Saturday, 1 February 2020

The USA Census and the 'Deaf'

The census is important for all with hearing loss as it allows identification of need and support, The UK made a mess of forcing through a question to identify deaf and cultural people, because they were non-specific about WHO they wanted to Identify. 

The result was huge negative for the sign users as prior to the census it was claimed at that time by sign charities over 50,000 deaf used sign language in the UK, the census results did not agree, it revealed less than 15,000 and even that was challenged because the question asked was not specific to daily usage or reliance just 'do you know sign language?' This meant hearing terps were allowed, family members, friends,  and learners to be included alongside actual deaf users and the question wide-open to misrepresentation. 

Of course, as the state was concerned it suggested there was no great demand for it, and charities suffered lower funding! Opponents of BSL suggested the 'Deaf' had deliberately 'loaded' the question on the census by inferring by default, 'deaf' and 'Deaf' were one and the same,  assured in the state's ignorance of the D/d thing, or the challenges made to it by various other hearing loss and deaf areas. 

It failed spectacularly because BSL is not a feature of HoH communication, and relative BSL activist areas were determined to make the point, so it was a real own goal for the UK BSL people.  The true test of sign language need is to identify reliant and daily users, many many attempts have been made by activists (By ATR itself),  and by charities dedicated to hearing loss to do this, and we all have failed, defeated by the UK's data protection act which bans any identification of the BSL user this way.  

The current situation is 'think of a number' double it etc, because nobody knows, so nobody can challenge. Currently, 12m have a hearing loss here and 150,000 use BSL are being claimed, we are in the realms of fantasy in many respects which supports areas that want funds, but the funding is not coming through too many have cried wolf too often.

Friday, 31 January 2020

Invisible no more?

Disability Sunflower Lanyard
Will the deaf wear them?

Disability sunflowers to be recognised at London Liverpool Street. From this week, passengers with hidden disabilities now have a discreet way to ask for extra help at London Liverpool Street railway station. Sunflower branded lanyards and ticket holders can be picked up from the reception on platform 10 at the station, and act as a subtle sign for staff that extra help may be required. 

Staff at London Liverpool Street station have been trained to understand what the sunflower stands for on the lanyards and ticket holders, and how they might be able to help disabled passengers with one. The sunflower lanyard and ticket holders were first launched on back in December at Manchester Piccadilly, London Euston, Liverpool Lime Street and Birmingham New Street The disability sunflowers initiative sis supported by Royal National Institute for the Blind (RNIB) and other charities including Alzheimer’s Society, 

The National Autistic Society and Action on Hearing Loss The types of hidden disabilities that are eligible for a sunflower lanyard include: autism and Asperger’s learning disabilities dementia mobility issues (e.g arthritis, MS, ME, chronic illness) visual or hearing impairments. What did the officials say? Ellie Burrows, Network Rail’s route director for Anglia, said: “Travelling by rail for passengers with additional needs can be a daunting experience and we’re always looking at ways our staff can make it easier for people. The sunflower symbol is the perfect way for passengers to discreetly identify themselves to our staff so we can do everything we can to make their journeys as smooth as possible.” 

Questions, Questions.

Image result for questions"Taking note of what grassroots in the UK is saying in regards to culture.  This question triggered responses that are worth a read. 

#1  A question for all my deaf family and friends... What does deaf culture mean to you? I want to talk to my deaf pupils about deaf culture but with advances in technology and medicine plus the closure of many deaf schools and more deaf children in mainstream schools, has deaf culture changed? If yes, what is deaf culture in 2020? I would love to know what it means to you. Thanks😊"

#2  "I doubt deaf culture has much meaning to deaf people as such about their daily lives, people tend to always associate sign with culture but it is more about communication these days and where sign actually can benefit the deaf, of course, advancements in alleviation has changed the access scene a lot, a deaf club or school, is not the only place we can go now."

#3  "We are mostly concerned with access, inclusion and support, learning about Milan in 1880 or America's Martha's Vineyard, seems an irrelevance apart from the fact that sign-based culture folded when the first bus out appeared to break the isolation, but deaf have ignored that point.  Little wonder there is a hard-core of deaf people who fear options."

