A response to a HoH social media suggestion to share information to others who cannot attend consultations, lobby for support and access, and contribute to researches etc....
#1 "I think attending open days and consultations (Those who can make it AND get support to follow!), should share what they see with the rest of us to get a more comprehensive idea of how the systems are approaching support and access for UK HoH.
I see many areas that encourage a sign user to come and get support and next to none that encourage HoH or deafened to go. We aren't deemed as an area in need. E.G. I attended a DWP open day on PIP, (Which I came across by accident as they did not advertise it here), and despite suffering the indignity of being checked out first in case I complained 'or was an activist' (They aren't given seats or invited to attend), I managed to get a seat.
It is why 60% of them lost their benefits and failed to qualify under the new rules. I found I was the ONLY 'grass root' person there apart from a HoH lady who worked for an advice centre and appeared to have few problems hearing the speakers, the sole speech to text support was there because I insisted on it, not a single HoH OR Deaf group went, on what was the most important issue facing welfare claimants with hearing loss in recent times.
It's pretty clear the HoH 'community' is not bothering to turn up at all to many consultations. We know statistically only a small proportion of any area is, but the HoH input is near zero, in essence no viable representation is being seen, they leave things to charities who they also do not join or support, complete apathy rules this area.
Sadly, this means the ones who do turn up dictate most of the support directions and levels. Their 'size' fits us all. I was able to make my point direct about issues of access for us who don't rely on sign and indeed I was able to establish a direct email TO the DWP which was an exception to their rules. Any info we can share with each other has to be a good thing.
We aren't even using social media or YouTube to put points, about the only disabled sector that sees no point in it ! Instead we settle to talking amid ourselves, which adage-wise suggests is the prime route to madness ! 'Overviews' on the type of access you got also helps us all to demand the same. I suspect some areas are very well served and others have none at all. Bear in mind DEVOLVED areas of the UK e.g. Wales, Scotland, Ireland, where service provision is run SEPARATELY from how England is, no one size applies to all. Again what we do see as some sort of campaign is mooted as a 'national' one when in fact it isn't.
We had some hearing loss lobbies commuting to London for poor access issues created by their own devolved assemblies, and they just get referred back home. There seems complete ignorance over WHO is responsible FOR your access and support.
This also applies to CHARITIES a number of English 'national' charities do not have a set up in other areas at ALL so you cannot join them or benefit from the services they might provide. The big question is why do HoH and the deafened feel they do not NEED any help ? It can be the reason they won't lobby for it. Has technology replaced support for them ?"