Monday, March 27, 2017
359FansLike
453FollowersFollow

Lorraine Keating and Eilish Burke sought to help people with an intellectual disability to take better care of their own health, using a number of innovative methods…

  • Taking care of your health is important
  • Sometimes going to the doctor or doing health tests can be hard and frightening
  • When things are explained well it is easier to do them
  • People with intellectual disability are the best people to help get this done.

The importance of health and well-being is paramount to having a good quality of life. However, to stay healthy and happy into old age, and to experience good life quality you have to be an active participant in your own health. Policy shifts emphasise this philosophy and, for example, Healthy Ireland’s vision is underpinned with the belief that health is everyone’s responsibility.

 

Challenges and implications

Making that commitment to health is the first step on our health journey. However for people with intellectual disability, engaging with and having medical tests and examinations can pose challenges. Frequently there is a lack of available and appropriate health information – communication perception and interpretation difficulties are common, with literacy and lack of education widespread. Many healthcare professionals have little or no experience communicating with people with intellectual disability and sometimes there is a lack of knowledge of the health needs of people with intellectual disability. Physicality can pose challenges for people to actually perform the required test or often the tests/machinery used can be fear-provoking. Along with this, people with intellectual disability are frequently omitted from health research, often based on the assumption that it would be too demanding for them to take part, or too difficult to recruit.

 

If people with intellectual disability do not engage in regular health assessment for health promotion, or take part in research on their health, the gulf of disparity will continue. There will be a lack of empirical evidence to underpin policy and health inequalities, complex morbidity and earlier mortality will be a feature for people with intellectual disability into the future.

 

What we did to overcome the challenges 

As part of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing, and to provide robust empirical evidence of health, a suite of health assessments were included in the second wave of data collection. These assessments were specifically chosen to be transportable, provide a comprehensive overview of health and be comparable to the general population study, TILDA. The assessment suite was called ‘A Health Fair’ to remove the connotation of being tested and, it was decided that the Health Fair would go to the people themselves at a place and time that would best suit, where possible.

 

An easy to read information booklet about the Health Fair was developed. The authors, working together, gathered pictures that would represent the process, wrote short plain-language explanatories and both authors reviewed the booklet for accessibility. They then created easy-to-read explanations, in a step by step manner, for each of the health assessments involved. The developed material was then reviewed by a wider group of advocates, the study Primary Investigators and the scientific advisory group of the IDS-TILDA study.  The Health Fair was then further pilot tested and, from the feedback, any other amendments to the process were applied.

 

The results

Over 85% of all the people who were asked took part in the Health Fair, (n=604/708). People found it easy to understand and enjoyable. People said they would do it again and that it was explained clearly to them – the following quotes demonstrate these points: ‘I really thought that was absolutely great, it was very interesting really, I really liked It’; another noted ‘Ah, I’d stay here all day that was lovely and easy’. Some said they were apprehensive but when the explanations were given clearly this helped them understand what was going to happen and they were happy with things, ‘it was good, it was excellent and I wouldn’t mind doing it all again’.

 

Learning from our lessons

Keeping in mind ‘nothing about me without me’, this result of having easy-to-read information included demonstrates that, with the right inclusive approach, the correct accessible tools and being prepared to reasonably adjust inadequate built environments, impairing attitudes and other barriers to engaging people with intellectual disability in health assessment and research can be overcome. The design developed and used in this study is one that can lend itself to the healthcare field. Healthcare professionals who ensure personhood is core to their delivery of care will support people with intellectual disability to engage, become more confident consumers of health and ultimately promote best health and happiness as we all grow older in Ireland.

Author Bio

Lorraine KeatingLorraine Keating is an advocate for people with intellectual disability. She has supported the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing for a number of years, reviewing questionnaires, accessible material, building accessible tools and assessing fieldworkers training. She has given talks on her life experience to students in a number of health professions from nursing to psychiatry and sports sciences. She  enjoys crafts and is a keen knitter. She is very interested in the rights of people with intellectual disability and has carried out a lot of work in this area to ensure people with intellectual disability are properly included in research.

 

Eilish BurkeEilish Burke is a nurse and is the Ussher Assistant Professor in Ageing and Intellectual Disability at Trinity College Dublin. She has worked in the area of intellectual disability for over 25 years. She was previously project manager of IDS-TILDA promoting the health and wellbeing of adults with intellectual disability. As part of her PhD work in IDS-TILDA she conducted the full objective health assessment element in the second wave of data collection. Her area of research interests is bone health, health indicators and health promotion, accessibility and inclusion.

Conor Murray reports on the Open Training College (OTC)’s recent success in the rapidly-expanding field of Blended Learning.

  • The Open Training College won a big award for their eLearning course.
  • The event took place in Belfast.
  • The Open Training College has been going since 1992 providing an option for students to learn from home instead of at a college.

Chosen from over a hundred entries from universities and colleges across the globe, the Open Training College (OTC) was recently awarded a prestigious First Place by the International e-learning Award committee in the category ‘Blended Learning – Academic Division’.

The International E-Learning Awards are given each year for the best work in e-learning, mobile learning, and blended learning, in two divisions: Academic and Business/Industry. All submissions are evaluated by the IELA Awards Committee, who look for a variety of attributes. These include, among others, educational soundness and effectiveness, usability, and overall significance. The judging committee is made up of e-learning experts from around the world.

At the awards ceremony held in Belfast in September, the College received the award for their online module devised for Social Care students, entitled ‘Professional Practice and Ethics’.

Blended learning is the combination of face-to-face (classroom learning) with online learning and provides a strong model for learning. The College has students from all over Ireland and the online model allows the students to stay in contact with the College and to engage with other students, who are all practitioners, in a supportive, well-resourced learning environment in between their days in the classroom.

A lot of hard work has gone into the fine tuning of the blended learning model over the years. Listening to the students and actioning their feedback has all helped improve the model, so I think it’s as much their award as ours,’ states Raymond Watson, Head of Online Learning at the Open Training College. ‘I would also like to acknowledge the crucial work done by my colleague Niav McEvoy, our Online Tutor, and Alan Murphy, our e-Learning Consultant, which definitely gave us the edge in this competition over many others, such as the University of Vienna and the University of Porto.’

