I am writing concerning your involvement with the Welsh Assembly Cross Party committee. Firstly, I have fond memories of the WCD from when Norman And Jackie Moore were still involved, I was a regular contributor to the old WCD magazine as well, and it's great to see young blood there, previously you needed to be at least 100 years old from the old deaf school and in permanent repeat mode.
I notice from the February 2019 minutes, one agenda question was about consultations (Yes I know February is a long time ago, but the assembly website puts up TWO pages to the committee and the one I first encountered was 'restricted' and apparently hadn't met for a year or so, and new people had taken over at the top etc, and they said to seek you out instead because Brexit or something was taking up their time.
It took a while to realise/locate who was involved doing what via the committee, (Perhaps an issue you can raise WITH the assembly website as they don't respond when I ask, or perhaps they don't know either). The meeting isn't accessible for us to view either. I thought initially the committee had no valid point, certainly few if any of my deaf or HoH peers knew it actually existed and apparently felt nothing concerning them went on there, it was some sort of 'charity/AM' pastime only attended when spare time permitted or nothing much else happening.
It is important I feel, to have grass-roots representation, I assume the committee was formulated to address and identify their issues anyway, although it appears the cross-party committee sees 'problems' in consulting anyone 'on the ground' as it were. What exactly IS that problem? There appears at least on social media many welsh deaf/HoH with a complaint or concern there. Nobody actual reads charity website Which is aimed at raising awareness of what they do not what we want, and appealing for the funding to carry on that way.
I was interested in the discussions to using technology to actually ASK grassroots for views and suggestions, given charity is in some sort of corporate and select cul-de-sac of its own and concerned with support rather than consulting people, and apart from a one or two abortive outings to deaf clubs consultation appeared pointless and inadequate, certainly not viable in identifying the vast need of over 300,000 in Wales with hearing loss.
There seemed an over-emphasis on BSL to the detriment of others with hearing loss and alternative means they use, (particularly in the Welsh NHS where 'Hard Of Hearing' have no support system extant, and contacts for such support as lip-reading and text aspects are non-extant in Wales either. Don't get me started on tuition classes for lip-reading or sign language, at colleges or the LEA or this letter will be longer than war and peace is. Suffice to say they are bloody pointless mainly.
One factual support example would be, near 50 Welsh BSL Interpreters are available for supporting that area, but less than 5 listed or trained professionals able to support the rest, so if you use text via palantype, speech to text, lip-read, or note-taking, best hire your own...which displays a huge gap of support that really should be a welsh scandal but they are only Hard of hearing.
If there ARE alternative contacts and systems in the NHS Trusts We don't know about them, or where they are, we are told contact a charity or 'phone a friend' instead of the welsh NHS treating us equally alongside hearing as patients, that this access hasn't occurred in 70 years, an entire generation should be, but isn't a scandal. Charity can't keep access afloat in the NHS on its own and it isn't desirable either.
Two health ministers over 5 YEARS at the Welsh assembly issued 'requests' to all major hospital trusts and on 3 occasions to ensure the deaf, sensory-impaired, and Hard of Hearing got rightful support, they received no confirmation from any of them it would happen because 'The Welsh Assembly doesn't provide the funding for us to do so..'
The committee could lobby the relevant ministers and ask them to explain why the NHS isn't being funded for our access? Which according to its own website, is a legal right anyway, via 5 Equality and human rights UK laws. Is this 'lip-service' (No pun intended), or someone taking the proverbial and patronising us?
As regards to the consultations, I appreciate it is very difficult, deaf and the Hard of Hearing never respond on any realistic level to a survey or a consultation process as they are currently run, so that suggests you need to alter the way you are approaching the consultation process, which seems an afterthought, created more in hope than expectation of any feedback.
It does seem the Assembly has assumed it is pointless trying and just leaving it to others e.g. charity, or the only identifiable hearing loss area, the BSL one. This suggests a national (Welsh) Drive, to make a more determined attempt to consult a priority, perhaps by sending requests to GP's social services etc to determine who requires help and what type they are requesting etc, there is no joined-up approach. The assumption is if you don't request support, then you don't need it, and this ignores the fact that support provision is a random and biased mess and unobtainable anyway.
We feel charity and AM's have given up trying, and the turnover of representation at the Assembly suggests we aren't worth the bother or time there either. You have to tell us where the tools are before we can use them. Perhaps if the Assembly empowered us with the financial support payment systems we would be creating demand and identifying need a lot easier. Areas like the DWP are disempowering us and LA's payments systems actually demanded I go blind before I can qualify, being deaf counting for nothing.
If the need is to be presented to the Assembly a sea-change seems a priority.
The deaf club consultation (the only ones identified), were a failure, and questionable, we know at one point with the AOHL and the BDA at Cardiff deaf clubs, those consulting outnumbered those they needed to consult, one meet attracted just 9 people. How such areas can then go back to the all-party committee and formulate any sort of plan on that basis is impossible to ratify. I think the feedback via charities is dodgy too. 9 became 20. Even 20 would be a non-starter.
The WCD to be fair, was the sole charity in South Wales that actually appeared to be inclusive and not EXclusive in areas they supported. Mrs Moore e.g. was a very strong advocate of raising issues concerning ALL with hearing loss e.g. not just an over-focus on the most visible, a strong lip-speaking advocate unafraid to challenge areas that wanted sign usage only (Like the BDA etc), or the RNID that wanted to focus on hard of hearing and ear wax, but only after getting rid of a BSL CEO there.
It was really unfortunate the WCD did not get the support it needed and the RNID were allowed into Wales to asset strip profitable support areas instead. Although the primary proposer of allowing the RNID into Wales later joined the BDA!
So much is now polarised in our areas, but the inclusive remit is still used to suggest something else. There is too much 'politics' and not enough focus on real issues of SUPPORT and the practicalities of being deaf or hard of hearing.
The increasing drive to use 'mentors/carers' with deaf e.g. has produced annoyance in welsh deaf clubs where charities openly 'tout' for business where they attend. I don't what that can be described as, as its like unsolicited 'cold calling'. It may be charity-driven or mentor-driven looking for more work whatever it is we don't want it. It's of concern most are friends/peers, and well known to 'clients' given privacy/neutrality is virtually non-extant as a result to anyone who has ever entered a deaf club, and qualifications seem rather too 'flexible' for real safety in our view. The trend to draft in complete amateurs, the well-meaning, or the untrained unemployed is not on for our sector.
I hope you can raise some of these issues at the next committee meeting (Whenever that is)?. At the same time ask can the committee approach the Assembly website, people, to sort out their ridiculous search options so we can actually identify what statistics actually exist? and vitally, to whom those statistics apply?
The site currently has 17 descriptives of hearing loss(there may be more I gave up looking), even without including those with other disablements, we also see the access and inclusion people stating that because they have included that ridiculous D/d descriptor, the search technology to discriminate who is deaf or isn't, or various modes they use, is no longer possible as a result of that 'cultural' recognition. It's like online when you search for 'deaf' and hard of hearing items, and get bombarded with American ASL adverts or soap carving instead.
Currently, it is impossible to use the Welsh assembly website as a meaningful source to gather data on 300,000 welsh with hearing loss. Where do they even GET that number? Charities are equally poor or biased and its 'think of a number' and dare anyone to prove differently, of course, THEY are the sole source of the data. If I was an AM I would be thinking this is pointless and we cannot get a real handle on anything.
I look forward to a basic response with accuracy, I can only suggest you don't use the Assembly as a source for that.