Wales – Ask the Minister to make the right decision this summer!

Debbie Green, Policy & Campaigns Officer Wales

Debbie Thomas, Policy and Campaigns Officer Wales

The Minister for Lifelong Learning is making a big decision this summer – we need your help to persuade him to make

For example, the proposed law would allow families to appeal to tribunal if they were unhappy with a plan… but only for the parts provided by their school or local authority.

If support happens to be paid for by health, even if it is educational support like speech and language therapy, families would have complain to the NHS instead.

Another point is that health bodies would be able to withdraw educational support– even if it is written in a support plan.

Along with other third sector organisations, the National Deaf Children’s Society Cymru has lobbied for the proposed law to toughen up on health boards.

Assembly Members tasked with scrutinising the proposed new law agree with us and have recommended that the draft law be changed so that any support within a learner’s plan is backed up by a family’s right to take a case to tribunal.

Having to use two different complaints systems seems confusing. We want a single robust, consistent and accessible system.

But the Minister has said he is still sitting on the fence. He has stated that he will use the summer to come to a decision about whether or not to make this change to the draft law.

There’s just a couple of weeks to go before the Minister is due to make a decision, please help us urge the Minister to address this important issue before it’s too late.

Our online action means that you can do this in just a few clicks. It only takes a minute so please take action now!

What is the new law?

The Welsh Government’s Additional Learning Needs and Education Tribunal (Wales) Bill is currently working its way through the political passages at the Welsh Assembly. If it successfully passes and becomes law, it will change the way in which support for learners with additional needs is planned for.

The new law would affect deaf children, young people and their families all over Wales.

You can find out more information and access our Q&A on the proposed new law here.

Don’t underestimate the power of taking part in an e-action!

I’m guilty myself of looking at e-actions and wondering whether one more signature or one email from me will really make a difference. But it really does.

The National Deaf Children’s Society has a history of achieving good results through e-actions. Just last year, supporters in Wales took part in an e-action to send a template response to a Welsh Government consultation. As a result, our supporters made up a fabulous 28% of the total responses and the Government report that followed had a specific section outlining our concerns about how its proposals would affect deaf children.

We need your help again to shout out about this very important issue. It only takes a few clicks, so please take action now and then spread the word to your family and friends – the more people who take part the better!

Thank you.

General election 2017: Uninspected audiology services

Beccy Forrow Policy and Campaigns Officer

Beccy Forrow, Policy and Campaigns Adviser

Would you send your child to a school that hadn’t been inspected by Ofsted? Would you ride in a car that didn’t conform to industry safety standards? Would you eat in a restaurant that refused to take part in food hygiene inspections? All questions I’d answer no to.

But this is what is being allowed to happen with children’s audiology services in England. Only 15% of services have been inspected and achieved a high enough standard to become ‘accredited’. This leaves the majority of services uninspected – with deaf children, young people and their families having no idea whether they are attending a great service or one that is poor quality and unsafe.

Considering that an NHS report in 2014 found that one third of audiology services were failing to meet critical NHS quality standards, with no incentive to improve, it’s unlikely that many will now be providing a better service. This matters because hearing is critical to a child’s development of language and learning. Early diagnosis and support reduces the risk of delays in language, educational, social and emotional development. But this support needs to be consistently of good quality.

Earlier this year we created an audiology map so that parents could check if their local service had reached a high enough standard to be accredited. However, of 134 services, 40 have so far refused to take part in the inspection scheme at all. Many others have registered for the scheme but not moved closer to an inspection visit over the course of the last few years.

We’re calling on the next Government to make it compulsory for all children’s audiology services in England to take part in the inspections so that parents can be confident that they are fit for purpose. As the inspections cost money and can be time consuming to prepare for, it’s vital that the Government levels the playing field by making the inspections mandatory for all services. Audiology services for deaf children won’t get better on their own.

If any general election candidates come to your door, be sure to ask them about the quality of children’s audiology services. We’ve got some other questions you might like to ask them on our election web page.

NDCS does Disability History Month – Part 1

Brian

Brian Gale, Director of Policy and Campaigns

It’s UK Disability History Month so I thought I’d take the opportunity to outline key events in the history of the National Deaf Children’s Society. Over the past 75 years, tremendous progress has been made in attitudes towards deafness. However, in writing this blog I couldn’t help but think there is still a remarkable similarity between the issues faced by deaf children of the 20th Century and today.

On the 15th December 1944 a group of parents of deaf children met in London because they were concerned over the impact of the Education Act 1944 on their children’s education. They formed the Society of St John of Beverley (who became the patron saint of the “deaf and dumb” in the eleventh century)  whose aim was to “to further provision of full modern education for all deaf children in England as originally accorded to hearing children”.   After a short while it changed its name to the Deaf Children’s Society (DCS).

