip joints and i trying the same with other joints!

Good luck with your Rheumy appointment:)

Hear-Hear

GlasweJen

Since August 2010, bluetooth-enabled hearing aids have become available via the NHS. If your PCT tends to use Siemens or Oticon, these hearing aids are now standard issue. So, no need to save up for them. You simply need to request the upgrade, which you will get if your hearing aids are more than 3 or 4 years old.

If your aids are less than 3/4 years old, then you will have to prove that bluetooth connectivity is essential to you. That is rather hard to do, as bluetooth is still considered an accessory whereas hearingh aids are regarded as essential (for those with hearing loss).

Mrs_Arcanum

Prinzessilein wrote: »

I have Autistic Spectrum Disorder.

My condition varies friom day to day - or maybe from hour to hour!

I get Lower Rate DLA (both components) as an indefinite award as well as IB and IS.

Last summer I moved into social housing, which is being adapted for my needs. (Some work is already done, some I'm still waiting for) Without my benefits I would have to leave here and go into a home - which I really don't want!

I live in fear of being called for my medical (and I know it will come one day). Even being in the waiting room will be an ordeal. - I really don't function well with other people! I am unlikely to talk to the ATOS doctor/nurse/medical clerk - and worry that they will understand what it is to be an elective mute? Do I take my meds before I go and then sit like a zombie - and possibly not be able to sit as my muscles get so weak; or do I leave the meds and sob, shake and swear throughout the medical? If I swear at the ATOS people, will they understand or throw me out? (it's a form of Tourettes - I can be really offensive but it is never intentional)....I will not be going to the medical alone, my mum/carer will have to come with me and DIAL have already told me that if/when I ger called for the medical they want to come with me - and handle any necessary appeals.

So glad you are being helped towards independence. The whole tarring everyone with the same brush is so ridiculous when such things cause untold worry & stress particularly to the most vulnerable.