Making deaf children matter

Musings and blogs from a deaf campaigner

Stolen Futures campaign video and why the Government needs to step up

Posted by Ian Noon on February 11, 2013

Image courtesy of NDCS

Well, today was very exciting. The new campaign video for the National Deaf Children’s Society Stolen Futures campaign was released. It features actor Jim Carter (him off Downton Abbey, not the ex-peacenik-President) and my heroine Dame Evelyn Glennie (her banging the drums at the Olympics). And Jim then appeared on Lorraine this morning to tell everyone about the petition. Don’t tell anyone but I’ve always had a secret crush on Lorraine. It’s that husky Scottish voice. Rrrr.

Anyhow, the video is great. Please do watch and see for yourself. But it has a serious side. Vital services for deaf children are still being cut across the UK. Deaf children’s futures are still being stolen. And the Department for Education are still buck passing. The National Deaf Children’s Society still needs 100,000 signatures to force the Department to take responsibility.

“It’s a matter for local authorities,” the Department say.

“We’ve protected funding for vulnerable learners,” they protest.

“Go and have a go at the council bosses, light some firecrackers down the council building,” they haven’t quite said but it lies near the surface.

By April 2013, one in three local authorities will have cut the vital services that deaf children rely on. Is the Department for Education seriously expecting parents from across all those areas or charitable organisations like the National Deaf Children’s Society to be able to hold them all to account? For real?

It’s the Department for Education’s money. It’s their responsibility. They need to sort it.

Hence, the petition to get them to intervene. It’s building momentum. Over 28,500 so far. Share the video with everyone you know to help them see why this is so important. Get them to sign the petition. And then get them to share the video with everyone they know. And that way we can get the Department for Education to finally step up.

Deaf children deserve better than all this buck passing.

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Welfare cuts targeting deaf people?

Posted by Ian Noon on December 17, 2012

Well, it’s official. The Government thinks that deafness is just a ‘minor’ disability. A piffling little thing of no consequence or cost.

Last week, the Government confirmed the arrangements for the new Personal Independence Payment (PIP) benefit which is replacing Disability Living Allowance (DLA) for disabled people over 16 (DLA is safe for children – for now). In doing so, they confirmed that deaf people will be among those hardest hit. Here’s a National Deaf Children’s Society (NDCS) story on it.

The older lower rate for DLA is out which will hit a lot of deaf people.

And the criteria has been worded in such a word that basically you have to be a sign language user reliant on interpreters all the time to get even basic standard rate of PIP. Some estimates suggest around 90% of deaf people don’t use sign language as their main form of communication in the home.

To add insult to injury, the entire claim process is predicated on the basis that all disabled people can use the phone to request a form. Forget about such quaint things like webforms or email.

From next April over 600,000 disabled people will start to see their DLA cut or removed. That’s over half a million. And yet the announcements got hardly any coverage.

MPs and Lords will have to approve the changes at some point early in the new year. If you’re angry about the fact the Government doesn’t seem to understand deafness or think that it carries any significant extra costs, then get in touch with your MP and ask him or her to oppose the changes. If you get DLA now, explain to your MP what you use it for and what life would be like if you didn’t get it.

And don’t forget, if the Government thinks they can get away with this, deaf children and their families will be next.

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Deaf access fail at the Department for Work and Pensions

Posted by Ian Noon on August 10, 2012

Imagine someone telling a wheelchair user that the disabled toilets are just up the stairs. You’d think it bonkers. Well, the Department with overall responsibility on disability policy seem to be on well on their way to pulling a similar trick with deaf people.

There’s been lots of discussions about how the process for claiming the new Personal Independence Payments benefit will work in practice. In a nutshell, you have to make a pre-claim before you’re given a personalised form for your proper claim.

And how do you get a pre-claim form? Easy, you give the benefits team a call and they will do a short interview over the phone. And if you have problems using the phone? No worries, you’ll get a paper form to complete. And how do you get a paper form? You give the benefits team a call.

Frankly, it’s more than just a little disconcerting that the people looking after benefits for disabled people haven’t quite twigged that not every disabled person can use a telephone or have a textphone. So much for the new digital age and for the Government leading by example when it comes to access for disabled people… Am told that Department officials are working on trying to get an online form set up for the new PIP benefit… but it may not be ready in time when the new benefit launches in April next year.