From these small beginnings developed the National Deaf Children’s Society, serving the UK as well as supporting deaf children in Asia, Africa and South America.  Below I have highlighted some key events in our history between 1944 and 1964.

1944

David Jackson identified as deaf at the age of 6 months. David said his mother tried to cure it by placing brown paper soaked in vinegar on his ears and serving him a diet of fish and carrots. David said “people would try anything in those days”.

1945

DCS establishes a Teacher of the Deaf training bursary scheme and starts a campaign for the training of as many teachers as possible.

1946

DCS proposes that public health services should conduct hearing tests on children at an early age to ensure early identification and support. This campaign was finally won in 2006 when new born hearing screening was fully rolled out across the UK.

DCS publishes its first information leaflet for parents “If your child is deaf” and sets up courses for parents

1947

DCS lobbies the Department for Education to ensure teachers receive a salary while training to be Teachers of the Deaf.

child-and-teacher

1948

DCS links with groups in Glasgow and the Midlands  and then one in the NW of England. Over the next 10 years more and more parent groups are established throughout the UK and establish links with the DCS.

DCS produces a circular on research suggesting a link between German measles in pregnant women and deafness in babies.

1949

The Minster for Education agrees to fund the training of Teachers of the Deaf. The Society’s first campaign win!

At this time around 450 deaf children in London were out of school and in need of a school place.

1950

DCS takes up the case of a young deaf girl who spent years in a mental health institution before she was found to be deaf and not “disturbed”. DCS challenged the way the Ministry of Health identified children with a “mental deficiency”. 

1951

DCS suggests the shortage of school places for deaf children could be alleviated by attaching a class for deaf children to a grammar school. The Friends School in Saffron Walden agreed to be a pilot making the concept of hearing impairment units (specialist classrooms for deaf children attached to mainstream schools) a reality.

Two children learning to use hearing aid equipment

1953

The DCS commences evening courses for parents lasting 6 weeks on topics including supporting deaf children to read and develop speech and language.

The first quarterly newsletter for parents was produced. It continues over 50 years later in the form of NDCS’s Families Magazine.

DCS make access to technical training a priority as a step to work. A pilot is established with Regent Street Polytechnic for 4 deaf students.

DCS presses the Ministry of Labour to give disability resettlement officers and youth employment officers full information on the employment of deaf young people.

1954

DCS offers holiday weeks for families in caravans which were very popular.

DCS is concerned about the absence of books for deaf children. It offered £50 to authors to write books and guaranteed the publisher £500 to ensure publication.

1955

Ann William’s daughter was diagnosed as being deaf. Ann said she was told by the consultant that her daughter would never amount to anything and would need to be sent away to a special school which Ann refused to do. She was not given any information on any communication method apart from speech so the family had no choice.

First debate on the Education of Deaf Children in the House of Commons opened by Michael Stewart, Labour MP for Fulham. 

1956

The quarterly newsletter transformed into a magazine for members called “Talk”. 12,000 copies are distributed to families.

The society offers £25 grants to parents to help them pay for their children’s hearing aids.

Deaf Children's Society Talk magazine

1958

Parent groups from all over the country meet and form the National Deaf Children’s Society (NDCS). They challenge the rigid approach to teaching methods for deaf children and reject the prevailing notion that a child who doesn’t speak is a failure: “A deaf child with no means of communication at all reflects a lack of flexibility of our education provision. Any method of teaching deaf children must ensure that each deaf child is given a means of communication” 

1959

NDCS establishes the Commonwealth Society to look into the welfare of deaf children outside the UK. Its first task was to raise funds.

1960

NDCS establishes the Deaf Children’s League of Service, proving volunteering opportunities for deaf children, encouraging them to be self-reliant and help others such as old people.

1963

NDCS responds to equipment requests and loans 38 Auditory Training Units to teachers to help children use their residual hearing. NDCS hoped the loans would convince local authorities to provide the equipment.

NDCS also provides 8 buses for use by local parent groups for deaf children’s excursions. By 1967 there were 17 buses on long term loan. It included one for the Manchester University Survey Team which was conducting research into the social adjustment of deaf teenagers.

250,000 copies of ‘What do you know about deafness’ were circulated as part of a deaf awareness campaign featured in newspapers, radio and TV.

NDCS bus

1964

NDCS’s campaign against the use of the term “deaf and dumb” meets with a measure of success when the Ministry of Health stops using the term “dumb”.

The Queen and Queen mother attend NDCS’s 20th birthday party (a reception at the Mansion House) joined by members of all 29 regional parent groups across the UK.

What happens next?

For what happened next read my blog on 1964 to 1984 to be published next week.