Raymond recently presented a paper on an online resource on Safeguarding, for National Federation of Voluntary Bodies agencies (an An Pobal funded project from the dormant accounts fund, in partnership between the Open Training College, St. Michael’s House and the NFVB). He says that “online learning has been slow to start within services for people with disabilities, mainly due to the IT structures within organisations, the costs in recent austere times and the fact that starting to learn online has a fear factor and involves a training culture change for many of the staff. But in specific stages of learning, online learning has many strengths including the ability for it to be ‘Just in Time’ training, having the training immediately available when things happen at a local or national level. Despite challenges faced by some disability organisations, e-learning options are continuing to grow and make a positive impact on staff training in Ireland. It is now known and understood that the advantages far outweigh any negatives and this is evidenced by the greater demand from organisations seeking to pilot e-learning training initiatives with the OTC in 2017.”

The College prides itself on supporting their students through online learning from the moment of their application. Online learning supports give busy practitioners access to flexible learning and the ability to study anytime, anywhere.

The model of delivery has been developed and implemented over a number of years for our students. We have certainly seen our students benefit from its use, so it’s an honour to now receive the formal recognition from such a respected organisation as the IELA,” commented Dr Karen Finnerty, College Director at the Open Training College.

The Open Training College, established in 1992, is a recognised Third Level College delivering QQI-accredited courses to managers and staff working in the disability and wider non-profit community and voluntary sectors. Core courses concentrate on areas such as Social Care and Management. Please contact Conor for any course information on cmurray@opentrainingcollege.com or 01-2990580.

OTC wins eLearning award - IELA award OTC groupDr Karen Finnerty, College Director, and Raymond Watson, Head of Online Learning, Open Training College with graduating students

Author Bio

Conor Murray is Corporate Services Manager at the Open Training College (OTC).

Congratulations to all the recent graduates of the Open Training College who attended the Conferring of Awards ceremony on Saturday, November 19th at the Concert Hall, RDS Dublin. The successful graduates achieved Third Level awards in the areas of Applied Social Care and Applied Management, in the disability and wider non-profit sectors.

Aisling Matassa Gerry Clarke award 2016Special mention goes to Aisling Matassa (The Gerry Clarke Award), Tania Quinn (Social Care Ireland Award for Academic Excellence), and Claire Sutherland (The Wheel Management Award for Academic Excellence) for achieving their respective ‘Student of the Year’ awards on the day. The awards were presented by Dr Karen Finnerty, College Director, and Evelyn Clarke.

Tania Quinn Social Care award 2016Claire Sutherland, a Speech and Language expert at St Michaels House, stated “I am thrilled to have received my award from the Open Training College. It is a great honour. I am also delighted to have received my management qualification today.  I loved the practical value of studying the management course and it will stand to me in my future work. I wish to thank my family, friends and co-workers for all the support along the way.”

Claire Sutherland Management Award 2016149 Graduates received accredited awards (QQI) for courses in:

– BA in Applied Social Studies (Disability)

– Certificate in Applied Management (Nonprofit/Human Services)

– Honours BA in Applied Social Studies (Disability)

– Learning Theories and Teaching Strategies for People with Disabilities

– Higher Certificate in Applied Management (Nonprofit/Human Services)

– BA in Applied Management (Nonprofit/Human Services

– Certificate in Supported Employment

Additional QQI awards were received by students completing the following courses:

– Person Centred Planning – Focus on the Individual

– Managing a Positive Behavioural Culture

 

Each course is delivered through the award winning ‘Supported Open Learning model’ which is designed specifically to allow frontline workers and managers benefit from access to accredited, flexible educational opportunities that transform their ability to implement best practice within human services in Ireland today. The Open Training College is also a recent winner of the IELA International E-Learning Award 2016 for blended learning.

More information about OTC courses can be found on the College website:

www.opentrainingcollege.com, or by calling (01)2990580 or emailing enquiries@opentrainingcollege.com

Deirdre Corby has sent in details to Frontline Magazine Ireland of a new programme launching in Dublin City University for people with an Intellectual Disability and others with in the field…

The School of Nursing & Human Sciences, DCU are launching a new programme in the area of relationships and sexuality for people with an Intellectual Disability.  It is open to all stakeholders working in the field of Intellectual Disability and is a graduate certificate course that aims to provide knowledge which is appropriate, accurate, evidence-based, up-to-date and free from discrimination, gender bias and stigma.  We are now accepting applications.

https://www.dcu.ie/prospective/deginfo.php?classname=DC675

Author Bio

Deirdre Corby PhD. Is a lecturer in Intellectual Disability Nursing at DCU.

While Selective Mutism is not a concept that is familiar to all, it requires a positive, sensitive and practical approach. Here, Nicola Kealy finds a text that gives much food for thought when seeking an understanding of the issue…

  • This book was written by Carl Sutton and Cheryl Forrester
  • Selective Mutism (SM) is an inability to speak but having a lot to say
  • It is told through the stories of people that are close to someone with Selective Mutism (SM)
  • The book reviewer began reading with the question ‘why?’ in her head whcih changed to ‘how’. How could she relate and engage with a person with SM

Selective Mutism in Our Own Words: Experiences in Childhood and Adulthood by Carl Sutton and Cheryl Forrester. Foreword by Donna Williams ISBN: 978-1-84905-636-6

“The biggest thing that I didn’t understand was that I didn’t ever truly consider myself to be quiet – inside my head I was so busy, creative and loud that the description never made any sense to me.”                                                                                                              – Kat P87

This book is written from a personal perspective, and is very accessible for anyone with an interest in Selective Mutism (SM). Spread out over seventeen chapters, the book is full of insightful stories by people with SM. It is compelling reading, and you cannot help but be drawn into the world that people with SM inhabit.

The various chapters look at SM in a range of settings, from early life right through to secondary school and beyond; SM and learning difficulties and parents and therapists experiences of SM.