They’d better get a move on. It’s not only just bonkers and ludicrous, but discriminatory.

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Social care safety nets for deaf children to be slashed?

Posted by Ian Noon on August 2, 2012

Most of the time, I can see the logic behind a government policy, even if I don’t personally agree with it. From time to time though, I come across proposals that are just manifestly completely bonkers, shoddy and ill-thought out. And that happened last week when I went to the campaign launch for Every Child in Need to hear more about proposals to weaken social care safety nets.

A bit of context first. We know from research that deaf children are pretty much invisible on the radar of social care services. We know also there’s a real lack of specialist expertise in deafness among the social work profession. And we know that sadly deaf children are more vulnerable to abuse and mental health difficulties.

So it’s pretty alarming that the Government have put forward proposals that would have the effect of making it harder for deaf children and other children in need to get the help they need. Even more alarmingly, the Government’s own impact assessment has identified that these proposals come with considerable risks for children in need. To think the Government initially planned not to bother with any consultation on these changes…

Key issues include:

* Doing away with the requirement for social care services to do an ‘initial’ assessment of children referred to them. If urgent help is needed, it will take longer for this to be identified and sorted.

* Doing away with any timescales for when a full ‘core’ assessment must be done by.

* Weakening the requirement to produce a plan of action at the end of the assessment.

The government’s rationale? Social workers should be freed from ‘bureaucracy’ and trusted to get on with their jobs. In an ideal world, this would be fine. But we live in a world instead where there are fewer social workers around, particularly any with any expertise in deafness. We also live in a world where local authorities are slashing budgets for social care services. And we also live in a world where parents of children in need continuously have to take councils to court to get the help their child needs. In this context, these safety nets are more important than ever. They’re essential.

The Every Child in Need website has lots of info about how you can support the campaign, including by signing their petition against the changes.

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Stop what you’re doing, sign a petition and help stop cuts to deaf children’s services

Posted by Ian Noon on July 26, 2012

My colleague Jenny caught me talking to myself the other day. I simply reminded her about the importance of internal communications in our office. And in the best spirit of internal communication, I am going to interview myself in this blog. I think I’m sitting comfortably, so here we go.

Hello! Do you have 5 minutes to sign a petition? 

God, not another pointless pontificating petition for socialist eco-warrior peaceniks to sign…

No, no, no – this is a petition to help save services for deaf children. 1 in 4 councils are cutting vital services for deaf children like Teachers of the Deaf, communication support workers, audiologists, social workers, speech and language therapists. NDCS’s Stolen Futures report sets out the full scale of cuts across England.

Yeah, yeah, all very sad, boo hoo, but cuts are taking place everywhere, innit?

Yeah, but are things really so bad that we have to start cutting help for deaf children, some of the most vulnerable children in society. To force deaf children to sit in classrooms missing what’s being said and falling further and further behind because their Teacher of the Deaf isn’t able to come in anymore? Is that how we think we should treat deaf children?

Er, yes, that’s bad but…

Hang on dear, there’s more. Imagine you’re a Mum who’s just found out that your child is deaf. You know nothing about deafness. 9 out of 10 parents don’t. You need someone to explain what deafness is, how you can teach your child to develop language and communication, and help you navigate all the other services out there. You need someone to give you hope.

Yeah, OK, it’s pretty immoral and something needs to be done, but a petition, yeah? Hardly going to change the world…

But if this petition gets 100,000 signatures, Parliament will hold a debate on the petition.

A debate? Snooze… I thought we were trying to stop the cuts? How is a debate going to change things?

A debate is still a big deal. Very few petitions hit the 100,000 mark so those that do get noticed. Government Ministers will have to explain themselves in front of everyone and answer some tough searching questions about what’s happening to deaf kids. Even if nothing happens immediately, it’s going to put them under huge amounts of pressure to do something. Plus, it will send a really strong signal that people care about deaf children. That people think the Government and councils should have some basic decency and not abandon deaf children.