#4   "Wales has no deaf schools, and the UK is losing more and more year on year, deaf clubs are virtually confined to city areas and non-extant anywhere else.  This suggests mainstreaming and more interaction for the deaf is succeeding in offering the deaf more choices, rather than harking on about the glorious deaf school past (Which deaf had no choice with anyway, and were closed because they failed to educate the deaf), we look to the future."

#5  "There is some frustration the cultural focus is downgrading the need and desire to go forward.  It's a luxury only the city deaf can afford really where 20% of all signers live.  Of course, those who most support the culture gig are the ones making money from it, via deaf 'arts', 'access advisors', or by  opening questionable 'cultural centres for the deaf' that are little more than expensive areas to learn BSL or a way for some deaf clubs to raise funds etc who include a smattering of deaf 'history', mostly cut and pasted from online USA sites,  but rather liberal with accuracy when defining what a signing culture actually is in UK terms.  Primarily it is a constant over-focus on the old deaf school/club systems and the 'good old days'."

#6  "At grass root level the struggle for more access and inclusion goes on regardless, we want to be like everyone else and don't see a future in some sort of Glorious isolation where the only people we know are other deaf and the ability to converse or be included with hearing people is viewed with reluctance or some sort of 'threat' (Mostly for whom it is too late anyway to adjust).  There are areas who see this as negative but we see inclusion as a real positive."

#7  Given less than point two per cent of everyone deaf has any deaf history, I fail to see where culture enters the argument, we need perspective, importantly, to stop playing at being martyrs and get with it."

Tuesday, 28 January 2020

Smart Energy

Smart Energy. Deaf audience film from Flare/ Flare Studio on Vimeo.

There seem a few views on this including claims these meters can be hacked into and your bills altered and utility companies using or selling your data.  Mostly it is so that utility companies don't have to employ meter readers any more and saving energy is simply you seeing how much you use than switching off yourself to save energy usage.  Which presumably you can do without a meter anyway? 69% of people are refusing to have them installed despite very heavy blanket adverts sent weekly to our homes.  What part of no don't they understand?  for those using 'Token'  and card systems to pay for power, there is no point in a smart meter because if you do not top them up your power is cut off!  Such users are acutely aware already on power savings.

Deaf Society collapse: Home closed.

ONE of Blackburn's most prominent office developments has been sold off after the collapse of the East Lancashire Deaf Society. 

King's Court, in King Street, Blackburn, has been sold off following the demise of the East Lancs Deaf SocietyKing's Court was one of the was key assets held by the Heaton Street-based charity, which collapsed last June. Administrators have now confirmed that the offices, which latterly had 13 tenants, had been sold to Properties North West, on behalf of Last Seconds Manchester. "The sale completed for £925,000. 

The purchaser also paid interest totalling £1,258," said administrator Robert Colman. "The funds from the sale will be forwarded to the joint administrators shortly." Charity Bank, one of the deaf society's main creditors, is receiving £826,507 following the sale, it has been confirmed, though they may still be owed another £191,000 as a result of the deaf society's demise. And £564,000 is still owed to an East Lancashire couple who hold a fixed charge over King's Court. 

 Another £25,645 has been collected in rent for King's Court offices, conference bookings and car parking space rent over the period, says an update report. Rent debts of £6,669 have also been collected from past tenants. Other debts of £75,045 were owed to the society and £21,170 has been recouped. Administrators have also been attempting to recover paperwork from the DWP - the charity's principal reason for failure was the withdrawal of Access to Work scheme contracts with the agency. 

But Mr Colman said that despite a number of requests, the DWP had not delivered the necessary records. He says that the agency is arguing there is no money owed to the charity - and in fact they intend to make a "substantial claim" against the deaf society as part of the proceedings. Mr Colman also said that a number of investigations were still ongoing concerning transactions revealed in the deaf society's bank statements. An attempt has been made, for instance, to access a bank account held for one of the charity's associated entities, Deaf Children North West, which Santander has refused. 

An estimated £71,563 would be outstanding from unpaid employee wages and holiday pay, according to the administrators, though no claim has yet been made from the Redundancy Payments Office, and unpaid pension contributions could total £4,818.

£30,000 taxi bill to attend deaf school.