I was drawn to this book because I am currently working with two young women with SM. I hoped that the book might give me more insight into the cause of SM and suggest positive ways that I could work with them.

“SM is not a ‘controlling’ behaviour. Why would anyone who is filled to the brim with words choose not to utter them? Nor is SM a ‘stubborn’ refusal to talk. It’s an inability to speak.”

Kimberly P40

This book throws light on what it feels like to have SM, and how it affects daily life and human interaction:

it was too frightening to speak having developed a pattern of muteness”                         – P34

“this is when I saw, first hand, the full extent of the anxiety behind selective mutism”        – P222

SM is primarily an anxious disorder and the anxiety underlying it does not just affect the voice but a person’s whole being:

In situations that make me feel anxious, I still freeze”                                                         – P123

A person with SM may not be able to show any emotion by normal human means, i.e. vocally or through facial or physical expression. I began to realise what a fortress SM can be, and ironically that a fortress can also be “a place or source of refuge or support[1], which can be further illustrated by the following:

“Research suggests that we may all be physiologically prepared to acquire fears

that hold some protective value – (Hofmann, Moscovich and Heinrich 2003)[2]

The book, as the title suggests, focuses on the experience of people with SM; it is by no means offering a quick fix for SM. In reading these personal experiences of SM, the reader is engaged and encouraged to see a clearer picture of SM i.e. an internal and external view. It is through this new view that the reader (practitioner, friend or family member) can begin to look at how they interact with someone with SM.

Hélene Cohen’s chapter “A Teacher’s Experience of Helping a Child Find Her Voice” talks about a relationship that began in primary school, through to secondary school and the present day. I think Hélene expresses clearly the time, energy, and commitment needed when working with and communicating with a person with SM through the following:

“Our part is to come up with the steps that will facilitate progress, being patient throughout and keeping our emotions away from the child. The rewards are worth every second of time, drop of patience and tear shed”                                                                                                                                                                              –P232

It is clear from reading this book that a one-size-fits-all approach simply does not work. SM is individual and unique to the person experiencing it:

Our words and the way we say them are part of our identity”                                           – P251

As a resource tool, this book is what I would call a ‘spring board to positive action’. There are so many different and shared experiences of SM present in the book, that as a practitioner it was impossible for me not to wonder how I might work with and approach a student or client with SM.

I have always felt that patience and understanding are key ingredients in successful communication with anyone. Sometimes, we are too focused on the whys and wherefores instead of focusing on the possibility within a shared moment. Sometimes, there are no satisfactory answers and frustration can build and blind us.

I started out reading this book asking why? But now I find myself wondering how? How do I as Practitioner and Teacher assist my clients and students to find their voice? How do I create and facilitate a nurturing, safe and creative space for these voices to emerge?

This book is not an easy read because of the emotional impact SM has on people’s lives, but it is a positive and inspiring look at SM. It will not tell you what to do, but it will encourage you to look beyond a person’s silence and how it makes you feel, to the person who is struggling to communicate through the silence.

The biggest message of my story is that change is possible

– Beth Moran

http://www.thefreedictionary.com/fortress

Helping Your Child with Selective Mutism: Practical Steps to Overcome a Fear of Speaking – Paperback – August 1, 2005 – Angela E. McHolm, Charles E. Cunningham, Melanie K. Vanier.

Author Bio

12 - Nicola KealyNicola Kealy is a dramatherapist and the Artistic Director of Rhythm Room www.rhythmroomdublin.com

Mary de Paor recently attended the seminar held by DCU’s National Anti-Bullying Research and Resource Centre (ABC). Here she reviews the various contributions on the subject, delivered by a range of experts from Ireland and the United Kingdom...

  • ‘Let’s Talk about Bullying’— was the title of a seminar held recently.
  • Bullying is a major problem for people with disabilities.
  • Over the years Frontline has featured several articles on the subject of bullying.
  • Approximately 30 people went to the seminar.
  • Tackling bullying must be done in five ways: listen, respect, understand, challenge, and celebrate difference.
  • Shelagh and Tara Leech, with Tara’s sister Lisa, gave a story of the anger they have experienced over several years, following cyber-bullying of Tara by a long-time ‘friend’.
  • People with intellectual disability may be bullied within services as well as in the wider community.

‘Let’s Talk about Bullying’— was the title of a seminar held by the National Anti-Bullying Research and Resource Centre (ABC) at Dublin City University on 3 December 2015—International Day of People with Disabilities. Bullying, whether in schools or communities, at work or in the social media, is a concern for families, therapists and researchers, and especially for those who live with, or work with, intellectual disabilities. Over the years Frontline has featured several articles on the subject of bullying. (See particularly Issue 70, pp.6-9 (Summer 2007), which featured the Stop Bullying report of self-advocates and supporters in the NIID, Trinity College Dublin.) The recent ABC Seminar provided an update on current Irish experience and research on methods of counteracting bullying toward people with disabilities.

Approximately thirty people attended the seminar, which was opened by Dr James O’Higgins, Director of the ABC. Facilitator Fiona Weldon and self-advocate Marie Wolfe set the scene and introduced the seminar speakers.

The first invited speaker was Martha Evans, Senior Programme Lead of the Anti-Bullying Alliance (London). ABA is a membership organisation with a growing network of schools and colleges in England. They have become a national voice for evidence-based practice in the prevention of bullying among children and young people. Martha discussed the longterm effects of bullying, which she defined as ‘the repetitive, intentional hurting of one person or a group by another person or group, where the relationship involved an imbalance of power.’  She described some of the ABA’s training methods, concluding that tackling bullying must be underpinned by five principles: listen, respect, understand, challenge, and celebrate difference.  The ABA organisation (website: www.anti-bullyingalliance.org.uk) coordinates a national Anti-Bullying Week in England each November.

Siobhán O’Doherty, from the National Anti-Bullying Advocacy Group, NIID, Trinity College Dublin, reported on their recent Anti-Bullying Research Project funded by the NDA, which involved 26 people. The project participants undertook a literature review, focus groups and interviews, and produced an anti-bullying guide. Later during the seminar, Fiona Weldon showed a short video made by some of the self-advocate participants in the Anti-Bullying Project. Representatives Conn Ó Rathaille and Paul Alford attended and assisted at the Seminar.