But what’s the point of asking Westminster to do anything? The local councils are the bad guys right? Why can’t you just keep fighting them locally like you’ve been doing already? Take them to court and flog ’em? 

True, dat. It is the councils making cuts. But the Government holds the big purse strings. And they have real powers of direction over councils. There’s 152 councils in England. As much as they would like to and as much as they can try to, organisations like NDCS can’t fight the local cuts everywhere. Central Government can, should and needs to intervene.

100,000 signatures though? Impossible. Do you want me to raise the Titanic while I’m at it? 

Impossible? It’s said that everyone in the world is connected through six people. Around 500 people read my last blog last week. You all have friends, right? You also have colleagues, social groups that you’re involved in? If you sign it, then get 10 people to sign the petition and then they too get 10 people to sign it, we’re half way there already.

And I suppose when you get to  halfway other people will start to notice and say to themselves, actually yeah, this is a pretty appalling way to treat some of the most vulnerable children in society.

Absolutely. Aren’t you a clever clogs. And think what a signal it would send if the needs of deaf children reach the top of the agenda. Councils and Government would seriously think twice about ever doing anything to mess with people who care about deaf children and other disabled children.

Alright then, I’ll sign the bloody thing. Er, and how do I do that? 

Easy. Go to this website. Add your details. Click send. Then wait for an email to confirm you’re not some lunatic spambot and click on the link in the email. And you’re done. Then email everyone you know and get them all fired up. Sorted.

I’ll do my best. I’m still just 1 person though. Can I really make a difference?

Yes. If enough people take small steps to stand up to an injustice, big things can happen.

Deaf children are some of the most vulnerable children in society. If we don’t stand up for their rights and stop the cuts, then who will?

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What does the big special educational needs shake up mean for deaf children?

Posted by Ian Noon on July 23, 2012

The Department for Education are now full steam ahead with the biggest shake up of the special educational needs framework in England for 30 years. It certainly feels like 30 years since they announced their initial proposals but has actually only been less than 2 years. So what will the shake up mean for deaf children? Will it lead to better services and more choice for parents?

Well, despite a recent ‘Next steps’ update from the Department, some of the details are still somewhat hazy and will only become clear when the Department publishes their new laws in draft in September. Lots of the proposals are also still being tested by pilot pathfinders in 30-odd areas across England. The reforms are mega and it’ s impossible to try and summarise everything in one go. But I’ll have a go. Here’s a selection of 3 key questions and areas of uncertainty.

1) Education, Health and Care Plans

The statements are dead. Long live the Education, Health and Care plans. Yes, the statements – the legal entitlements to support that around 25% of deaf children currently have – is going to be broadened out and replaced with Education, Health and Care plans. The stated intention is to better ensure joined up working and prevent parents from having to give professionals the same information over and over again when their child is being assessed.

But will it do the job? Some key issues include:

* Existing legal protections won’t be lost (i.e. for education). But it’s not yet clear whether the plans will introduce any new legal protections (i.e. for health and social care). If it doesn’t, it kind of begs the question as to what the whole point of changing it is.

* Who will get one? When similar reforms have been done in other parts of the UK, the stated intention has been to reduce the number of children with statements. Will the same happen in England?

* Who’s going to do all these assessments? NDCS’s latest Save Services report, Stolen Futures, has found that 1 in 3 councils have cut education services since April 2011. Half of these cuts involve Teachers of the Deaf. Are the Government’s ambitions being thwarted by the cuts taking place on the ground?

* What will the plan look like? Will it have a proper focus on how deaf children should be doing and what support they need to get there? Or will it be a wiffly-waffly smiley face document of general platitudes? Some of the pathfinders seem to be going down the latter route…

2) Personal budgets

Parents who have a statement/plan will now get the chance to take control over the budget for their child’s services and buy in services from whoever they choose. The right to personal budgets will be an option and councils are expected to provide support to parents to help them navigate the system through what are sometimes known as ‘key workers’. Tricky issues here include:

* What will parents be able to buy with a personal budget?

* Choice for parents is great. But if parents chose not to buy from existing services, how much of a problem will that be?  Will existing council-run services have to wind down? Will personal budgets in effect end up actually reducing choice for other parents?

