My PIP story

KayelyHello. My name is Kayley MacGregor, I am 21 years old. I have been deaf all my life and have worn two hearing aids since I was 4. I live in the very North of Scotland in a small town called Wick, I am a qualified Early Years Practitioner and work in a playgroup. It can be hard sometimes because of the noise and young children’s speech isn’t always the best, but I love my job!

I have been doing some research over the past few years about disability benefits, but I couldn’t really see much for deaf people. In 2010, I applied for DLA but was told because I didn’t need any help doing things for myself I wasn’t able to get it.

I recently moved into my own house, with my boyfriend, so I went to citizens advice for help on benefits in general not just disability ones. I asked about DLA again and they explained it was now PIP and we looked through the criteria together. It turns out I only got 2 points and needed more. I did not need an interpreter, etc so therefore I was not eligible for PIP. I felt that I didn’t get to put across my individual struggles. I felt this unfair as in Wick most of the jobs which are in shops, restaurants, offices, etc. Now I am not saying deaf people cannot do these types of work, because they can, it’s just that it can be difficult. I know this because I worked in a shop and found it extremely difficult. My hours have been cut down at work and I am looking for another job. PIP would have helped financially. I feel really disappointed that there is not enough help for deaf people.

I now plan to look into PIP again and get some support from NDCS on what to do next.

The Tyranny of the PIP Overlords

James DaviesAnd how I suffered from their wrath…..

My name is James Davies, I am 24 years old. I am a recent cochlear implantee (as of Feb 2013) prior to that I have always worn hearing aids. I live in the South of England in rural Surrey, employed as a Project Engineer for a respectable company.

I started the process of applying to PIP some point late May 2014, I had realised that I needed some form of help as I gained more independence (I was moving out) and needed some financial help. My friends at the time (deaf peers) recommended me to apply for DLA (they didn’t know at that point it was called PIP) and that it was a fairly straightforward process.

So I started my research, in this I found that DLA no longer exists for adults, it was re-named PIP and changed under the new Tory government. Ok I thought, just a new name and system.

First problem I came across was pretty obvious. The only way I could get the application form was contacting them via phone, now obviously I can’t do this at all. So I thought ok I’ll look for an email address since this is the internet age and surely they would have one. NOPE, zero zilch nada… no form of email contact to request an application form is listed.

So thus I contacted a charity in Farnborough called deafPLUS who agreed to phone on my behalf, I had to take some time off work just to make a bloody phone call to claim a FORM! Even that was stressful, due to them asking repeatedly to talk to me (suppose they didn’t realise deafness existed lol) and the woman who helped trying to explain that I could not hear the phone and she was speaking on my behalf. Anyway I managed to get that form request submitted and it came in the post around June 2014.

I read through the booklet that came with questions, It was immediately clear that it was based on a point scoring system to which I thought was detrimental to deaf people like myself. I was already sceptical that I would have any chance of getting this benefit.

The questions are very vague, and not very straightforward. I had no idea what to put, so I put some answers that I guess answered the question more directly. I suppose this was a mistake, I could have answered the question however I wanted, adding more information related to how my deafness effects me in the question they ask.

There was not much information on the internet from deaf people who have applied for PIP (relatively new at the time) for me to use to my advantage.

I felt this form was impossible, none of the questions really help a deaf person to portray their problems and why I feel I am entitled to PIP.

After I had filled it in it felt like had barely answered some of the questions.

I received an answer in November 2014, formally rejecting my application for PIP. I was devastated, I had no chance with this system. My problems in everyday life could not be explained in this restrictive form.

Ironically, the letter stated that I would be phoned up and explained why I hadn’t received the benefit. Huh? Did this guy even read my application? He would have read that I CANNOT use a phone, let alone hear very well….

I cannot remember but I think they phoned me on my mobile, obviously I couldn’t answer the phone. I was at work as well, no one could have possibly picked it up for me, it is my personal matters too.

After that phone call I don’t think I received anything. That was it.

Now I know I could have appealed against the decision but I was so disheartened by the process and I felt I would never win, the questions and acceptance criteria is flawed.

I have since this not tried to reapply, I missed the 1 month appeal time.

I hope to try again with some help.

