SBHI welcomes Workplace Relations Commission decision

In respect of a recent legal case, the details of which have been published here:  


SBHI welcomes the decision of the Workplace Relations Commission which found the wearing of facemasks as direct discrimination on grounds of disability pursuant to Section 3(1)(a) and 3(2)(g) of the Equal Status Acts 2000-2015.

The management of the Secondary School applied an ill-conceived and discriminatory policy in relation to the wearing of facemasks and did not consider the full impact of their actions upon the child.

SBHI worked very closely with the family and exhausted all avenues before the family were left with no other recourse except to take the management of the Secondary School to the Workplace Relations Commission.

SBHI met with the school, advised the school that their actions were traumatising the child, the parents wrote to the Board of Management and we, SBHI, wrote to the Board of Management to encourage them to cease wearing facemasks due to the impact on a very vulnerable child in their care to no effect.

When actions, policies, and procedures are put in place that have the potential to affect the most vulnerable of children, consultation with both the child and their family/carers is vital.

We welcome the findings of the Workplace Relations Commission and hope that this does not occur again in the future for any of our members with spina bifida and/or hydrocephalus.


The 8th Amendment

The 8th Amendment

Spina Bifida Hydrocephalus Ireland (SBHI) acknowledges the conversation surrounding the expected upcoming referendum on the Eight Amendment. At SBHI we are committed to campaigning for everyone to be given consistent and accurate information when given a diagnosis of spina bifida and/or hydrocephalus in pregnancy.

We ask all Healthcare professionals who relay a diagnosis to:

  • Choose your words carefully and with compassion. This will be a difficult day in their lives and your words and approach will likely be remembered.
  • Acknowledge your level of understanding around spina bifida and/or hydrocephalus. What you know may not necessarily reflect the current advances in medical care. If you don’t know, let the parents know that you will find more information, or refer them to someone who can assist. This will be a difficult day in their lives and your words and approach will likely be remembered.
  • Be mindful not to infer blame; it is no one’s fault. While we know a number of factors that might be associated with SB, we really don’t understand all the genetic and environmental factors and interactions that cause SB/H.
  • Direct families to Spina Bifida Hydrocephalus Ireland (SBHI).

SBHI is a national disability organisation supporting over 2000 people across Ireland. SBHI has many resources that are useful and informative to families. Parents, their families, or healthcare professionals may contact our Family Support Team at any time. The role of the Family Support Team is to guide and support parents during challenging times.

Whatever the outcome of the expected referendum on the Eight Amendment, the guidance outlined above should be implemented for the benefit of anyone receiving a diagnosis during pregnancy.

Twenty-nine Irish charities receive donations from The Hospital Saturday Fund



Twenty-nine Irish charities received donations from the Hospital Saturday Fund at a special reception in Dublin recently. In total, €134,500 was donated to the medical charities and organisations at the event, which was hosted by Ardmhéara/Lord Mayor of Dublin, Mícheál Mac Donncha.

Among the beneficiaries was Chronic Pain Ireland which received a donation to help support vital workshops on pain self-management techniques. Cystic Fibrosis received a grant towards their independent living group and DEBRA Ireland’s grant will be used to provide a weekend camp for those with the genetic skin condition EB.  Also receiving grants were Fighting Blindness to purchase a RetCam scanner machine and the Irish Motor Neurone Disease Association will use their grant to fund specialised communication aids.  A grant was made to Dublin Wicklow Mountain Rescue Team to support their important work as well as the Kevin Bell Repatriation Trust to assist families of those bereaved overseas.

Speaking at the reception, The Lord Mayor celebrated the extraordinary work of all the charities receiving donations from the Hospital Saturday Fund.  Ardmhéara/Lord Mayor of Dublin, Mícheál Mac Donncha, who nominated St Francis Hospice as his chosen charity, remarked that this donation means that the hospice will now have the benefit of a special therapeutic bath for use by the patients in the specialist palliative care unit and this will provide pain relief and comfort to those patients.

Paul Jackson, Chief Executive, Hospital Saturday Fund said: “We are delighted to continue the tradition of supporting many charities in Ireland, many of which are less well-known. The Hospital Saturday Fund is honoured to support the efforts of such deserving charities and help in some way towards the exceptional, tireless work that they do.  We are delighted to have increased our grant making funds to €1.4 million in 2018 and this is an increase of 100% over the last five years”.