* The concept of personal budgets assumes a choice of services for parents. Yet does this really apply to educational services for deaf children? Can a parent pop down to Tesco to get a new Teacher of the Deaf?

3) The local offer

Every council will now have to say what’s available in their area for parents of children with special educational needs via a new ‘local offer’. The idea is that it will improve accountability and help parents get the information they need more readily. But…

* Will information be broken down by type of special educational need? The needs of a child with autism will be very different from that of a deaf child so how will councils produce something which is genuinely useful to all parents without cutting down the Amazon?

* Will there be a set format for a local offer? If not, how easy will parents find it to make comparisons between what’s in their own area and in neighbouring councils?

* Do parents really want a local offer? Or do they want a national offer? To be confident that the same basic services for deaf children will be available everywhere? I suspect the latter, but the Department has effectively already ruled this out.

This is barely scratching the surface and there are loads of other unanswered questions. NDCS’s response to the initial proposals sets out some of these other issues. Suffice to say, it would be a shame if the biggest, and badly needed, shake up of special educational needs reform doesn’t improve things for deaf children. So anyone with an interest in deaf education should start paying very close attention to the developing proposals in the coming months to make they do deliver for deaf children. Watch this space very closely.

If you’ve got any views on what the reforms will mean for deaf children, drop a line below – be good to hear from you.

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Top of the blogs countdown: a retrospective

Posted by Ian Noon on April 12, 2012

The other day, I realised that I’ve now written over 300 posts for this blog. Clearly, my ability to waffle knows no limit. So in a fit of nostalgia, I decided to have a look back and rummage through the back end of wordpress to see which of my posts have had the most views.

10) What an ill chicken tells us about access to university. This is a relatively new one and clocked up 1,000 hits. The ill chicken is now infamous. For those that have been on Mars, a deaf student in a documentary on deaf teens found herself without communication support because her notetaker’s chicken was “ill”. The blog looked at why the incident touched a nerve. Incidentally, the ill chicken has now also inspired a brilliant brand new blog called The Limping Chicken.

9) BBC online video content: where are the subtitles? The BBC were the first to have 100% subtitles on all its main programmes. Their online news videos are still largely inaccessible though. And nothing infuriates me more than when one of the online videos features a deaf person. This problem still keeps happening and is as unacceptable now as it was then.

8) Government to discourage teaching of sign language in primary schools? The previous Government effectively told NDCS that sign language had a lower status than other languages and put in place a policy that would discourage primary schools from teaching it if they wanted to. Happily, the policy never came into effect. Encouragingly, work is now in train to allow students to study a GCSE in sign language and government officials have indicated that students would be allowed to study this as a language on par with other languages.

7) Shameless: new deaf character on the telly. Ahh, Shameless! Louis Kissaun, a deaf young actor, popped up on Shameless for a few episodes a few years back. I went round telling everyone that his character was a great deaf role model before discovering that his character ends up bludgeoning his Dad to death. Nice. Louis went on to lend his support to NDCS at party conferences and was fantastic at lobbying as he was at acting.

6) David Cameron challenged on special educational needs and inclusion. A parent of a disabled child briefly lit up the general election campaign in 2010 by having a go at David. It made for entertaining viewing but also highlighted the Conservative party’s policies on inclusion in education and whether there is, as the Conservative party says, a bias towards inclusion.

5) Am I deaf or what? A brief and personal blog thinking aloud about how deaf people refer to themselves. Judging by the number of views, it resonated with a lot of people.

4) Bling but dodgy new Naida hearing aids. I love my Naida hearing aids. Unfortunately, I had a few teething problems. And I wasn’t alone. Happily, now all largely sorted for me and hopefully for everyone else.

3) Government turns back on deaf children. As soon as I published this blog – around 2 months ago – my hits went through the roof. I was pretty angry (and still am) about the current Government’s Welfare Reform Bill which will reduce benefits in the future for deaf and other disabled children. The Bill is now law. A related blog encouraged people to hold their MP to account if they voted to cut the benefit. I was really gratified to get emails from parents who had done just that.