Liam’s Story: Volunteering with the NDCS Youth Advisory Board

Youth Advisory Board (YAB) volunteer

Liam, Youth Advisory Board (YAB) volunteer

It’s been over a year now since I first joined NDCS’ Youth Advisory Board (YAB) as a volunteer. The role of the YAB is to work closely with the NDCS and help them with their campaigns and projects. After finding out through NDCS’ online website for young people, The Buzz, I decided to apply…

The reason I chose to join the YAB was because I have always liked to voice my opinion on issues that matter to me. My deafness is one of the main things I am passionate about, and being able to share my thoughts and opinions with other like-minded, deaf young people from across the UK seemed like a great opportunity to get involved in.

As well as that, I’m a huge fan of networking and meeting new people. I’ve been to three YAB meetings since March 2014 and I’ve met some great deaf role models, made new contacts and friends for life in my fellow YAB members.

Lastly, I always wanted to learn British Sign Language. Where I live, there isn’t much opportunity to learn, but one year on, I’m proud to say that I am learning more BSL every day. Over one year on from joining the YAB, all of us have achieved some great things.

In terms of campaigns, one YAB member, Zanna, recently took legal action against the Government for not consulting deaf young people about the proposed changes to the Disabled Students’ Allowance, and forced them to delay their plans to cut back support for disabled students (read more about this story here)! Other members of the YAB went to numerous party conferences to meet MPs and ask key questions concerning deaf young people. In particular, the Board contacted the Department for Education to tell them our thoughts on teaching assistants (TAs). We have also contacted the NHS and health commissioners about local audiology services. Overall, the YAB’s campaigning work has been quite impressive!

But that’s not all. We’ve helped the NDCS with designing leaflets about the Local Offer, vision statements, as well as sharing our thoughts on resources that the NDCS creates.

As it’s Volunteers’ Week, now is the perfect time to recommend getting involved in voluntary opportunities like the Youth Advisory Board. Opportunities like these are so important because there’s endless benefits to both you and the organisation you are helping. By seizing opportunities like these, you have the chance to make personal achievements (make new friends, develop new skills and so on), as well as make a key difference to an organisation through giving up your time, sharing your thoughts and helping them with their work.

For deaf young people, I cannot recommend the Youth Advisory Board enough, and for everyone, I thoroughly recommend exploring every voluntary opportunity there is available to you – the possibilities and benefits are endless!

Elin’s Story – Glue ear and me

Elin Wyn, Policy and Campaigns Officer Wales

Elin Wyn, Policy and Campaigns Officer Wales

I had glue ear when I was about three or four years old. I don’t remember much about it, other than being told I had to eat copious amounts of ice cream after an operation to remove my tonsils and adenoids. I never imagined that fifty years later I would experience glue ear again.

It started in January after a particularly stubborn cold that just would not go away. I noticed that I had to turn the volume on the television louder and that I was missing bits of conversation in the office. As the weeks went on my hearing gradually got worse. Meetings at work were increasingly difficult – not only could I not hear everything that was said but because I could hear my own voice very loudly in my head I spoke more quietly than usual. Even when I did try to take part nobody could hear me! My social life almost disappeared. I went to the theatre one evening and despite sitting in the fourth row from the front still couldn’t hear everything. When I met friends in a pub or restaurant it was practically impossible for me to follow conversations in the noisy environment. So the past few months I’ve been staying at home bingeing on television box-sets!

Being so isolated made me think more about the children that I support in my work as a Policy and Campaigns Officer for NDCS Cymru.  80% of children will experience temporary deafness because of glue ear before they are 10 years old. Some children will have recurring episodes that may last for several months or years. Not being able to hear in class or play and talk to your friends can have a devastating impact on a child’s language and social development. Sadly many education and healthcare professionals are not aware of the signs that a child may be experiencing temporary deafness. A child may become withdrawn, might not respond to questions or be isolated in social groups. When I had my glue ear as an adult I was able to understand what was happening and tell people that I’d lost my hearing. A young child might not understand or have the confidence to say that they had problems hearing. That is why it is so important that we ensure that deaf awareness is a high priority for all schools.

As for me, after the GP prescribed several different nasal sprays and drops, four months later my hearing is more or less restored and I have managed to avoid the grommets operation suggested by the ENT consultant. And my neighbours are happier – the television volume is back down to normal!