Shelagh and Tara Leech, with Tara’s sister Lisa, gave a searing account of the trauma and anger they have experienced over several years, following cyber-bullying of Tara by a long-time ‘friend’. They emphasised the need for families and services to listen far more closely, and sooner, to any indications of bullying, either in person or in social media. (See also Frontline Issue 96 (Autumn 2014), pp. 24-25).

People with intellectual disability may be bullied within services as well as in the wider community. Dr Bob McCormack gave a thought-provoking account of examples of bullying experienced by people who lead restricted lives in day or residential services: where there may be bullying behaviour among residents, where the right to refuse can be seen as ‘challenging behaviour’, where any discussion may be seen as ‘answering back’, where choices are unreasonably restricted, etc. etc. Violence within service settings is too often tolerated/accepted—as sadly shown in the Áras Attracta film. The absence of a rights culture permits, instead, a benign dictatorship under the euphemistic banner of ‘duty of care’. Bob suggested that if people working in disability services were not termed as ‘staff’, but as ‘support workers’, they might curtail their power-roles. Eliminating bullying within disability services depends on four things: rights, choices, empowerment and respect.

Jennifer Schweppe and Amanda Hayes (from the University of Limerick School of Law, Hate and Hostility Research Group) spoke of the need to develop policy and legislation to recognise and deal with hate crime in Ireland. Currently the added injury of hate crime (an attack based on bias or prejudice) is not recognised in Irish law, and it cannot be acknowledged by the Gardaí or considered in court judgments. This seriously limits the right of redress for people who are targeted because of their disability, ethnicity or religion.

Jim Winters of Inclusion Ireland concluded the Seminar proceedings with a discussion of the conditions which contribute to disabilist bullying and hate incidents. Inclusion Ireland staff receive very frequent reports of such incidents. He referred to the disturbing NDA survey of 2011, which showed a hardening of public attitudes toward people with disabilities.  He listed the causes of violence against children with disabilities: societal prejudice or fear of difference, lack of knowledge or understanding of disability, isolation or segregation of people with disabilities, lack of support for families, and untrained or overextended staff in disability services. He called for accessible information about hate incidents for people with disabilities and for better coordination between the HSE, service providers, gardaí and victim support services. Education and public awareness of the rights of disabled people need to be improved, and further supports provided for self-advocates. Inclusion Ireland has a self-advocacy resource unit.

(Contact Inclusion Ireland: www.inclusionireland.ie; tel: 01-8559891).

In highlighting the issue of disabilist bullying, the ABC Seminar provided much food for thought –on the International Day of People with Disabilities. The Anti-Bullying Centre offers training workshops to help with the issue of bullying, for people with intellectual disability and for persons who support them. Anyone wishing further information contact fiona.weldon@dcu.ie .

Author Bio

Mary de PaorMary de Paor is a former director of Sunbeam House Services, and was also copy-editor of Frontline Magazine Ireland.

Adrian Noonan, self-advocate PRO at Inclusion Ireland, wishes for greater awareness of the needs of people with intellectual disabilities at all levels of the democratic process.

People with Intellectual disabilities are not supported to register to vote, or to vote, in Ireland.
Disability services have used staff shortages as an excuse.
People with intellectual disabilities have a right to use their vote,.
People with Intellectual Disabilities need to be trained & educated on how elections work.
All buildings have to have wheelchair access, and putting in easy-read and visual and audio aids can easily be done nowadays.
Voting for the first time is a very nervous and scary time .

People with Intellectual disabilities are not supported or encouraged to register to vote, or to vote, in Ireland by government or their agencies, who can set up and organise, advertise and have training workshops around the country.  This could be done with the help and support of disability advocacy organisations.

Disability services have used staff shortages as an excuse. But it only takes one staff member to go on a computer or go to the local library to get a printout of the voting forms and bring the voting forms to their clients or disability service users who want to vote.

Disability services can also have workshops on voting in their service, by inviting disability advocacy groups in on training, and educating clients or disability service users on their right to vote and have their say.  People with intellectual disabilities have a right to use their vote, to have a say in who they want to represent their issues and needs on a local and national level.

People with Intellectual Disabilities need to be trained & educated on how elections work, and why and how many times they’re called.

When you go to the polling Station, you have to bring I.D to prove who you are. Mostly you bring your passport or driving licence and have your voting card with you, or you can’t vote.  All polling stations open from around 8am to 10pm, so people who work or go to college can vote.

Persons with intellectual disabilities should not be stopped in their right to vote. It is our right to vote and no barriers should be in the way, like accessibility to buildings.

All buildings have to have wheelchair access, and putting in easy-read and visual and audio aids can easily be done nowadays.

Voting for the first time is a very nervous and scary time for people with intellectual disabilities.  All the polling stations should be given disability awareness training to educate the staff on how to be more supportive, and the polling station can be more disability-friendly by having an easy-read platform and visual and audio aids in the polling station.

Author Bio

Adrian Noonan is PRO of  The National Platform of Self-Advocates, the self-advocacy committee of Inclusion Ireland, and Seasamh, the Kilkenny-based self-advocacy group.

Sara Porzio details the work involved in sourcing a suitable autism day service for her daughter, and the disappointment in finding it removed at the last minute. She questions whether the health service values all people equally.

Francesca left school in June 2016 but her mother was shocked to discover that accessing a post school placement, in spite of the promises of politicians,  will not be easily achieved.
Sara Porzio, Francesca’s mother, contrasts how her daughter’s experience is so different for those students awaiting confirmatiion of their third level place and if disappointed in their first choice –  other choices are available.

7 - Sara Porzio - Autism Services Frontline article Sept 2015

My daughter Francesca has autism and graduated from St Paul’s Special School in June of this year.  In 2013, I had contacted our local Disability Manager.  She told me that the school and the family would have to identify a service that best suited her needs, and that Francesca would be listed for a day service placement in 2015.  Having discussed it with all concerned, we decided upon Gheel Autism Services.  We felt it would be an ideal, nurturing environment for her.  They have various small settings called “hubs” within our local community.  She would continue to learn and work towards more independent living skills, the service was for life and it would evolve as her circumstances changed.  We were very happy with our choice.

