Tag: Special education

An open letter to Minister for Education and Skills, Richard Bruton TD

4 July 2016

 

Richard Bruton TD, Minister for Education snd Skills

Dáil Éireann,

Kildare Street,

Dublin 2.

An open letter to Minister for Education and Skills, Richard Bruton TD

Dear Minister Bruton,

My name is Jessica Ní Mhaoláin, I’m a 24 year-old student from Cork City.  I’m writing to you to give you an insight into my world as a student with a severe vision impairment, and I would also like to offer some recommendations to you as a service user of special education services for more than 20 years.  I completed primary and secondary school, and am currently applying for a PhD in UCC, where I have  already completed a BSc in Health Promotion and a Masters in Government.  My masters research was around the area of special education, and my PhD topic (if approved) will follow on from it.  I’m hoping that by reading this letter, you will take some time to think about the plight of many other children, teens, and adults like me who are currently working their way through the education system – some with more success than others, as is the case in my situation.  Hopefully, an insight like the one I will write you can assist you in deciding how best to apply funding in sections of your department ahead of the next Budget, and may also open a dialogue between a service user, like me, and you as Minister.

Firstly, I would like to give you an overview of my disability.  From birth, I have suffered from a condition known as oculocutaneous albinism accompanied by nystagmus.  Oculocutaneous albinism is a rare disorder due to a genetic abnormality that effects the skin, hair and eyes; my body cannot produce melanin because of it, and therefore my optic nerves failed to develop properly.  Because of this malformation, I can see about 3-4 feet in front of my face, and after that my world starts to blur.  I also suffer from an involuntary movement of the eyes, known as nystagmus; my eyes ‘shiver’ (for want of a better word) and this prevents me from focusing my eyes on anything, including when I’m reading or writing.  As you can probably imagine Minister, this disorder has a considerable effect on my day-to-day life; I use a cane to navigate my way around, I cannot drive, I cannot read menu boards or small print in newspapers, and it also effects my fine motor skills which restricts my ability to write neatly or draw diagrams.

My journey in the Education system began in the mid-nineties when I started at my local Montessori in Ballyphehane, Cork.  At first, the differences between other children and I went largely unnoticed – we were all learning skills at the same rate as 3 and 4 year-olds do.  It was when I started primary school that my disability really began to hinder my ability to learn at the rate my schoolmates were.  We learned, as every child does, to read and write through exercises on a blackboard demonstrated by our teacher.  Similarly, we learned about history, geography and maths the same way.  But I couldn’t see the blackboard from my seat at the front of the class, and there were no vision aids available to me at the time.  I didn’t fail to learn, however I learned far slower than my friends and fell behind quite early in my schooling – despite the help I did receive from my school who, at the time, had no legislative requirement to assist a child like me but did so because it was what I needed.  Being honest and very candid about it all, I was almost nine years-old before I really grasped how to read and write properly, and this only occurred because services began to step in and help me – the Education Act of 1998 came into force but did not really ‘filter down’ until around 2001 for me – I was almost 10.

 

Services I availed of in school were largely in the area of teaching support and resourced learning hours.  These were put in place to help me catch up to where my class was – I missed the basics of reading, writing and maths, and unfortunately I still feel I never regained what I have missed in those starting years.  The help came a little too late for me, because of many reasons; financial decisions within the Dept; lack of understanding of my disorder; lack of training for teachers in different learning modes; and lack of classroom assistance like an Special Needs Assistant.

Luckily, the availability of these services improved within the Primary teaching setting after I moved onto secondary school, something I was so happy about.  Until I heard they have begun to disappear again.  Before the last election in February I spoke out about my worry at the effect recent special education cuts in Cork would have on the future of the children at the centre of these cuts.  I know better than most, Minister, that a child with any kind of disability is at risk of failing to learn the basics if the help of a scribe or SNA isn’t in place for them – my case isn’t just a once off.  My heart broke for the families of these children when I learned that their SNA’s had been cut – for me, that would mean a ‘working pair of eyes’ were taken from my classroom experience.  An SNA is more than a classroom assistant to children with a disability – for some of us they can replace a sense we have lost such as sight or hearing, for others they are a physical support if their impairment has left them unable to write.  And especially for children on the Autism Spectrum, these assistants are a major support for them as they integrate into mainstream aspects of school life.  I sometimes wonder if the role of an SNA is underestimated or misunderstood by some in the education sector, and perhaps this is why their position is sometimes treated as a luxury by Department officials.  Of course, I’m fully aware that financial resources are an issue in every government department and also the idea of special education is to hopefully allow the child independence from the assistant at some point – but depending on the disability the child is dealing with, it isn’t always practical to have the aim of eventually removing such an important support.

Although I have been lucky in how I got through my school years and made it to a fantastic university which has been constantly supportive of my needs, it is just that – luck.  I have been lucky with the teachers and SNA’s I have met along the way.  And I’m sure you would agree with me when I say that no child’s education should be left to chance with only luck on their side.  Education is a basic human right for us all, education the tool that helps people escape from the poverty trap, education is our way to integrate into different aspects of society and enhance our lives with both knowledge and the enjoyment of reading our favourite book, or discussing a recent play – or just being able to balance a chequebook.

Minister, I intend to write to you monthly with these education updates and with ideas I have researched into improvements that can be found in the Special Education sector.  There are so many things that can be done – big and small changes – that they are too numerous to detail in one letter alone.  I don’t believe that your government, or any other government before you, has ever intended to wilfully neglect the Special Education sector.  However, I do believe you and your officials can benefit from the input of a service user like me to assist in targeting areas which need improvement.  As I have said above, I have been lucky to find my way successfully, but many coming through the system before and after me have not been as lucky.  My hope is that you or your staff would be open to establishing a rapport with me.  Although I have the research experience having completed a Masters Thesis in the area (which I will happily forward to your office should you wish to read it), I also have the practical experience of dealing with the Dept of Education as a service user for more than 20 years.