"This hugely excessive waste of taxpayers’ money is an outrage," say the Moreton family - who want to move. Southwark Council spends more than £30,000 a year just on taxis to get a profoundly deaf girl to school in St Albans because her family cannot get council housing there. 

Mum-of-two, Sophie, lives in council housing in Bermondsey with her partner and children, nine-year-old Daisy and two-year-old Frazer. All four are profoundly deaf. Since last February, taxpayers have been forking out nearly £3,000 a month in taxi fares for Daisy to go to school, despite the family’s many efforts to move closer to St Alban's. 

The bill could also increase if no solution is found as Frazer is due to attend the school later this year. Because his school day would be at different times to Daisy’s, he too could need a taxi to take him to school. Frazer would attend the school until he is sixteen. The fed-up Moreton family have attempted to move council housing to St Alban's and save Southwark taxpayers’ money but to no avail. 

Officials at Southwark town hall are now locked in discussions with their counterparts in St Albans in a bid to reduce the hefty bill. Daisy struggled in mainstream education but is now flourishing at the specialist school Daughter Daisy first attended mainstream school in Greenwich, but was unhappy and fell far behind her peers, said Sophie. “She struggled with English and Maths, she didn’t understand the teachers,” the BSL user told the News. “She had very few friends, she felt stressed and moody.” 

The family applied for the specialist school 40 miles away when Daisy fell behind in mainstream education, with a reading level of someone half her age. Southwark initially refused the application, but it was overturned at a tribunal, and Daisy has been attending the school since February. “Her education in under a year has improved beyond belief,” said Sophie. “She has good friends and has become a confident happy and well-adjusted child.” But taxpayers shelling out so much on taxis for the daily 80-mile round trip, because they cannot move closer, simply defies common sense, say the family. 

The council’s offices on Tooley Street “There have been countless reasons and excuses to not move us to Hertfordshire council housing,” said Sophie. “I feel this hugely excessive waste of taxpayers’ money to transport my child to school is an outrage and that basic common sense appears to have been thrown out of the window. “I am utterly exhausted emotionally and have no idea of where to turn to, surely there has to be some reasonable outcome that would save Southwark a vast quantity of money a year by just working out a house exchange.” Southwark offered a council housing swap with St Albans, but it declined, according to Cllr Kieron Williams. 

“Firstly, I am really sorry for the inconvenience and stress that Ms Moreton and her children are faced with in this situation – it’s far from ideal, but I’m confident that we can collectively come up with more options to hopefully resolve the situation and I am more than happy to meet with Ms Moreton to discuss it further,” he said. “We have supported the Moreton family with their application for a mutual exchange to a home in St Albans, and have offered a reciprocal arrangement with St Albans Council, but unfortunately they have declined this option so far. 

“We have also offered the family the option of private rented accommodation in St Albans, but this would mean that they have a less secure and affordable home than one managed by the local authority. “We have written to St Albans Council again to ask that we meet or to discuss this and see if there are any further options open to this family and I sincerely hope we can find a more practical and less expensive solution very soon.” 

A St Albans spokesperson told the News that discussions were ongoing with Southwark Council and that it hoped to get the situation resolved soon.

Is sign language worth learning?

Image result for why sign?
The perennial question Hard of hearing keep asking themselves, but is the answer in the fact they are asking?

#1  I did level 1 last year (want to continue but couldn't find course during daytime locally); I just really enjoyed it and found it a great way of meeting people. I didn't do it because of the hearing loss but just because it was something I'd always wanted to do; it was coincidental that my hearing got a lot worse at the same time.

#2 I learnt it and found no use for it outside the home, the thing about HoH acquiring it, is they aren't aware that those who rely/live or thrive on it are apart from the social areas we inhabit, and deaf socialising is where it works. 

#3 That is because there is no support by systems to empower sign using people outside access TO those systems, so no social support for it.  Hard of hearing are also reluctant to attend or integrate into areas where it is the sole means of communication, those that do tend to sit apart even then.

#4  In learning sign you need to understand your social avenues will have to change and decide if you are prepared to change your entire social approaches, our dilemma is we don't, most of us want to access what we had before so a conflict of choice always exists. 