Neil’s story: Deaf Learners Conference 2015

Neil Johnson

Neil Johnson, NDCS Young Campaigners

As part of our work over the last year on closing the attainment gap for deaf learners, NDCS recently held the first ever Deaf Learners Conference in partnership with Education Scotland. The conference aimed to gather the thoughts and experiences of young deaf learners on their education ways it could be improved, and provide inspiration to encourage achievements and success. NDCS Young Campaigner Neil Johnston tells us about his experience of hosting the day.

25th of February, 9 o’clock, The Renfield St Stephen’s Church, Glasgow. The past couple of weeks of brainstorming, planning and preparations led to this moment. Around the large hall, seated around multiple tables, are deaf school pupils from all across Scotland all converging on this location to let their thoughts on their education be heard. My co-host, Amy, looks at me and asks, “you ready?” I nod and we head onto the stage. Amy gets ready to speak. There is no turning back now.

A member of the technical staff comes up to us and whispers to us – the microphones aren’t working properly, he will need a few minutes to fix them.

Technology, eh?

My name is Neil, and I was one of two hosts at the first ever Deaf Learners Conference. When my co-host and I stood on the stage, the first thing that ran through my head when I saw the sheer number of young people in the large hall was, “all these people are from Scotland?” To be fair, Scotland is a pretty small country compared to England, but you will never find such determined and enthusiastic young people who are dedicated to making their education not only right for them, but for future generations to come.

One of the main highlights of the day was hearing what the young people thought of their education as it is really important for them to voice their opinions on what and how they learn, as every person learns things in their own way. It was also really interesting to hear what solutions the young people came up with to tackle the different problems that arose from the group talks at each table. Another great highlight of the day was listening to the fantastic inspirational speakers. The amazing Frankie McLean and the seriously impressive Danielle Joyce, an 8-time World Record swimmer (and one of the tallest 19 year olds I have ever met, which is really useful if you’re a swimmer) as well as interviewing two other deaf role models – the hilarious Glen Hodgkinson and Jennifer Murray who is blind as well as deaf. Her determination to live life to the full is really inspirational.

If there is one thing that I’ll take from the day it’s that, even though the young people speak with their hands or voice, the passion for their education proves that there is more to deaf young people than society sees. All society needs to do is give them a chance to find their own voice and give them the right support, then there is nothing they can’t do. I loved every minute of the Deaf Learners Conference and I would love to do it again. Big thanks and well done to the National Deaf Children’s Society and Education Scotland for putting the whole event together.

Husna’s Story: Why I’m campaigning to save the Overland Day Nursery

Parent Campaigner

Husna Begum, Parent Campaigner

Hello, my name is Husna Begum. I am a mother of a deaf child and I am also the chair for the Tower Hamlets Deaf Children’s Society (THDCS). My son Hamza was born with profound sensi-neurol hearing loss. He underwent surgery for bilateral cochlear implants aged 17 months. Previous to this, he had no access to sound whatsoever. Hamza is now 4 and attends a mainstream school with a Deaf resource Base, and is doing extremely well. His speech is coming along fantastically and so is his range of sign language. It’s when you see your child develop and improve day by day that you feel proud as a parent. You feel as though there is hope after all. I have had fantastic support from the Teachers of the Deaf in Tower Hamlets who have stood by and supported me and my son throughout his early years.

I became Chair for Tower Hamlets Deaf Children’s Society in September 2014. I can honestly say that it has been challenging and exciting at the same time. Since September the THDCS have had a lot going on. We organised our annual deaf picnic, which we held at Mile End Children’ Play park. The children and their families had a great time and we had a very good turnout. We had an entertainer, bake sale and much more. Our picnic event was written about in the East End Life newspaper. I have attended training days organised by the NDCS to make sure I am able to fulfil my role. However becoming Chair has not always been a happy event. We were shocked to learn that Overland day Nursery was under threat of closure/privatization by Tower Hamlets Local Authority. Overland day nursery is a unique nursery. It’s the only one that provides a resource base for the deaf/partially hearing children in the borough. The nursery provides the much needed early intervention to help support and maximise the children’s listening and speech and language development.