In February 2015, she was assessed at home by Gheel and we were told she would commence the new service on the 1st September 2015.  Gheel then arranged for their psychologist to come to the school and see Francesca and the other three pupils who would be joining her.  They also arranged for the pupils to visit a hub so that they could see it for themselves.  Having struggled since her diagnosis to access first a primary and later a secondary school, I was delighted everything was at last going so smoothly.  Having been involved in groups for people with special needs over the years I had knowledge of the difficulties other parents faced in accessing services in the past.  I foolishly thought we were the lucky ones.

Late May we had the first indication that storm clouds were gathering.  We received a letter from Gheel Autism Services stating that the HSE had not been in contact with regard to the funding and that a starting date of the 1st September was unlikely.  I contacted the HSE and was told there was a problem with the funding, and that service providers would not get notice of funding until late June.  On the 30th June we, along with 24 other families, were called to a meeting in Gheel’s office and were informed that due to a shortfall in funding they would not be in a position to offer us a day service.  We left the meeting that evening reeling with shock.  Outside the building the parents gathered together, united in our disbelief at the turn of events.  We hurriedly exchanged phone numbers, promising that we would all contact our local political representatives.

The summer passed in a haze of emails and visits to politicians’ clinics.  All to no avail.  Up to this point, we had been assuring Francesca that she would be starting her service on the 1st September.  She loved school and we wanted the transition between leaving school and beginning a day service to be seamless.  The HSE assured us that talks were ongoing and they were confident some agreement could be reached.

On the 14th August, two weeks before her starting date, we received a phone call from the HSE informing us that Gheel Autism Services were no longer an option and that the assessments were being passed to another autism service provider.  The Disability Manager told us that, realistically speaking, we would not have a day service until 2016.  The proposed service provider is based in Wicklow.  All the school leavers are from the north side of Dublin.  Their intention is to set up a service on the north side of Dublin but as yet have no staff or premises.  This is not the service I researched – this is not our choice for Francesca.  A service is being cobbled together at breakneck speed with reduced funding.  Nobody can answer questions as to what type of service it will be, where it will be, how many hours she will spend there because nobody knows.  Francesca will just have to wait while the HSE tries to sort out this debacle.

We did all we had to do within the correct timeframes.  The fact that these young adults were leaving school should not have been a surprise to the HSE.  On April 16th this year, the Minister of State at the Department of Health with special responsibility for Primary Care, Social Care (Disabilities & Older People) and Mental Health, Kathleen Lynch TD stated in the Dáil that “As long as I have been in politics there was a crisis-driven approach with people with disabilities coming out of training or school having nowhere to go in September.  We did not have such a situation last year and we will not have it this year”.  I foolishly believed this empty promise.

Francesca cannot leave the house unaccompanied.  She cannot be left at home unattended.  She is lonely and asking for school each day.  It is difficult to explain the situation to her.  The parents of the twenty-four school leavers have come together as a group to try and be involved in the decisions that are being made behind closed doors for our children.

The overall feeling at this turn of events is helplessness.  I wanted so much for the move from school to adult services to be easy for Francesca.  Just after we discovered she would have nowhere to go in September, the Leaving Cert Results were announced.  On the radio, representatives from the National Parents Council advised pupils not to worry if they didn’t get their first choice of college; there were always alternative solutions and various ways to access their goals.  I felt deeply that day that my daughter counted for less than a “normal” school leaver.  There was nobody from the Parents Council to advise us on choices.  The truth is they couldn’t advise if they wanted to as, while other school leavers have a myriad of choices, Francesca has none.  In the recent referendum there was much talk of equality and how much politicians valued it.  There is no equality for my daughter.

If you wish to contact the parents’ support group you can do so via their Facebook page “Gheel 2015 Parents Support Group“.

Author Bio

Sara Porzio is a working mother living in Artane in Dublin.  She has three children.  Francesca, aged 18 years, is her only daughter.

Clare Hudson examines a number of devices and applications designed to assist and develop technology skills for people with disabilities.

Clare Hudson examines a number of devices and applications designed to assist and develop technology skills for people with disabilities.

For many people, devices such as iPods and iPads have become an extension of their arm.  They give us so much at the touch of a screen.  They keep us up-to-date on the everyday movements and special events of those who may not be in close proximity (or, in some cases, may be!), and on news from around the world.  They provide all sorts of on-the-spot entertainment from music to DVD, games to virtual worlds.  And no matter what the issue or problem someone always knows of ‘an app for that!’  This development in the technological world has brought with it fantastic opportunities, particularly in the area of support and development of communication skills.

There are so many options that it’s hard not to feel like the proverbial ‘kid in a candy store’ when we browse our ‘local’ app store (without even having to leave the house!)  But the sheer volume of options can quickly become overwhelming and it can often be daunting to know where to start; how to know what you or your child would benefit most from, what type of devices and apps would be appropriate and how to begin using the app.  This article aims to point you in a helpful direction with these decisions and dilemmas, discusses how technology can be used for social connection, and finishes with an example of how technology in the form of Skype has been used in an innovative way to connect and provide support for teenagers who stammer.

Techie Words: What the words mean

Advances in technology have brought us a new vocabulary.  I for one am guilty of using ‘techie words’ without really understanding what I’m saying, always to be caught out in the mobile phone shop when I realise I am unable to fully participate in the conversation I have started.  So, I am going to provide a quick reminder of what I think I mean by a few ‘techie’ words that will be used in this article.

‘App’ is short for “application”, which refers to a software application or a software programme used on a smartphone or mobile device such as the Android, iPhone, iPad or iTouch.

‘Android’ is an operating system for mobile phones and tablets, in much the same way that PCs run Microsoft Windows as their operating system. It is maintained by Google.

‘Tablet’ refers to a tablet computer; a mobile computer with a touch screen display, circuitry and battery in a single device. iPad by Apple is a type of tablet device.