#5   There is a lack of proper and realistic advice. We should be told in real terms what reliance on sign language really involves.  Hard of hearing who look on it as a 'fun' thing or novelty, tend not to take it seriously, and rely on aids etc, but for the deaf it is a way of life they don't flit in and out of that communication approach, it is all and that's the issue with sign.

#6 As stated, the lack of vocabulary, lack of daily support for it and a reluctance to empower its usage in work or play, means most of us will not find a ready use for it. 12m with hearing loss, a few 1,000 who rely on 300 sign interpreters, the statistic speaks for itself. The fact there are no academic-based signs also mean the child with hearing loss can be limited in how far they can advance themselves given the world does not revolve around sign usage. 

#7  Sign has a very seductive approach and appeal born deaf readily embrace, they claim it is a natural means for the deaf on the basis they cannot hear anyway, and it is entirely visual, so it then replaces any desire or will to use that sign for access to non-deaf vocal environments. 

#8  So it is why they demand everyone else acquires it? they are unable to adapt themselves? I thought oral schools and lip-reading were options too?

#9  Worldwide there is no real attempt to create a deaf communication environment that bridges divides, activism and rights has made demands for everyone else to adapt but not them.  Many areas of the deaf feel understanding speech approaches is a form of discrimination.

#10  I think that needs a challenge if these deaf are ever to move outside their own closed areas. HoH have never really adapted to them either, there is some sort of 'standoff' or apathetic acceptance as I can see, where the more outgoing attempt to attend deaf clubs and other deaf areas,  but there is a very visible 'barrier' and like, tend to socialise with like.  HoH are tolerated visitors in most part.

#11  Hard of Hearing are hearing people waiting for the cure, so accepting the reality of deafness and all that goes with it, never really happens, sign language will never be a system they embrace.

#12  Why has nobody included lip-reading? 

#13  Probably because Hard of Hearing are desperate to accept it as a real option but finding it impossible to master?

#14 When you cut through the hype and waffle about sign language and view the realities, fewer and fewer deaf in the western world are following it blindly any more.  In the past it was assumed no other options existed, that is no longer the case.


Sunday, 26 January 2020

CCG's, CQC and the true result of UK care.

Image result for how many CCGs are there?ATR picked up this recently online from the UK's largest hearing loss charity (Who failed to mention it is selling off all their own care homes for the deaf).  It also fails to clarify devolved areas use differing health options too, so we should not read this as an 'UK-wide' thing.

"Vital hearing aid services across England could be at risk because an overwhelming majority of Clinical Commissioning Groups (CCGs), the local bodies responsible for commissioning and paying for NHS services, do not have the “bare minimum” information needed to be effective, according to new research conducted by charity Action on Hearing Loss. The report also highlights the vast disparities in hearing aid provision across England.

The report, launched today and entitled Valuing Audiology: NHS Hearing Aid Services in England, was compiled using data from Freedom of Information (FOI) requests the charity sent to all 195 CCGs in England. Of those who responded in full, just 1 in 20 (5%) knew how much they are spending on audiology, how many hearing aids they are fitting, and whether patients are satisfied with what they are receiving.

Dr. Roger Wicks said: “These results demonstrate an alarming lack of oversight and accountability on the part of CCGs, which are entrusted with providing healthcare local populations across England need.

“Without what seems to be the very fundamentals of evidence-based healthcare commissioning – the most obvious of which is rigorous data collection – 94.6% of CCGs are displaying a grave failure in basic budgetary and service management. Without data on how many people are being treated for hearing loss or on the quality of services, commissioning for audiology in many parts of England is being done through apparent guesswork, and we fear that under pressure CCGs may well continue to see hearing aid services as a soft target for cuts.”

The charity actively campaigns against cuts to NHS hearing aid provision, and has successfully persuaded 14 out of 15 CCGs not to go ahead with proposed restrictions. The new report, however, has identified three CCGs that are currently deliberately choosing to restrict access to hearing aids. North Staffordshire CCG, Dorset CCG and Cambridgeshire & Peterborough CCG all require a high threshold of hearing loss before hearing aids are provided, which means that hearing aids are not provided to all those who would benefit from them. This is contrary to NICE guidance which states that provision of hearing aids should be based on need, not threshold alone.

