Being deaf and dealing with concentration fatigue

I went to a great conference today. It was riveting and I was hooked on pretty much every word. And then I got home and collapsed on the sofa. I’m not just tired, I’m shattered. I’ve had to turn my ears off to rest in silence and my eyes are burning. I’ve also had about 3 cups of tea just to write this paragraph.

Boo-hoo, so the Noon is tired, so what? True. People go through worse. But I do also think the fact that the impact of deafness doesn’t just manifest itself in communication is ever really that well understood. It’s about the energy involved in lipreading and being attentive all the day long. Processing and constructing meaning out of half-heard words and sentences. Making guesses and figuring out context. And then thinking of something intelligent to say in response to an invariably random question. It’s like doing jigsaws, Suduku and Scrabble all at the same time.

For deaf children and young people, especially, I don’t think this impact is as widely recognised as it should be. Advice to teachers on working with deaf children tends to talk far more about language and communication, rather than concentration fatigue.

And some deaf children and young people I meet haven’t been given the space to talk about what impact deafness has on them and to work out strategies to deal with it; like taking regular breaks and being honest to grown ups that they’re tired, without fear they’ll be labelled as lazy. When I was younger, I was a little embarrassed to be so tired all the time. I would force myself to go out and be busy and out there when really all I wanted to do was crawl under the sofa and nap for a hundred years. Nobody ever really told me that this was ‘OK’.

It follows though to when deaf young people grew up and become deaf professionals. It was a long while before I started to openly admit to colleagues that long or successive meetings are the enemy of me and that I would need extended breaks to be able to function later. And to get friends to realise that if I wasn’t saying very much in the pub, it’s probably cos I was too tired to think.

I guess what I’m trying to say is that deaf people can do anything and everything. We can change the world. But we might need a nap and a cuppa tea every once in a while, so don’t judge us.

Advertisements

Battle lost on welfare cuts for deaf people

The Department for Work and Pensions’ have succeeded in their plans to replace Disability Living Allowance with a new benefit called Personal Independence Payment (PIP) for disabled people over 16. The regulations were debated and voted through by Parliament around a month ago. And now many deaf people will lose out.

A response from the National Deaf Children’s Society is online and sets out their anger and disappointment.

I think what makes me most angry is the way the Government have gone about making this cut without being open about the consequences. Lots of members of the public and a few MPs and peers have raised concerns about the impact of these changes on deaf people. They have all been largely fobbed by the Department for Work and Pensions in several different insidious ways.

For example, the Department have been prone to engage in rhetoric about supporting those “most in need” when asked how deaf people will be affected.

Note the implication that that deafness isn’t that big a deal. If the Department think this, they should come out and say so. They’ve had ample opportunity.

And since when did it become OK for the Department for Work and Pensions to turn disability into some kind of big competition, pitting different groups of disabled people against each other to see who is ‘most’ disabled? I thought the just thing to do was to support everyone who needs help. It’s brazen and shameless divide and rule.

Another example of how the Department have batted away concerns is through refusing to identify how many deaf people will lose out. They say the Department can’t monitor the impact on deaf people. Everyone’s needs need to be looked at individually, they say. I find this curious because the Department can come up with a very specific figure of 608,000 people who will be affected by these changes. That’s 608,000 individuals who have already been judged to not be disabled enough. They can also breakdown figures in terms of who is on different rates of DLA. I rather suspect the Department can work out the differential impact but have made a conscious decision not to do so.

And finally, and probably what annoys me most, is some rather disingenuous use of definitions. For example, the dividing line between those deaf people who will and won’t get PIP is whether they have difficulties understanding basic or complex verbal information without communication support. So if you can’t understand basic information, you qualify. If you can understand basic but not complex you won’t.

When someone says ‘complex’ information, I assume they’re talking about the philosophy of Nietzsche or the budget for the European Commission. In fact, ‘complex’ anything that takes more than a sentence. This isn’t complex information at all – it’s everyday communication. And now deaf people who can understand yes or no but who struggle with everyday communication will lose out. So much for promoting personal independence.

The changes come into force from April. Reassessments for anyone who is currently claiming DLA will start from October – including deaf children who have just turned 16. You can expect a letter in the post. If you currently have a lifetime award, this isn’t going to make a difference, you will still undergo reassessment. In most cases, you will probably be called to a face to face assessment.

It now seems likely that the Department for Work and Pensions will turn their attention to DLA for children. Will the Department attempt to cut support to those children it deems to not disabled enough? If so, they’re going to have a hell of a fight on their hands.

Is this really the right time to push ahead with special educational needs reform?

Sad parliamentary geeks of the world, rejoice! The long-expected Children and Families Bill has now been published, setting out, amongst other, wide-ranging proposals for reform to the special educational needs framework. This is likely to result in significant changes to how deaf children and their families are supported and educated. If you’re unfamiliar with what the reforms mean, the National Deaf Children’s Society (NDCS) have produced a FAQ for parents of deaf children.

For much of this year, I’m going to be working on the Bill and briefing politicians what it might mean for deaf children and which bits of the Bill they should support, question, clarify or violently throw their Committee chairs against the wall and revolt against. Who knows, I might end up accidentally changing the law again.

In short, it’s going to be a big deal. So before we get into all of that, it’s worth asking a fairly fundamental question: is it sensible to go ahead with these proposals now?

The reason I ask is that the NDCS Stolen Futures campaign has already found that in the two years running up to April 2013, 1 in 3 councils have cut vital services for deaf children. So who is going to be left to implement these reforms?

The reforms are not cost-neutral. That much is clear from the ‘pathfinders’ who have been testing out the reforms. One Teacher of the Deaf working in one of the pathfinder areas told me that the work she had been doing on creating new ‘Education, Health and Care Plans’ involved lengthy meetings with parents and lots of work to co-ordinate with other professionals. This is not to say that the reforms are a bad idea. But it is to question whether they are sustainable in the long-run, without extra investment. However, the Department for Education have been clear that there is no new money on the table.

The big fear is that this reform actually causes so much upheaval that services get worse and deaf children’s education suffers. Parents of deaf children are already a little anxious about what this all means. In a NDCS survey, just 6% of parents of deaf children thought the proposals would mean that deaf children would get better support. 80% of parents who were familiar the reforms said they thought the real aim was to reduce spending. The Department clearly has some work to do to reassure parents.

As the Bill goes through Parliament, NDCS is going to be reinforcing this point: that unless the Department for Education ‘step up’ and intervene where local authorities are making cuts to services, their SEN reforms risk making a bad situation worse.

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

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.

Welfare cuts targeting deaf people?

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.

Deaf access fail at the Department for Work and Pensions

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.

Social care safety nets for deaf children to be slashed?

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.