Choosing technology: Where to start?

  1. Decide on the purpose of the device or app

Devices and apps are available to support education, leisure skills, communication, independent living, social skills and employment.  Determine whether the focus is to support the individual’s language and communication skills, or to teach numeracy or literacy, or indeed to provide an activity in which the individual can engage independently for a period of time (e.g. a game or a film).

Figure 1 outlines some of the areas of communication that can be supported and developed through the use of technology.

table 1

Figure 1: Elements of Communication which can be supported through use of technology

*AAC: Alternative and Augmentative Communication includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas.  Voice Output Communication Aid (VOCA) is an aided AAC system as it is a device in addition to the users’ body.

  1. Match the capabilities and needs of the user/individual to the features of the device/app

Factors to consider when choosing a device/ tablet include

  • screen size,
  • durability,
  • screen glare,
  • volume,
  • weight

Factors to consider when choosing an app to use include

  • the picture or symbol system used and whether and how easily the system can be personalised with photographs,
  • the ability to change the grid size (number of symbols/pictures on a page),
  • the presence or absence of a voice output,
  • the layout of the folders,
  • the capacity for language development.
  1. Identify and include an appropriate instructional approach as part of the intervention package, as this is required to enhance communication

AAC users and communication partners (the person(s) with whom we communicate) benefit from support and training to use specific techniques and strategies to maximise the benefits and effectiveness of AAC.  Likewise it is important to think about what the communication partner can do to support the user to use an app or technology to transition or complete a task more independently.

Wading Through the Apps

There are thousands of apps available to support and develop communication skills, so that the search for the right app can seem overwhelming.  I have found some of the following websites and resources useful in my work and others have been recommended to me:

http://www.dart.ed.ac.uk/asdtech/app-reviews/

On this website, apps are organised in sections relating to their general purpose (e.g. communication, education, fun, life skills) in an interactive ‘app wheel’ (last updated in April 2015, see Figure 2).  The website allows the user to click on each app icon to find out more about the app. This website also publishes regular app reviews which aim to provide an evidence-based perspective on apps for autism.

table 2

Figure 2: Interactive app wheel compiled by Sue Fletcher-Watson.

Mark Coppin has also developed an ‘Apps for ASD’ wheel identifying the features that are important when choosing a suitable app. This can be viewed at https://itunesu.itunes.apple.com/audit/COH3CQR8H2

For AAChttp://aactechconnect.com/wp-content/uploads/2011/07/Apps-SummarySummer-6.10-14..pdf  provides a list of AAC apps, including information about key features of each app, which will help in discussions with the speech and language therapist as to an app that might best meet your AAC needs.

A fact sheet about iPad and Tablet apps has been published by I CAN, the children’s communication charity, at

http://www.ican.org.uk/~/media/Ican2/What%20We%20Do/Enquiry%20Service/Apps%20factsheet.ashx

Apps relating to the various areas of communication including language, speech, emotions, social communication and organisation are outlined in an easy to read table which includes the price and comments about the app.

In my experience, many apps are regularly updated as a result of both user feedback and further advances in technology.  An example of this is in visual schedule/organisation/social story apps.  Where once these apps were personalised through use of photographs, they can now be personalised through use of video of the individual completing the task, or steps in the task.  Planned use of videos is known as ‘Video Modelling’ and ‘Video Self-Modelling’ and have been found to be effective means of skill acquisition, maintenance and generalisation for individuals with ASD (Bellini & Akullian, 2007).

Apps vary in price; some are free with others being relatively expensive.  Many apps offer a ‘lite’ version, which is a free taster of the app and others offer a free trial period of the app. Trials and ‘lite’ versions can be a very effective part of the decision-making process to know if the app is the right one for you at the moment.  In addition, there are a number of websites, blogs or forums on which parents and app users provide reviews and personal accounts of their use of the apps.

Getting Going

Apps as VOCAs

If technology is being used as a VOCA it is advisable that parents, the device user and the speech and language therapist work in partnership to identify and plan when the device will be used, with what vocabulary and the role of the communication partner (the listener) during interactions.  ‘Augmented input’ (Elder & Goosens, 1994 cited in Mirenda, 2001; Cafeiro, 2005) is an approach advocated by many in the field of AAC that involves the communication partner simultaneously touching the corresponding symbols to his/her spoken words as they are spoken.  This provides a model to use the VOCA.  Alternatively, some apps have specific instructional packages in which the communication partner is less actively involved.  Regardless of the instructional approach, integration of the VOCA into an individual’s everyday activities has been shown to lead to the most successful outcomes for functional communication (Beukelman & Mirenda, 2005).  In terms of evidence-based practice, various analysis of research into the use of technology such as iPad and iPod to enhance the communication of individuals with developmental difference such as ASD has shown favourable outcomes (e.g., Kagohara et al., 2013; Alzrayer et al., 2014)

Apps for Interaction & Leisure

We know that individuals learn best when they are interested and engaged in an activity.  If tablet technology and apps are attractive and engaging for you or a family member, it is important for communication partners and practitioners to use this interest to foster and build communication and interaction skills, even if this is not the advertised purpose of the app.  It is worth considering “The 7 Ps of Using Mobile Technology in Therapy” (DeCurtis & Ferrer, 2011) as a guide to help to maximise interaction and communication with the device or app in everyday situations. The 7 Ps are:

  1. Preparation: What is the rationale behind using an app versus using actual books/toys?
  2. Participants: Consider characteristics of the child using the device/app
  3. Parameters: What is the appropriate amount of time for the child to spend using the device?  Might the device interfere with naturally occurring communication at times?
  4. Purpose: What is the advertised purpose of the app? How can this app meet a child’s goals (by means of this purpose or using the app in an alternative way)?
  5. Positioning: How and where should you position the child and/or yourself to maximise interaction and communication?
  6. Playtime: How will you and your child experience shared enjoyment with the app?
  7. Potential: How will you extend and expand the learning gained from using an app to real-life experiences and to support future learning?

For more information on “The 7 Ps”, see http://pampclub.org/site/2011/07/01/maximizing-mobile-technology-with-toddlers-preschoolers .