Roger continued: “Such a systemic lack of oversight on hearing aid services sadly seems to demonstrate that CCGs are still not taking hearing loss and its wider health implications seriously. Hearing loss is linked to a significantly increased risk of dementia, isolation and other mental health problems.

“Hearing aids are a lifeline for people who use them and are prohibitively expensive for the vast majority of people when bought privately. NHS hearing aids enable people with hearing loss to remain engaged with their families and their work-life, and it’s vital that they remain available. Until CCGs take steps to collect fundamentally important data on the services they are commissioning, these services remain exposed to the risk of cuts and rationing.”  The charity’s report lists a number of recommendations for CCGs, including at minimum collecting accurate data on audiology spend, access rates, number of hearing aid fittings, waiting times and outcome measures. It also calls on NHS England to stipulate that this data should be consistently collected and centrally published."

ATR:  England has nearly 200 CCG's all vying for the cheapest form of care they can get away with, Wales has 11, all attempting to provide localised provision for a national issue and acute shortage of funding. of the 12m alleged to have hearing loss e.g, 3 million who need hearing aids won't even wear them. 

The article is an emphasis on Hearing Aids because this charity is focused on hearing aids advice and the ultimate cure of hearing loss via research funding, but there are alternative monitoring bodies e.g. in Wales and other devolved regions provision varies there too.  Staffordshire has 3 times attempted to cease provision of TWO hearing aids insisting on just one, and even then only if the db readings were pretty dire, regardless if clinical advice suggests two are needed, and a lot earlier, in essence they were trying to focus provision to those too late to benefit from them and leaving others with loss to get worse before acting.   In part, it was attempting to persevere hearing in one ear by sacrificing the other also.

Reading recently of the scandals in Bury where deaf and HoH Mental Health patients were treated in appalling neglect and manner, it was explained that in fact, the CCG's/CQC had no authority to insist on the level of trained help mental health patients with hearing loss were entitled to, it was left to LA's struggling to find people, maximise cost-saving priorities, or simply left to private care providers themselves to sort out what they could find.  

E.G. no sign language interpreters in Bury could be used without Level 4 BSL but there was no such requirement to sign at all for their daily care help. Daycare welfare ignores sign use.  When the CQC and CCG's were asked about sufficiently trained deaf support they said it wasn't their area of concern. No BSL terp needed any skill IN mental Health support, primarily because no such specialist training exists, any skills picked up by terps were quickly lost via huge turnovers of interpreters and changes, continuity didn't exist, specialism is lost.  There are few if any specialist trained health communicators in the NHS as we can see just those with BSL skills alone whom everyone insists can do anything regardless of any special skills required, the random nature of BSL provision just adds to the issue, its a part-time and free-lance mess.

We found the CQC  and CCG's frustrating in that they mostly they have no real authority.desire or back up to monitor 70% of what they provide, [very much mirroring recent huge issues of prisoners released into the community without supervision, no staff to monitor], more cuts just take away more means of ensuring people's safety.  They are only seen to act AFTER situations get so bad someone else informs them.  

With regards to hearing loss, it is time those with it stopped assuming a CI or hearing aid or even a text or a bit of sign, addresses the real effects of it, PTSD applies to those with hearing loss too, their war is 24/7 every day of their lives.  The system of LA monitoring or care provision is a huge reliance on whoever runs that provision to keep records themselves, and then send them regularly to the relative SS depts but, little or NO checkups that is sent is true or even accurate, mostly because clamping down on poor care with those would mean they have to seek out more staff they cannot afford, and better care provision that costs more, so there is a 'blind eye' turned to most of it, the system moving to cover themselves.

It is one thing allocating provision but quite another it seems in ensuring it is fit for purpose or even monitored after.  Mostly they never bother or check-up to find out because they have cut social workers, also to limit criticism when the brown stuff hits the fan.   Apart from LINK (HearingLink) few services really exist for those with hearing loss problems and charity is moving away from care because they are now getting criticised. 

Provision is sketchy and of course expensive, so LA's are avoiding recommending more monitoring of their bad decision-making.  Areas see huge cuts to social services and it is not unusual those needing one can see 3 or 4 different every year as they go on 'leave' and never return.  Curiously my area has seen half a dozen heading for Canada?  Apart from wanting to follow Harry why are they heading there?