Image of Tower Hamlets Deaf Children's Society

Tower Hamlets Deaf Children’s Society Committee (Husna centre) Image courtesy of Tower Hamlets Deaf Children’s Society

Overland day nursery was attended by my son Hamza at the age of 22 months. During his time at the nursery he made a huge improvement in his listening and communication skills. He had picked up on a vast array of sign language and was able to differentiate between different types of sounds. He became a confident little boy and started to use speech. I was overwhelmed with his improvement, a child who never spoke, started to call me mum. As a parent it was the most memorable and beautiful moment. The staff at Overland are an invaluable asset. They are specialised in all things deaf related, British sign Language and knowing how to deal with hearing aids and cochlear implants. They provide support and empower the deaf children with a sense of belonging in the deaf community and integrating them with their hearing peers. The nursery is purposely built to meet the needs of the deaf children. The rooms are soundproofed and have good acoustics. All this is needed to maximise their listening potential. In a deaf child’s life this is a very sensitive time when their brain is ready to learn. If these learning opportunities are missed it will be even harder to learn these skills later on in life. My son had the best start in life and was given the opportunity to access early years support. I know that he can achieve anything. However, this may not be a possibility to others if the nursery is taken away.

THDCS have been attending meetings and protests to help stop the proposal from going ahead.

As part of our ongoing campaign I have started a petition, I hope you will show your support for this vital service and sign.

Thank you.

Emily’s Story: How different things may have been

Emily Meacher, Campaigns Support Assistant

Emily Meacher, Campaigns Support Assistant

“Go outside to the end of the playground and try and listen to what I am saying; to show everyone how it works!”

I reluctantly head outside, and turn the radio aid on, and my class teacher starts talking into the microphone.  Of course, I can’t hear her as the radio aid doesn’t do anything at all for me, let alone lip-read because the teacher is too far in the distance. The whole class peer out of the window staring at me in fascination of how the radio aid works. And this is the earliest memory I have of being at primary school.

I was only 7 years old, and of course was too young to express my embarrassment. I was the only deaf child in the school, and at the time I felt I was happy, and whenever people said ‘you were the only deaf child in school?!’ I was happy to say yes, and that it was pretty plain sailing for me.

But then as I got older, and started to make deaf friends, I realised that I just ‘put up with it.’ And that wasn’t good enough. I was too young to stand up for myself and say, ‘I want a Communication Support Worker’ or to say ‘I don’t understand.’

Often in class I was too shy to put up my hand, in case I misunderstood the teacher’s question. This had happened many times, and so it made me not want to shoot my hand up because I worried I would say the wrong thing. It wasn’t just in the classroom that I struggled at times; I often found school plays so boring, as when it came to singing, I just moved my mouth up and down to make it look like I was singing!

It wasn’t all that bad though, I met my best friend in year 5 who I am still best friends with to this day, and she helped me a lot. Thanks to her, I made lots of other friends. She helped bridge the gap between me and hearing children in school.

Emily

Emily, aged three

I went to Mary Hare School when I was 11, and that was the first time I realised I wasn’t the only deaf kid. And I felt I really belonged, as it felt so nice being able to communicate with everyone the way I knew how.  I have friends for life, and it made me the person I am today.

I worked at Roding School for two years as a Teaching Assistant (TA), which is a pretty amazing school. It is a mainstream primary school with 40 deaf children. I worked in a class with four deaf children, and they had a great Communication Support Worker in class. Their job is to empower deaf children, to give them a voice, to give them a deaf ‘identity’, to teach them to be assertive, to put their hand up and to say if they don’t understand. And I had to admit I felt a bit envious for them, as I didn’t have that.

I had a lot of support in primary school yes, thanks to the Teacher of the Deaf and TA but couldn’t help wonder how different things may have been if I had the confidence to speak up.

So if your deaf child starts in primary school, do find out what support they can receive, and tell them that they have a choice and don’t always assume they are doing ok if they don’t say anything.

I have just started working as a Campaigns Support Assistant for NDCS in the Policy and Campaigns Team, and I am really excited to get stuck in. I want to be a part of making a change in deaf children’s lives. The NDCS Campaigns Team do an amazing job for deaf children, and with your help, a small difference can go a long way.