In 2018 the Hospital Saturday Fund will give €1.4m in donations and grants to medical charities for care and research, hospices and hospitals across the UK and Ireland. Assistance will also be given to individuals whose illness or disability has caused financial difficulties.

The following Charities received grants at the event:

Alzheimer Society of Ireland

Aspire - Asperger Syndrome

Aspire Ireland

Barnardos Republic of Ireland

CASA Breakhouse

Cheshire Ireland

Chronic Pain Ireland

Cleft Lip and Palate Association

CRY Ireland - Cardiac Risk in the Young,

Cystic Fibrosis Ireland

DEBRA Ireland

Dublin Simon Community

Dublin Well Women Centre

Dublin Wicklow Mountain Rescue Team

Helium Arts

Huntington's Disease Association of Ireland

Irish Community Rapid Response

Irish Motor Neurone Disease Association

Kevin Bell Repatriation Trust

Lauralynn - Ireland's Children's Hospice

Look Good Feel Better Ireland

MS Ireland

Neurofibromatosis Association of Ireland

Oesophageal Cancer Fund

Our Lady's Hospice & Care Services

Spina Bifida Hydrocephalus Ireland

Temple Street Foundation

St Francis Hospice (Lord Mayor’s Nominated Charity)

Fighting Blindness (Expression of Thanks speech)



Weather Warning February / March 2018

Weather warning Tuesday 27th February – Saturday 3rd March 2018

This advice is offered to all service users and members of Spina Bifida Hydrocephalus Ireland due to the weather warning currently in place from Met Éireann -

If you are unsure of what steps to take in terms of keeping warm and eating well, please visit the following website for more advice:

If the offices of SBHI have to be closed this week, all staff will still be working from home or an alternative venue during normal office hours (Mon to Fri 9am-1pm and 2pm-5pm). This means that you can still contact staff, including the Family Support Team via their usual contact details: SBHI will publish notices if our offices are closed.

If you need to contact a member of staff and are struggling to get through, please call Louise Healy, Respite and Recreation Manager, on 085 711 9087 

The following list has been suggested by SBHI staff to assist where relevant:

  • Be sure to stock up on enough spare water, during the last significant snow fall in Ireland some areas lost their supply for some time
  • Have enough food in the house 
  • Make sure you have enough fuel to keep warm (if you have a heater that requires such fuel)
  • If you need medicines or continence devices, make sure that you have enough to last for a few days
  • If you need assistance in any kind of emergency, please call the emergency services on 999 or 112

Spina Bifida Hydrocephalus Ireland (SBHI) is 50!


Spina Bifida Hydrocephalus Ireland (SBHI) is 50! 2018 marks 50 years since the national association was formed and everyone is looking forward to a celebratory year ahead.

SBHI is a national organisation supporting more than 2,000 people who know spina bifida and/or hydrocephalus to be a reality in their lives.

During the 50th Anniversary year, SBHI will continue its work of supporting thousands of individuals and families across Ireland by delivering unique services which ensure that everybody affected receives the best support available to them. This is achieved through a team of Family Support Workers, a Youth and Respite Team, Education Training work, and through the Resource Centre, Clonshaugh.

Together these professionally trained staff offer comprehensive support to everyone living with spina bifida and/or hydrocephalus across Ireland.

In addition to this core work, plans are afoot to mark this milestone Anniversary and celebrate the achievements and development of SBHI over the past 50 years with a number of events.

As this is a ‘Golden Anniversary’, a gold version of the SBHI logo will be launched which will be used in all promotions and publications throughout the year.

The Annual Conference and AGM, being held from 25th to 27th May in City North Hotel, Gormanstown will afford the Board of Directors, members, staff, and volunteers a wonderful opportunity to look back over the past 50 years, celebrate the present, and look forward to the future.

SBHI is fortunate to have wonderful people who come forward to volunteer to fundraise year after year. One of the current charity supporters, Stephen Martin of the Marathon Man to Ironman Challenge, is organising a 50th Anniversary Family 5k & 10K Fun Run in Corkagh Park on Saturday, 30th June. More information on this event will follow.

Also throughout the year, the hardworking officers in the eight branches around the country – Donegal, Mayo/Leitrim/Roscommon, Louth/Meath, Tipperary, Dublin, Kildare, Wicklow, and Wexford – will host a series 50th Anniversary fundraising events.