Cast a spell on the inspectors…

Sophia-James-cropped

Sophia James, Policy and Campaigns Officer, National Deaf Children’s Society

With the evenings darkening as winter creeps in, the inspectors aren’t wasting any time. Round two of the Ofsted and CQC inspections into special educational needs and disabilities (SEND) has kicked off faster than a Boxing Day sale (yes, the shops already have their Christmas stock in). Feeling the need for speed, the inspectors have visited five local areas in the first month.

If you’re lucky enough to live in Herefordshire, Bexley, Hartlepool, Plymouth or Surrey, you’ve already had a visit. We’re curious to know if you had any idea the inspections were taking place? Did you get involved? Give your feedback here.

Cast your spell

 If your area hasn’t been visited yet, you still have the chance to talk to inspectors about the support you get locally. All towns and cities will be inspected within the next five years, so don’t miss your opportunity to cast a spell. To find out more about what you need to do, check out The Buzz if you’re under 18 or have a look at our website.

 Trick or Treat

Reports from the first set of inspections were released over the summer holidays. Initially, in our view, the reports consisted of broad, general statements about SEND services across education, health and social care. Only four out of the seven reports released gave any specific mention of deafness, and even then, these were rarely detailed references to services.

That said, there are certainly some treats in these reports; they are the first ever focused reports into SEND services at a local level. In some reports, the inspectors have demonstrated they are listening to parents of deaf children and flagging up their concerns. Ofsted and the CQC are also making efforts to alert people to the fact these inspections are taking place on social media.

With Halloween fast approaching and reports soon to be released, it’s worth asking the question – will this next set of reports hold more tricks or treats for deaf children and young people?

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Getting it right from the start

ndcs_right_start

Today, we’re launching a new campaign in England, called Right from the Start.

NDCS - Ian Noon, Head of Policy and Research

Ian Noon, Head of Policy and Research

The campaign is celebrating 10 years of newborn hearing screening and how this simple and painless test has literally transformed the lives of thousands of deaf babies.

But whilst screening has made a big difference, there is still much that needs to be done. Once diagnosed as deaf, children and their families need high quality support to ensure they can develop the language and communication skills that are the foundations for success in later life.

Unfortunately, it’s clear that this support is not being provided consistently across the country. We know there’s a massive attainment gap in the early years foundation stage, where children are assessed among a range of early learning goals. We also regularly hear from parents that vital support, such as audiologists, Teachers of the Deaf, support with communication and so on is not being provided when it can have the most impact.

We’re calling on the Government, local authorities and health bodies to work together and make a commitment to ensure high quality support is in place as soon as a child is diagnosed as deaf. Our campaign report explains how the benefits of hearing screening at birth are being lost and what action is needed to ensure deaf children get the right support, right from the start.

Join us in getting it right from the start. We’re asking our campaigners to email our report to their MP and to ask them to take action.

There’s lot of other ways you can support the campaign. Find out more at www.ndcs.org.uk/rightfromthestart.

Latest SEN stats raise concerns about impact of SEN reform

NDCS - Ian Noon, Head of Policy and Research

Ian Noon, Head of Policy and Research

Last September, the Children and Families Act 2014 came into force, heralding big changes to how children with special educational needs (SEN) will be supported in education. The Department for Education made a big promise that no child would lose out of support as a result of these changes. One would therefore expect that the number of children getting legal statements of SEN or Education, Health and Care plans to have remained fairly stable over 2014. Instead though, new figures suggest a 6.8% drop in the number being issued over 2014. 20 local authorities have seen reductions of 30% or more.

Education, Health and Care (EHC) plans are replacing statements of special educational needs (SEN). They’re both legally binding documents which set out the support that a child with SEN may need to achieve their potential. EHC plans are intended to be an improvement on statements by ensuring more joined-up support. EHC plans are also available for children and young people up to the age of 25. All statements must be converted to EHC plans by April 2018.

The Department for Education suggest that the decline is partly due to ‘non-statutory’ EHC plans being introduced by pathfinders. These pathfinders are local authorities which volunteered to try out the changes in advance and were able to issue non-legal plans to see how they worked. We took a closer look at the stats to see if this was a potential explanation. But actually, when we stripped out the 31 local authority pathfinders, we found that there was still a 6.3% decline across all other local authorities.

One of NDCS’s biggest concerns from the start was that, whilst many of the changes might be sensible, it was a bad idea to introduce these changes at a time of widespread spending cuts and before a proper system had been introduced to hold local authorities to account for not following the law around SEN.

An NDCS survey of parents of deaf children published in 2013 showed widespread concern about the reforms, with only 6% believing that the changes would lead to better support and 72% thinking the real aim was to reduce spending.

Sadly, it now appears those concerns may be justified and, unless swift action is taken, promises to ensure no negative impact from these changes are at risk of being broken.