Managing Time with the Tablet

As with all exciting developments comes caution.  Learning and interacting through technology alone may not always provide everything a child needs for development; variety of learning opportunities should be encouraged.  Many parents, however, have discussed how it can be difficult to limit time with technology.  The National Autistic Society (www.autism.org.uk/technology) suggests ways to manage the amount of time and quality of time a user spends with portable technology.  The suggestions include:

– Use the child’s routine to make the technology available at specific times;

– Use the battery life icon;

– Use an online timer;

– Use different coloured cases when using the device for different purposes.

Technology for Social Connection

Social media such as Facebook and Twitter and online communities are increasingly used as a means of staying connected with friends and families, creating new relationships with like-minded individuals and exploring topics and dilemmas in an undisclosed manner.  The face-to-face element of social communication can be eliminated in communication via technology.  For some individuals for whom initiating and maintaining conversation can be a daunting task, social media can allow a greater sense of control over the conversation, more time to process what has been ‘said’ and what to ‘say’, and avoids the need to process the non-verbal messages that come with face-to-face interactions. Within the literature on the use of technology by individuals with ASD, the themes that emerge relate to the sense of empowerment  and social connection experienced by people using technology as a medium for communication as well as the voice given to this community (Byrne, 2013; Davidson, 2008).

“Technology doesn’t mean sitting alone in a darkened room any more, and the line between technology and ‘real life’ is disappearing” (NAS, 2015, www.autism.org.uk/technology).

‘Cyber safety’ is an important element of any online activity. It is critical that internet users are aware of the dangers that exist when talking online and learn to be cyber safe.

Technology and Innovative Practice

Advances in technology also provide a challenge to the teams working with individuals with communication needs and their families.  Many practitioners are involved in innovative practice using technology.  An example of this can be found in the work of The Irish Stammering Association, which runs an online support group for teenagers who stammer.  Callum Wells, Speech and Language Therapist, explains below how the online group works including feedback from participants:

Irish Stammering Association runs a monthly online support group for teenagers who stammer. The group aims to provide a place for teenagers who stammer from all over Ireland to meet, chat and share experiences online. The group uses Skype to connect to a video conversation. The group is facilitated by speech and language therapists but the young people discuss topics of interest to them. The group was established in early 2014 and members hail from various parts of the country. Feedback from members has been positive: “I get to talk to people and I don’t [need to] think about my speech”, “I’m going out of my comfort zone…it’s a good thing and helpful” and “the call reminds me about techniques”. As a group facilitator, I have enjoyed being part of the discussion on stammering and have been impressed by the willingness of people to share experiences and support each other. A variety of topics have been discussed ranging from stammering to X-Factor contenders, which allowed for a more free-flowing and fun conversation. I hope that more young people from different parts of the country will participate in upcoming groups and that they will be empowered from group support.

Callum Wells’ contact details: mail@stammeringireland.ie

Final Thoughts …

Advances in technology have brought new opportunities to support, develop and enhance communication skills.  This technology may be life-changing for some families but it is rarely the answer to all the communication needs of an individual.  Communication is by definition an interactive process where messages are sent between a speaker and a listener.  The listener is vital to the further development of communication skills, even with the addition of a device or app.

References:

Alzrayer, N., Banda, D., & Koul, R., (2014) Use of iPad/iPods with Individuals with Autism and other Developmental Disabilities: A Meta-analysis of communication Interventions

Bellini, S., & Akullian, J., (2007) A Meta-Analysis of Video Modelling and Video Self-Modelling Interventions for Children and Young People with Autism Spectrum Disorders, Exceptional Children, 73, 261-284

Beukelman, D.R., & Mirenda, P. (2005) Augmentative and Alternative Communication; Supporting Children & Adults with Complex Communication Needs (3rd Edition) Baltimore: Paul H Brookes Publishing Co.

Byrne, J., (2013) Autism and Social Media: An exploration of the use of computer mediated communications by individuals on the autism spectrum, University of Glasgow Chancellor’s Fund, Student Project Report FINISH THIS REFERENCE WITH WEB PAGE

Cafiero, J. (2005) Meaningful Exchanges for People with Autism; An Introduction to Augmentative and Alternative Communication, (MD: Woodbine Inc

Cafiero, J. (2008) Technology Supports for Individuals with Autism Spectrum Disorders, Technology in Action, 3, 3, 1-12

DeCurtis, L. L., & Ferrer, D. (2011). Integrating mobile technology using a family-focused approach. CSHA Magazine,41, 1, 10–11, 25.

Howard, S.C., Laubscher, E.H., Schlosser, R.W., Flynn, S., Sorce, J.F., Abramson, J., (2012) Applying Technology to Visually Support Language and Communication in Individuals with Autism Spectrum Disorders, Journal of Autism and Developmental Disorders, 42, 1228-1235

Kagohara, D., et al (2013) Using iPods and iPads in teaching programs for individuals with developmental disabilities: A systematic review, 34, 147 – 156

Mirenda, P. (2001) Autism, augmentative communication, and assistive technology: what do we really know? Focus on Autism and Other Developmental Disabilities, 16, 3, 141- 151

Author Bio

Clare Hudson is Speech and Language Therapy Manager at St Paul’s Hospital and Special School, Dublin.

Geraldine McCabe details her experience of how the Irish education system is failing our children with Intellectual Disabilities. This article was originally a submission by Geraldine McCabe to the UN Day of General Discussion (DGD) on the right to education for persons with disabilities, held on 15 April 2015, at Palais des Nations, Geneva.

  • Geraldine McCabe writes to the United Nations about Inclusive Education.
  • Her daughter Shannon has Down Syndrome.
  • Geraldine sees difficulties for children with special needs in getting the opportunity to develop and contribute to society.
  • Shannon wasn’t allowed to take part in regular activities in school.

Introduction

My experience relates to my daughter Shannon- Shannon has Down Syndrome and her experience highlights the difficulties children with special needs have in getting the opportunity to develop and contribute to society.