2) No equality for disabled people in exams. This was a pretty technical issue. But in a nutshell, the previous Government passed legislation that would make it harder for deaf young people to have reasonable adjustments provided for them in exams and effectively loaded the system against them.

1) Deaf young people reach for the stars. One of the major perks of my job at NDCS is the opportunity to meet deaf young people and see what they have to say. A long long time ago, NDCS brought together a group of deaf young people to learn about media and campaigning. It was called “Reach for the Stars”. The young people were an inspiring bunch of guys keen to change the world. And a certain BBC Newsround presenter, with hearing loss himself, Ricky Boleto came along to offer some tips. Ricky is now running the London Marathon for NDCS and the young people are, I hope, changing the world, in their own little ways.

So what have we learnt from the past few years of blogging, apart from the fact that I can’t spot a typo staring me in the face? Well, a lot of you are angry about the various injustices faced by deaf children and keen to do something about it. You’re also keen to see positive deaf role models and examples of deaf people getting on with life and showing what they can achieve.

When I started doing the blog, there were hardly any other blogs around looking at issues facing deaf children. So it’s great to see lots of new blogs in this area since then; such as from Ni Gallant and Kids Audiologist.

As for me, I’ve now moved to a different role in NDCS, working on policy and research so my ability to waffle endlessly is more constrained than it used to be and, sadly, there won’t be as many blogs from me as they used to be. But my blogging days are far from over and I also contribute from time to the great new The Limping Chicken super blog. I also do a fair bit of tweeting where I can get away with it.

Nostalgia-fest over! I hope you’ve enjoyed all the blogs. Thanks for reading and for all your comments over the years.

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Rita Simons and informed choice

Posted by Ian Noon on March 21, 2012

Since everyone else is having their say on last night’s BBC documentary Rita Simons: my daughter, deafness and me I thought I would slip in my tuppence.

Firstly, that I thought the whole thing really demonstrated the importance of informed choices. Every deaf child is different. My sister is deaf and what worked for me didn’t work for her and vice versa. There’s no right “solution” for every deaf child. Parents of deaf children need access to expert, unbiased information to help them decide what’s going to work for their deaf child.

Despite this, throughout the whole programme, Rita was surrounded (intentionally or not) by people who were telling her she must do this or musn’t do that. The worst example was of the “Deaf community” telling Rita that cochlear implants were tantamount to abuse. I felt Rita showed considerable restraint; I would have probably chucked my pint over whoever said that, for their tactlessness and insensitivity towards a mother dealing with raw emotions.

(I put “Deaf community” in inverted commas because it wasn’t representative of the Deaf community I know or want to know)

She was also given information by professionals that was incorrect or misleading. I’m not an expert, but it’s not inevitable that children with Pendred Syndrome will lose all their residual hearing (I say this as someone with Pendred Syndrome myself). And not everyone with a cochlear implant is going to be nattering away on the phone. Cochlear implants are not a cure for deafness.

It was a shame that Rita didn’t get the opportunity to speak to more deaf young people with slightly less extreme views or to see how deaf children fare in mainstream settings. Whether this was by design or just the producers looking to make good telly, rather than balanced telly, I’m not sure. It was also a shame Rita also seemed oblivious to the information and resources available by the National Deaf Children’s Society whose reason d’etre is to ensure parents like Rita are exposed to all the facts and information they need. Their statement on the programme sets out the importance of informed choices far more eloquently than I ever could.

And more importantly it was a shame that other parents of deaf children might have been left with a skewed view on the options for their child. A real shame.

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Rubbish subtitles: an update

Posted by Ian Noon on March 13, 2012

In the past couple of weeks, I’ve found myself unexpectedly in the Daily Mail, the Metro, Digital Spy and the Sun. Sadly, it wasn’t due to scandal or celebrity mayhem. Instead, with my NDCS hat on, I had put my name to a quote lambasting ITV for their rubbish live subtitles for Dancing on Ice. Some of the worse examples included Philip Schofield suggesting the contestants would be “toasted to their limits.” Live subtitles are never perfect. These subtitles were appalling though and suggested a real lack of thought and prep by the production team. If live subtitles of reasonable quality can be done on the X Factor, it can be done on Dancing on Ice.