SBHI is extending the established golf fundraising efforts for 2018. The annual SBHI Packie Bonner Golf Classic will be complimented by an additional qualifier event. The SBHI Golden Anniversary Golf Classic will also be hosted by SBHI Patron and Irish goal-keeping legend Packie Bonner at Palmerstown House Estate Golf Course on Thursday 16th August.

On Thursday, 16th August, 25 teams, the winners of Golf Classic Qualifiers held in clubs all over the country, will compete over 18 holes of golf followed by an evening meal and presentation.

The following day, SBHI will return to Palmerstown House Estate where 32 teams will take their opportunity to compete to win the annual classic and enjoy an evening meal, charity auction, raffle and presentation. Entry for the Packie Bonner Golf Classic will open in February.

To keep updated on our 50th Anniversary celebratory plans and events throughout the year, log onto or follow us on Facebook, Twitter, and Instagram on @SBHIreland.



Determined to overcome all obstacles to find a job


38-year-old Teresa Ryan, who lives with spina bifida, is determined to overcome all obstacles to succeed in her ambition to work in a secretarial job.

“I am not going to give up until I secure employment in a secretarial position,” says Teresa, who lives in Enniscorthy, Co. Wexford.

Teresa has always enjoyed learning and has spent her adult life in continuing education. A past pupil of St Senan’s National School and Colaiste Brid and Enniscorthy Vocational College, she says that she always liked and enjoyed school.

“I really liked going to school, I enjoyed learning and making good friends. I never encountered any problems or impediments being a wheelchair user and I had really positive experiences in school,” she says.

“I passed the Leaving Certificate Applied and I was really pleased with my results.”

After school, Teresa worked in Enniscorthy Community Workshop for three years and then completed a number of computer courses. Other work experience, including an eight-week stint in the 1798 Visitors Centre in Enniscorthy, sorting filing in the office, renewed her interest in secretarial work.

This month will see Teresa completing a one-year course in computers with the Irish Wheelchair Association (IWA) in Gorey which she says has been a very positive experience for her.

“While it was a computer course, we did a bit of everything and even went on days’ out. It has been great experience and has really boosted my confidence and my expertise,” she says.

“It has given me the confidence to sign up for a higher skills course in computers and maths. This is another one-year course being run by Enniscorthy Community Workshop and my goal is at the end of this course, I will secure a job.

“I really want to work in an office as a secretary but it is so difficult to find work, not because I am not capable of doing the work but because so many buildings are not accessible.

“Inaccessible buildings really limits the number of jobs to which a wheelchair user can apply for. Every building should be accessible and this is a regulation which really needs to be brought into being and rigorously enforced.

“I am enjoying all the continuous education that I am doing, however, I am doing it all with the aim of getting a job and I will not give up until I get a secretarial job.

Striving to be an independent boy


Five-year-old Éanna Doyle, who is living with spina bifida and hydrocephalus, is not yet attending mainstream national school, however, his teacher at Scoil Mochua Special National School in Clondalkin believes that he will in the future.

Éanna, who is from Sallins in Co. Kildare, is doing really well with his mum Caitriona praising Scoil Mochua for being an “amazing” educational facility.

“The supports are there to give him everything he needs and he is so happy. He has his teacher Anthony, three SNAs, a nurse to do his catheterisation, a physio, and an OT for speech and language,” says Caitriona.

“If he was going to mainstream school now, we would be constantly taking him out of class for all these appointments.

“Also, there are only six in the class, so it is pretty much one-to-one care and attention.

“If Éanna had started in mainstream school this year, there is no way he would be able to cope with the class size and noise levels.

“In Scoil Mochua, every child is at different stages of development and they are all being looked after individually to their level of development as well as a group.

“While he is not ready for mainstream education yet, his teachers think he will be able to get to mainstream at some stage - maybe not this year or next year but at some point in the future.”

Accessing Central Remedial Clinic (CRC) services since he was six weeks old, Caitriona says that Éanna was “automatically in the system”, so he was accepted into playschool for two years before starting in Scoil Mochua last year.

“He loves it, he is very comfortable going into school as he knows everyone,” says Caitriona.

“He is becoming more independent in himself and he wants to be independent, he wants to be able to do things for himself.

“Scoil Mochua encourages independence also; he is told to hang up his coat and put his lunch away and do things for himself.”

Caitriona says that it is very encouraging that education can be such a positive experience even if your child has to attend a special school. While the majority of children with spina bifida go to mainstream schools, she says that for children like Éanna, who needs a little extra help, it is great to have access to education in a special school.