My experience with Shannon is that the school system is unable to see past her condition to the vast wealth of skills and qualities that she has to offer, and that her school has limited opportunities for her by:

  1. restricting the manner in which our daughter could best participate in her Junior Certificate;
  2. refusing to let her take part in Transition Year with her peers;
  3. allowing her only to attend school on a part time basis, thus in effect suspending her;
  4. giving her access to Physical Education for only the last five weeks of the school year;
  5. never allowing her to attend extra circular activities within the school environment;

Children with special needs have a lot to offer, but education and related organisations frequently do not give them the opportunity to either develop the skills, or to get the qualifications, that they need to succeed.

Supporting The Child

One of the main purposes of education is to prepare children for adult life. To me, this means providing the child with:

  • the opportunities to get qualifications they need to succeed
  • the opportunities to develop and expand on the skills and qualities

that they need to succeed

  • the belief that they can make a contribution to society
  • the motivation to make a contribution to society

Providing the child with the opportunities to get the qualifications they need to succeed

A child may have a condition, but they should not be defined by that condition. They have so much to offer and this must be recognised. Frequently their condition, which is one aspect of them, eclipses everything and they do not get the opportunities to study/train for particular qualifications or they do not get the support they need to achieve these qualifications.

Unfortunately, factors such as the cost of providing these supports dictate the decisions a school will make when offering education to children with special needs. The child can be the casualty of this, when they do not get the opportunities that they need, to get the qualifications that they need, to meet their career goals.

Providing the child with the opportunities to develop and expand on the skills and qualities that they need to succeed

As mentioned, children with special needs are defined by the conditions that dictate that  they have special needs. These children can tend to be overlooked in education and training and may not get the opportunities needed to reach their potential. Children with special needs are like all children. They have strengths – these strengths need to be built on and celebrated. The child needs to be defined in terms of their strengths. Often it is not the case.

The child will have weaknesses. Schools need to take note of these weaknesses and rather than treat weaknesses as something negative, schools need to focus on weaknesses as opportunities for development. There may be factors that may work to threaten a child’s development. Identifying these factors is a positive thing but in the schools and training systems, staff can tend to use these potential threats as an excuse to give up. This has certainly been my experience. These factors need to be seen as barriers to development.

But like many barriers in life, there are ways to overcome them. Barriers should not be used as an excuse for giving up. Unfortunately my experience is that they do.

Providing the child with the belief that they can make a contribution to society

Every child has so much potential. However, many professionals in education do not see past the child’s condition, whatever it might be. The child must have belief in themselves. Their self-belief needs to be nourished, and they must be helped to realise that they have so much to offer. This self-belief is a very fragile and vulnerable thing. Staff in education play an important part in making sure that this seed of self belief is nourished, and that the child sees that he or she has a lot to offer.

Providing the child with the motivation to make a contribution to society

Following from the previous comment, the child needs to believe that he or she can succeed. Children can, if they are given the belief and faith. The school must have faith in the child. If it doesn’t, the child will not. Unfortunately, this was the case with my daughter. She has had countless barriers placed in front of her. Countless professionals in the education system have written her off and it is an ongoing struggle to offset the damage caused by this.

Observations on the Southern Irish Education System

In addition, I would like to make the following points about the infrastructure/system behind all this:

  1. There are many supporting organisations whose overwhelming concern is self-interest
  2. I would question the value for money benefit of these organisations
  3. The complaints/advocacy system does not work
  4. The system of support has ground to a halt in red tape
  5. The financial and emotional cost of advocating for your child is overwhelming

There are many supporting organisations whose overwhelming concern is self-interest, and there is no accountability or transparency from within the state system.

Indeed it appears that the Irish state are prepared to spend a huge amount of resources to make sure that a wrong continues to be a wrong rather than reviewing and amending  systemic failures within in the system. This of course ensures that civil servants will continue to be kept employed within a dysfunctional system, and that voices like my daughter’s will continue to be ignored and disregarded. After all, who really cares about the voice of a person with special needs, when it comes to their education? Inclusion is working after all!!!!

I do note that there are organisations set up to support children with special needs, but due to the nature of their funding, these organisations are more concerned with using their resources to get continued funding. There is no stability in this sector. Staff are recruited on short-term contracts, and there is no continuity. This has a very adverse knock-on effect on the quality of service delivered.

I would question the value for money benefit of these organisations

Vast amounts of money seem to be spent on services, but none of these resources seem to cascade down to the service users. Service users need career advice. They need to access training. They need to be listened to, and they need to be assisted to believe that they have a lot to offer. This does not happen.

The complaints/advocacy system does not work

I have tried to address deficits in the delivery of services, and it is very clear to me that the systems do not work. They are weighted in favour of the system, and the people in the system know how to use the system to fend off complaints. I believe that the only way forward is to streamline the system of educational supports, and simplify pathways leading to the related supports, to foster an individual pupil-centred approach.

However, my experience tells me that this approach will not take place in my lifetime and for children like my daughter, the failure of the education system has defined her – instead of being a meaningful member of her community, she is condemned to always being viewed as an outsider, with no currency value.

The system of support has ground to a halt in red tape

Parents wishing to make a complaint are made to jump through administrative hoops. Staff use jargon, procedure and avoidance of responsibility to stop or slow down the complaints process.

The emotional cost of advocating for your child is overwhelming

When a parent makes a complaint, he or she is fighting a system, and can be overwhelmed by the sheer size and scale of the system. It’s a case of David versus Goliath, but unlike this tale, it is the gargantuan system that inevitably wins. Parents are eventually worn down from fighting the system, and make a pragmatic decision to give up.

Conclusion

Schools and training organisations have a pivotal role in ensuring that children are prepared for adult life. This means we must provide children with the opportunities to get qualifications, to develop and expand on the skills and qualities that they need to succeed, and the belief and motivation to make a contribution to society.

Also, we need a re-pointing of these organisations’ direction and motivation, to place the student at the centre of their priorities, and improve value for money. We must overhaul or replace the complaints/advocacy system, and remove the bureaucracy and red tape surrounding support systems. The financial and emotional cost of advocating for your child is overwhelming for parents, and in this regard, schools ‘could do better’. A lot better.