The only thing worse that rubbish live subtitles on live programmes are rubbish live subtitles on pre-recorded programmes. Which brings me to the Young Apprentice over on the BBC.

Last November, the BBC found itself on the deaf naughty step by showing the final of the Young Apprentice with live subtitles. Which would have been fine except it wasn’t a live programme, it was evidently filmed several months before. Charlie Swinbourne’s blog set out the case against the BBC.

I made a formal complaint to the BBC. I had a cursory reply back then referring to “technical problems”. I politely replied asking what exactly these technical problems were. Three months later, they finally got round to coming up with another excuse. The gist of their reply:

“The technical problems to which we refer is that many programmes are only completed close to transmission or have to be re-edited just before broadcast for countless possible reasons thus the reality is that sometimes there just isn’t time for our subtitlers to step in between when a programme has been finished or edited and the time of broadcast… We genuinely do our utmost to have full subtitles on absolutely all programmes because we are committed to providing a great service to all audiences and it is as disappointing for us as it is to you when we’re not able to for reasons beyond our direct control.”

On reading this, my face was full of such scorn as to put Margaret’s raised eyebrows and Nick’s pursed lips to shame. I wouldn’t mind a late reply, if it bothered to address my concerns properly.

Namely, how exactly is this outside of their direct control? Who commissions these programmes and sets out expectations for what the end product will look like? The BBC surely don’t accept any old rubbish. So why do they accept programmes that arrive too late for subtitles to be added?

And secondly, how exactly is completing programmes close to transmission and re-editing them at last minute a “technical problem.” It isn’t a technical problem. It’s poor planning. It’s some guy in the production team deciding not to leave enough time in the schedule to allow subtitles be ready in time. It’s some guy deciding that access for deaf people is a lesser priority.

I’ve sent my complaint straight back to the BBC and asked them to look again. With a new series of the Apprentice starting soon, I’m determined to toast the BBC complaints team to their limits until they deal with this properly.

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Why I spent my Sunday telling parents of deaf children all about my love life

Posted by Ian Noon on March 8, 2012

It was the question I had been dreading:

“Perhaps our visitors could tell us a bit about their experiences with girlfriends when they were younger?”

I was at a National Deaf Children’s Society Family Weekend to give a short talk about my own personal experiences growing up deaf. This one was for in Chingford, speaking to around 25 parents of deaf children.

I’ve done quite a few of these now. I go through some family photos and do my joke about not being the secret love child of Boris Johnson. But really my aim is two-fold: firstly, to show that deaf people can get through life and succeed and hopefully inspire parents to have high expectations of their own deaf children. And secondly, to outline some of the challenges that befell me in the hope that parents can learn from some of own experiences. 9 out of 10 deaf children are born to parents with no experience of deafness so these kind of weekends where families get practical information and the opportunity to meet other parents are pretty important, in my view.

I talk, for example, about how I always hated being patronised at school and how it made more determined to do well and go to Cambridge. I also talk about how I got more embarrassed about being deaf as I became a teenager, began to hate drawing attention to my deafness and the consequences this had when I had to start fending for myself at university. And so on. I normally finish by saying what I would do if I had a Tardis and could meet a younger version of myself. I would give him 3 pointers:

1) Accept that you’re deaf and be assertive about it. Make a fuss when you need to.
2) Information is power. Know what support is out there and what support you can get. You can’t make informed decisions about what you need otherwise.
3) Roll with it. Being deaf in a hearing world is a challenge. But in the future, you’ll see how the challenges can help you develop.

It’s always interesting to see what questions they come up with at the end. At this weekend, I was asked for my views on the future of the Deaf community, whether I was able to develop an emotional connection with music when listening to it and, yes, how successful my love life was as a deaf teen. It can sometimes be a little emotionally draining but I hope it’s all worthwhile and the parents enjoy it and walk away with something useful.

And in case you were wondering, the embarrassing question was answered with some quick references to schmoozing a girl by buying her chips in the park every other lunchtime, taking another girl to see Dumb and Dumber at the cinema on a date that, quite literally, put me off girls for life and, finally, how I got all my sex education from reading Cosmo. Well, they asked.

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