I believe you and I both want the same thing for children with special educational needs – we both want them to have an equal playing field when it comes to learning and reaching their full potential.

Is mise le meas,

Jessica Ní Mhaoláin, BSc., MBS.

Well That’s School Covered

For me, there was always a massive difference between education and school.  I’ve always loved being educated and learning new things, but I never, ever liked school.  I think it was mix of things; part of it was the simple fact that school for a child like me wasn’t school for a typical 4 or 5 year old.  And another side of it was that I was probably one of those kids who just didn’t enjoy school anyway, regardless of my needs.

 

School for a kid like me was awkward and full of questions related to that awkward ness.

“Mammy, why can’t I write things down from the blackboard? Everyone else can”

“Mammy, why do I always have to sit at the front all the time?”

“How come no one will pick me for their team in PE? Why am I always left until last?”

 

I started school in the mid-nineties, and I pull no punches when I say that there was next to no supports for a child with special needs.  There was nothing.  Most of what I remember in the way of supports was a few hours of resource a week and having to use vision aides during class time.   And they were really awful aides to use! One was a hand held magnifier that was quite thick and round, really it would’ve been better used as a paperweight!  Another was a handheld telescope type thing for seeing the blackboard or whiteboard.  I mean, imagine being 5, 6, 7 years of age and having to use stuff that makes you stick out so obviously?!  Because kids can be harsh, it’s just their nature to say what they think.  So a lot of the time I’d do my best to avoid using them, I wanted to be just like my friends and my way of doing that as a child was to pretend nothing was wrong and that I didn’t need these things.  That culminated in me falling behind, in terms of spelling and maths – things that are primarily done on a blackboard.

 

That being said, things definitely improved towards the end of primary school, when Special Needs Assistants (SNA’s) were introduced to primary and second level.  The help that comes from someone sitting down and taking notes for you when you’re dealing with a severe vision problem can make a huge difference to learning.  And I can say without doubt that if it wasn’t for the help of my SNA’s (most of which I’m still in contact with because you do become that friendly), I probably still would be that little girl who struggled to spell properly and couldn’t do maths very well.

 

College.  Well now, that’s a whole different ballgame altogether.  I can truly say that it was in college that I really came out of my shell.  It’s a total cliché but entirely true!  It’s where I really began to enjoy being “in school” as opposed to being educated, I can now enjoy the two hand in hand – and that’s how it should be!  Now, I’d be lying if I said it was a breeze, it’s not.  The nature of my vision problem dictates that my eyes “get tired” as the day goes on and that’s an obvious problem when you have days in the week where its 9-5 lectures.  The college system of applying for help is different and I think that has a big impact.  If you enter as a DARE (Disability Access Route to Education) student, or when you enter normally you can register with your colleges’ disability support service.  They’re the ones responsible for ensuring your needs are assessed and catered for.  In my case, most supports I’ve needed or asked for I’ve been granted, which is mostly a note taker, exam supports and sometimes learning supports.  Learning supports might seem like an odd one because I have a note taker but it’s not always easy to gel together what’s on lecture slides to the notes, especially when you’re mostly relying on sound and speech to learn like I do.  I found the social side of college much easier than the clique type thing that goes on in secondary school.  In secondary school, everyone’s fighting to become top dog and cliques form according to music taste, fashion sense etc.  Whereas in college, you have your class, societies and clubs to get involved in, and it’s much easier to integrate that way.  You (generally) lose that self-consciousness you had as a teenager and become more comfortable in your own skin, disability or no disability.

 

To be honest, I do think some of my dislike to school could have been avoided had my parents known what supports I’d need.  Special needs education was only really in its infancy (pardon the pun!) when I started school, and there was a definite “them and us” mentality when it came to approaching the Department of Education for supports.  Because most parents with their first child in school with special needs won’t know what supports their child needs.  Of course they don’t, they’ve never dealt with this before!  The parents are trying to navigate what supports their child needs and how to get them, and they generally did that with the help of a department official who was constantly worried about their bottom line.  Simply put, when I was in school, the parents and kids never had an advocate, there was no third party there to say “I think this would help your child – let’s apply for it”.

 

When I saw the NCSE (National Council for Special Education) had printed a booklet to help parents out with this in recent weeks, I was delighted.  I really was!  It’s great that parents will finally have impartial information from the body that is there to support them and their children during their school years.  Having read the booklet myself, which is available here, it’s extremely comprehensive.   The moderators have fully explained exactly what services children can avail of, and what they may need to do to get these, in terms of evidence.  They are very honest about what services a child should or should not get, and they deal with real practicalities for children starting school with any kind of special need.  I think this type of publication will go a really long way to helping give parents a direction when their kids are starting school, which is a massive help to the child.  However, one thing that the NCSE has failed to address within this publication is the vast amount of cuts across the board to children with all manner of special needs.  With the number of cuts to special needs children’s’ supports in recent education budgets, its vital parents begin now to acquaint themselves with the supports their children will need along the way.  Above all, parents are the ones who will do the most amount of fighting for their children (whether the kids ever realise this or not!), and they have a better chances of winning battles with the Department of Education when they’ve fully equipped themselves with the information.

 

I’d like to finish this blog post by asking for some feedback.  What are your experiences of dealing with the support networks for your child, or perhaps for yourself?  Were there some major roadblocks you came up against when fighting for your right to education?  I’m really interested to hear the stories of some others and I’d love to get a bit of conversation going, especially for something as vital as this topic.

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