While Éanna is striving to be an independent boy, he is quite accepting that there are things that he will not be able to do.

“He knows now that he cannot walk. He wants to walk and run and asks why he cannot and when it is explained to him he accepts it without crying or getting upset,” says Caitriona.

“I try not to look too far into the future, I find that would be hard. I take each day as it comes, that is the way we – Éanna’s dad Mark and I -  have always done it. I deal with the present and let the future look after itself as I do not know what kinds of things will happen in the future.”

Éanna was Caitriona and Mark’s first baby and they found out when Caitriona was 20 weeks pregnant that their baby would have spina bifida and hydrocephalus

“At about 32 weeks, we were told that he would need a shunt as his hydrocephalus was on the severe end of things.

“Éanna had surgery the day after he was born for back closure due to his lesion and had VP shunt inserted,” says Caitriona.

“We got our heads around Éanna’s diagnosis very quickly, we took a few days out of work to get our heads around the diagnosis and come to terms that our baby was going to have special needs. We decided to think positively and get on with things.

“Éanna was in and out of A & E for the first few months of his life for different reasons. We got him home from hospital two weeks after he was born and the next day he was back in hospital as his back was leaking cerebral spinal fluid.

“That happened a few times and he had UTIs and seizure-type activity where his legs would continually jerk for up to two days at a time for a number of months. The doctors never got to the bottom of this but thankfully it eventually stopped.

“All in all, we have been very lucky Éanna as he is still on his first shunt. He had quite a high lesion so his mobility is not good.”

Éanna has Agensis of the Corpus Collosam which means that the area of the brain which connects the two hemispheres is missing; an under-developed cerebellum; a cyst on the back of his brain and Chari Malformation.

“He cannot sit unsupported which would be unusual for kids with spina bifida. I think the problems in his brain, especially his under-developed cerebellum contributes to his balance issues and is the reason he cannot sit,” says Caitriona.

“I do not know if he ever will be able to sit unsupported. We travel to Limerick every week for private physiotherapy and his upper body strength is very strong; he is definitely coming on.”


Proud and happy to be living life by the mantra of 'no limits'


When Ciara O’Donnell stopped comparing herself to other people and gave up trying to ‘keep up with the Joneses’, she found that feelings of upset and frustration just disappeared.

Judging herself by her own standards and capabilities rather than other people’s means that Ciara can now calmly and happily do what she wants to do in the stress-free knowledge that what she chooses to do, she will do well.

“I have a reputation for not listening when I am told ‘no’. I am incredibly stubborn, if I want something badly enough, I will say that I am going to do it,” says Ciara.

“However, I have to believe that I can do it and I have to work for it.

“I might have to work twice as hard to learn skills or do what an able-bodied person is doing. Now, unlike in the past, I take my time and do it – I now longer beat myself up.

“I used to compare myself to other people and say: ‘why can I not do that?’

“When I did my degree in social care, I could not do third year, this confused me as to why I was not as able as others. But I have my diploma and that is where I needed to be, that is my level of achievement and I had to be okay about that.

“So, I stopped beating myself up. I can always go back and do a degree in my timeframe if I want to,” she says.

“As a person with spina bifida, I also have some other medical issues which affect me from time to time. It can take longer to do things like getting ready in the morning sometimes, if I am unwell.

“That can be frustrating at times. But the way to look at it is, if you mind yourself, take time to work things out in your own time, you will make life easier for yourself.

“Just because you can do something does not always mean it is the best thing for you. I thought I had to keep up with everyone else. Now I do what I want to do and know what I do I will do well.”

Ciara has just proven that she can do what she wants to do – and do it well – as she has just qualified as a make-up artist.

“I think confidence is an issue for a lot of people with disabilities and from a woman’s point of view, I think some days we have enough to deal with medically without being conscious of bad skin or other things that can be camouflaged if needed.

“My hope is to work with women who have disabilities in my spare time in the future. “

Ciara, who is from Arklow, was born with spina bifida and hydrocephalus. She took part in a trial at birth which she says was relatively successful for her hydrocephalus. While, she still retains elements of hydrocephalus she feels that this condition does not impact on her life.

She attended mainstream primary and secondary schools and having completed a secretarial course after her Leaving Certificate, secured employment with Wicklow County Council.

