For finding the term "registered disabled" annoying?

[BobbyBiscuits]

As background, I worked on behalf of the DWP for 15 years, and one project was developing the process/ forms etc for DLA to PIP transition. It was not a nice workplace but I really enjoyed speaking to the clients and getting their voices heard. (I was too junior for any decision making and simply interviewed clients in view to designing the forms etc)

After a MH breakdown, I found myself in the same position as my clients and now claim both PIP and ESA. I have MH which has now generated PH issues. My family are also on same/ blue badge etc.

For some reason recently this terminology has been annoying me...I hear a lot of people describing themselves as "registered disabled'. Why not just say 'disabled'?

This is a voluntary self reporting scheme that some councils offer. There is no such thing in any meaningful terms. Disability is a spectrum and how if affects each person is very different. I hate the benefit system and am not advocating it but get frustrated when people use this terminology as it's meaningless.

There is no register of disabled people, and it's really misleading. It can muddy the waters when people seek help.

I'm not blaming disabled people, but whoever started the terminology.

Any thoughts on this?

I nearly posted the exact same thing myself the other day, when reading another thread. I hate it when forms for places that don't know any better ask if you are registered disabled. I feel like asking them where I can find this so called register. I do have a disability, I claim PIP and have a blue badge, but have never seen this mythical register.

I've been waiting for a diagnosis since I was 5 months old. I'm now in my 30s. I've been told I may never get a diagnosis. My needs are just as valid as those who are diagnosed.

I've lost count of the amount of doctors I've seen and been told they have no idea.

There are registers for disability that are run by local authorities. Being Registered Disabled just means you are registered on one of these. The registers are all voluntary, you don't have to sign up if you don't want to.

I think most LA's have registers for those who are Blind, Deaf or partially Blind/Deaf. Not sure on other disabilities though - I know there is a Children's Disability Record Registration in my own area but don't think there is an adult one.

The registers are often used for providing concessions such as TV Licence Reduction, Leisure Centre Pass, Travel Pass, Blue Badge, providing equipment needed but they are mainly used for planning/providing local services in an area. You can still get these things without being registered but my partner who is Deaf says the registers make things much quicker/easier to deal with.

I often feel like screaming ‘But there’s no register of disabled people!!!’ (I know as per PP some local councils have limited registers for voluntary self-reporting.)

I think a lot of it is about acceptance of oneself and by society. If people say they are ‘registered disabled’ because they have some official proof (eg qualification for benefits) they’re not actually identifying or seeing themselves as disabled (people can and do live lives with quite severe disabilities but reject the label of disability). There’s a qualification in front of that: ‘I’m disabled according to those criteria but I don’t see/feel I’m disabled.’

The other side is that it ‘sounds official’ and therefore the people who use the phrase are justifying to others that they genuinely are disabled. Given social stigmas and persistent myths around PIP eligibility you can see why people might use the phrase to others.

In both scenarios, psychologically the decision to use ‘registered’ devolves the identification to ‘the officials’. ‘It’s not me, they have decided . . .’

The issue now is everyone, well nearly everyone it seems wants to claim a disability, I swear 50% of the people I know claim mental health issues - this over self reporting can mean the genuinely disabled don't get the help they need, don't get assistance or special treatment. Theme parks for instance have parents trying to qualify for fast passes for all kinds of things that quite frankly don't affect ability to queue so they have got really tough on criteria.

Most countries do have some sort of registration to allow you to access reasonable accommodations

My dd was on our councils register of children with a disability, there was an annual party, not sure what else it was for

I'm pretty sure DH had a card that he had to take to the job centre years ago that was 'proof' of disability. He used to refer to it as being registered disabled.

But that's also because disabilities can be invisible, and we don't all need assistance or special treatment
You could have a disability and run a marathon

It isn’t a status that is recorded anywhere. It’s not even used these days as there is no register of the disabled. For benefit purposes and to receive certain benefits your disability needs to affect you for a certain period of time, that’s all. You can declare yourself disabled if you have a condition that affects you in certain ways and you can use your benefit entitlement as proof of that disability but that is it. You can still be disabled and not receive benefits or be recorded anywhere on any system.

Disability isn’t a spectrum either. You have a disability or you don’t. Of course people’s disabilities are different and affect people differently but it’s not true to say it is a spectrum. There are a multitude of conditions that might make you disabled and some can be progressive but to say it is a spectrum is false.

In my head it means validation and acknowledgement by the authorities and able to go through the gatekeeper to the resources and whatnot available. A diagnosed disability type of thing.

Most of the time you need a diagnosis to access resource.

There used to be a register, it ended in mid or late 90s. My husband still has his card (and his disability.)

I assumed 'registered' just meant formally recognised and recorded on your medical records and you were in receipt of disability benefits.

I'm disabled and have used that term in the past. Never gave it a second thought.

I believe 'Registered disabled' is an out of date term referring back to when local authorities kept a register of people who were disabled in order to offer support/ AFAICT it's dating back to the 70s and is no longer in use apart from on some archaic leases, which when queried the council were happy to remove the phrase from.

Most local authorities hold a register under the Care Act. Dc are on it.

Totally agree. Also registered carer - no such thing!

There's not a centralised one but most councils have a register.

My dc are on it and I am also registered as a carer. The info is used to plan/fund services for disabled people in that locality.

I am ancient and years ago when I started work at 16 you had to be actually registered disabled with the LA you got given a card it was probably to do with the new employment laws that had come in so employers could register their disabled "quota" yes I'm that old !

I am not sure what the new registered disabled means does it mean claiming benefits or maybe a diagnosis? whatever it means we really should stop using the term because I don't think there is an actual register!

I'm one. I have a card. I'm also registered with the DWP as a carer/appointee.

I don't like the term either as I don't think the term exists now for physical disabilities
Years ago there was a green card scheme which counted as recognition for employment but was replaced by DDA and then the equality act in 2010
PIP/DLA is used as evidence nowadays

Is there any info anywhere about how many councils have one? No council anywhere I've ever lived had one. How do you know what every council in the UK does, to be able to say "most"?

Many carers are not 'registered' with the DWP. As soon as you earn above £139 per week you cannot claim carers allowance. I work part time and earn above but I spend every waking minute I am not in work caring (must be easily 50-60h per week on top). noone has people as me down as carer.

I am registered disabled.

I don't consider myself disabled on a day-to-day basis, and I don't look disabled, but I have moderate bilateral hearing loss.

The council does have a register, and I have received a "disabled" card through the post. I had to provide proof to register (a copy of my brown hearing aid book).

I did it because I may need some help/modifications in the future, and it is better to be on the list before I need it.

Because I worked in local government for 25 years. All the ones I worked in and liased with had one. I now know this from the other side of the fence as a service user. I'm not saying all do but ime most have.

What are the stats as to what percentage of councils have one, and what percentage don't?

Yes I know its incredibly unfair but many still claim carer's credit even if they can't claim the allowance.

Also there is no requirement to get CA in order to claim the carer's element of UC. Some people are able to do this.

None of the above should affect you being registered as a carer with your LA, local carers association or GP - all of which can provide support and advice.