If you’re a parent of a deaf child looking for more information about the changes, the NDCS website has a range of factsheets and resources. There is also information for deaf young people on the NDCS Buzz website. For further support, parents can contact the National Deaf Children’s Society Freephone Helpline on 0808 800 8880 (voice and text), email helpline@ndcs.org.uk, or chat online at www.ndcs.org.uk/livechat

The NHS makes me feel like a drain on resources

Danielle Davies, Deaf Social Work Student

Danielle Davies, Deaf Social Work Student

I am 20 years old, a University student studying for my degree in Social Work. I am severely hard of hearing and have worn two hearing aids since birth. I am not blind to the harsh cuts the NHS has faced over the past few years and I understand we have been in a financial crisis under the previous coalition government. However, I have never in the past 20 years seen these cuts affect the service that I receive from the NHS, especially in audiology, the department I receive my hearing aid support from.

Not until now. I want to tell you about my experience a couple of weeks ago.

A few weeks ago, I made an appointment at my local audiology department at the hospital in my local town. This appointment was to have new moulds fitted for my ‘in the ear’ hearing aids. I went into the consultation room and I explained that I needed some new hearing aid moulds due to the current mould rubbing me severely. The moulds had also become discoloured and not very presentable. No hearing aid user likes to wear yellow looking moulds that look mouldy and unpleasant. It is natural that the moulds discolour and I usually stick it out long enough in till they are that bad they need changing.

The audiologist looked at the fit of the aids in my ear and the hearing aid itself. He stated that there was no need for new ones to be made as they fitted well and I had already had new moulds made a year ago. I explained that 6 months to a year seemed usual to come in for new hearing aid moulds. The audiologist stated that now I am in adult services replacements are every 2 years and not as regularly as they would have been in children’s services.

I did not know how else to respond to this but to sit in silence. I had never been told that was now eligible for new moulds every 2 years and not yearly. I was still confused as I had explained to the audiologist that the moulds had discoloured and rubbed me, regardless of how long ago I had new ones. The audiologist stated that on this one occasion he would fit new moulds.

After that the audiologist asked ‘do you know how much hearing aids moulds cost?’ to which I replied I didn’t know. The audiologist stated ‘they cost between £15 to £20 for the moulds and this is very expensive, the money comes out of adult services budgets’. What was going through my head was ‘are you trying to make me feel bad for coming to my appointment and asking for new moulds because my current ones have left me in discomfort’? I was made to feel like a drain on NHS resources and that I was using money unnecessarily, however this was not the case.

Following the moulds being made, the audiologist explained that I would be telephoned to come in and have an appointment to have them fitted. However, as I have fitted my own hearing aids for the past few years I asked if the moulds could be posted instead. The audiologist stated that we do not post them as ‘that costs money and it isn’t cheap for postage’. I pointed out that for years now I have had them sent in the post, but agreed I could come in and have them fitted if they weren’t going to post them. The audiologist stated we only post them to our university students, as I was a student living away, the audiologist agreed to post them on this occasion.

Again I felt like I had to justify myself to the audiologist.

It was also clear that my records weren’t read and my hearing loss understood, because when the moulds were being made and left to harden in my ear, the audiologist started to talk to me. For people who don’t know, to make new moulds the hearing aids have to be taken out for a few minutes. You wait patiently until the solution is hardened and ready to be taken out of the ear and you put your hearing aids back in.

As a professional in audiology I would expect the audiologist to have read my records and check my level of hearing before he tried to communicate with me verbally when I did not have my hearing aids in. I had no idea what was said but nodded and pretended I could hear him – I felt devalued.

I was born with a hearing loss due to sensorineural nerve damage but I have never experienced this feeling in the 20 years I have been using the services. I was not advocated and was alone on this visit. The reason I wanted to write my story was because I want people to understand that you should never feel like you are a burden, scrounger or drain on the NHS.

I will be qualified as a social worker in 12 months and will be paying taxes in which will help fund care that I need. I feel that no one who is hard of hearing or deaf should be spoken to about budgets, cuts and costs on their appointments. I walked away from that appointment wanting to use private services. I want to be proud of using NHS services – I have received extraordinary support for many years from some great audiologists and in writing this I do not want to undermine their amazing work and efforts.

Finally, I completely understand why postage services are being cut and why moulds need to be changed every 2 years and not more regularly. However, it is important that every deaf and hard of hearing patient has these changes explained. I walked out of that appointment feeling undeserving of new hearing aid moulds, I felt that I was using NHS budgets unnecessarily and I did not feel proud to be deaf.

It wasn’t in till I got home and explained this to my mother and older sister, who were appalled at my experience, that it made me want to make other people feel empowered. I want all audiologists to be approachable and provide advice in a manner of professionalism, to understand their patients hearing and to never let them walk out feeling devalued.

Please take a message from this…be proud of who you are and your disability, tell your story, because just writing this made me feel amazing to have spoken out.