“I am now a Grade 4 Assistant Staff Officer - I was promoted in January – I work in the law department as a legal secretary and carry out supervising duties as well,” says Ciara.

“I work Monday to Friday, but take Wednesdays off from a health point of view and to manage doctors’ appointments.

“I find that this is working really well for me. The local authority facilitates me wherever they can. We have a disability officer onsite and she is very good.

“With older buildings, sometimes very little can be done from an accessible point of view and there are budget restrictions. There was staff training recently but the building was not accessible so I have been told in the future I will receive one-to-one training on site.

“Wicklow County Council is doing its best and management are learning. I am the only wheelchair user in the building, there are people with other disabilities such as sight and hearing impairments. The County Council has always maintained its 3% quota of staff with a disability which is good really.”

Living her life by adopting her parents’ philosophy of ‘no limits’, Ciara is proud that she has accomplished a lot in her 37 years.

“I am happy with what I have done. Now I am older I have to decide what I want as I cannot have everything -  I do not have the energy anymore!” she says.

Apart from her work, the things that Ciara likes to invest her energy into is spending time with her family and many friends; pursuing hobbies and enjoying herself in her spare time. She loves to cook, go out for coffees, listen to live music. Ciara also loves animals and enjoys spending time out with her two dogs.

She says she cannot stress the importance of her parents and friends enough in terms of their love, support and friendship, and the happiness and joy they bring to her life.

Learning to drive was the biggest link to her own independence and Ciara enjoys getting out in the car for a spin and seeing where she ends up!

Living independently in her own apartment since 2005, Ciara met her husband Keith on a blind date. They were going out for about a year when Keith moved in with Ciara and they got engaged and married a couple of years later.

“We bought a house the week after we got married, the whole place had to be adapted which took about two months to complete.

 “Panic had set in at times as I was worried we wouldn’t find a suitable place that worked for both of us. I needed a bungalow and they are in short supply! It was a busy time but it all worked out in the end and we are very happy over two years later.”

Overcoming the negative and moving to a positive head space


It is vital for the well-being of people with disabilities that those without health issues take the time to understand and accept those who do, 29-year-old Majella McCarthy believes.

Majella, from Dunmanway in west Cork, lives with Hydrocephalus and says that she finds it very frustrating when people display a lack of courtesy and understanding towards a person with a disability.

“I find learning very hard as it is difficult for me to retain information – I am not as fast as others – and a good few people do not include me in things,” she says.

“Maybe it is not always because of my Hydrocephalus, it could be to do with my personality, however, more people need to understand the situation with people with health issues and disabilities and be more inclusive.”

Loneliness, isolation and negative thoughts about health issues can lead to people with disabilities withdrawing into themselves and shutting themselves off from social interaction.

Majella feels that it is very important for a person’s mental health to try and reach out and talk to someone when they start feeling like withdrawing.

“But they have to have someone they feel they can reach out too, so that it why is it so important that people with no health issues accept those who do,” continues Majella.

“You can only overcome the negative and get back to a positive head space by going out more and doing things. I am lucky that I have a friend who is close to me and will ring me and make me come out and talk and do something like go for a walk.”

However, Majella was not always as positive and had to work hard to accept her health issues. She was frustrated and angry and found it hard to accept how life had turned out for her.

“I am getting slowly to a place where I think maybe things are actually not so bad for me,” she says.

“I am slowly realising that there are a lot of people out there who I used to think have it all, but behind closed doors they have not.

“I have thought that for years illness ruined my life but my mother Nora has tried to tell me that I am a miracle to have lived.

“I have learnt to deal with my health problems as best I can. Sometimes I think I could be much worse off, other times I think I could have been spared some of these problems.”

In doing the best that she can, Majella has recorded great achievements in her life by passing both her Junior and Leaving Certificates despite her difficulty in retaining information. And she is currently writing a book on her life journey which she plans to get published.

She has learned how to drive and is enjoying the great independence that having her own car is bringing to her life. She drives to and from her part-time job as musical therapist in a nursing home in Clonakilty.

“I am there over three years. The people I work with are lovely and friendly. The patients look forward to me coming. I play the accordion and violin and sing for them and so many times they tell me how much I brighten their day.

“Working has given me confidence. I have learned how to stick up for myself, I have become more independent.

“I have learned how to converse more with people. I realise that I am wanted and have a purpose in my life. I am so grateful I have a job that I enjoy.

I have a habit of comparing myself to others like my twin brother Daniel who is in Australia but since I joined SBHI I am seeing things differently.

“I have learned that my negatives in life must be turned into more positives by me.

“We have to try to think positively and plod on. It is so easy to feel hard done by in life. Life can be difficult for everybody in so many different ways.”

People with disabilities just want a fair crack at the employment whip


When Gerry Maguire joined the civil service 36 years ago there was a quota to employ 3% staff members who have a disability. The target is now to bring that quota up to 6% within the lifetime of the current government.

“This does not sound like a lot, but we are trying to get as many people as possible with a disability into the workforce for the first time, or back into the workforce,” explains Gerry, who is a Special Adviser to Minister Finian McGrath, TD.

“A lot of people with a disability are concerned that they will lose benefits if they take up work, trying to make sure that they are informed and know that they will not lose benefits like their travel pass.”

Gerry, who lives with spina bifida, says that the Government must also communicate to employers that there are grants available to accommodate people with disabilities and to encourage employers to take people on with disabilities.

“I said to the Taoiseach recently that it is good that we now have a Disability Inclusion Strategy. It is good to have it but changing employers’ mind-set is a totally different thing and no strategy is going to do that,” he says.

“That can only be done by giving people with a disability a chance.

“I am conscious of the responsible position I have as I have had to prove myself all through my life – some people thought I got the job as Special Adviser because of my disability, not because of my ability.

“There is still that mind-set after all these years. I have to work on changing people’s perception; getting them not to see the disability, but to see the ability - that is the key and a lot of work needs to be done to achieve this goal.

“This is something which we, as people with disabilities, need to work on ourselves. People ask me when they are applying for a job do they need to say have a disability.

“I respond that it is a personal choice, however, why go in on the back foot, letting employers have the option to be prejudiced before they even meet you.

“There are grant facilities available if employers can be bothered, but it seems easier to take an able-bodied person on even if they are missing out on an incredibly talented person with a disability.

“So many people with disabilities just want a fair crack at the whip and to be given a chance.”

Working continuously since he was 19, Gerry says that he has not experienced the feeling of frustration of not working, however, he can understand that it must be terrible.

“Working puts money in your pocket and gives a sense of value and of pride,” says Gerry.

“The first time I brought home in a pay packet to my parents I was putting money into the family pot for first time. I was playing an active role in the family and I had a great sense of pride in contributing to my family.”

In 1981, during UN Enable – International Year of Disabled Persons the civil service ran a competition for people with disabilities to apply as clerical assistants.

“I had been applying for jobs since doing my Leaving Certificate in 1979 and was getting sick of getting refusals, some of which I knew were purely on my disability, so I thought this was a great chance to get a job,” recalls Gerry.

When he arrived at the exam centre, he realised that thousands of people, in centres all over the country, were applying for just 40 jobs. Gerry did get called for interview and was asked if he was to get the job, what kind of special exemptions would be needed to accommodate his disability.

“I got really thick with them, saying that I went through 12 years of school without exemptions so why would I need them now,” says Gerry.

“I thought I had screwed it up but then I got word that I has secured one of the positions and I was thrilled.

“I was appointed to the Department of Health on 1st April 1981 as a clerical assistant. There was an embargo at the time, so it was eight years later before I got a chance of promotion to clerical officer, then executive officer, then higher executive officer.

“Last year the Minister for Disabilities was looking for a special adviser and I put in my CV. I thought nothing more of it, then I got called by a HR company for an interview to whittle the competition down to three or four candidates.

“A couple of weeks later I was told I was one of the four being interviewed by Minister McGrath and then on 1st September 2016 I was offered the job.

“I was told that the reason why I was given the job is that I came across as someone who would not take any nonsense from anyone!”

In his role as Special Adviser, Gerry represents the Minister at functions when he is unavailable; attends the weekly Monday meetings of all advisers to discuss the government agenda for week.

With Minister McGrath’s portfolio running across three departments – Health, Justice and Social Protection – Gerry has to fact check more than 100 Parliamentary Questions; attend Cabinet committee meetings and meet with different groups and individuals on regular basis.

“It is a very responsible job, I have to have my facts right all the time. You cannot bluff your way through or you will be found out very quickly,” says Gerry.

“I complain that there is not a lot of time for a personal life, but really I love just love my job.

“There is something about going through Leinster House and Taoiseach’s Department and thinking of the history of the place and the people who went before. You really feel a part of something, of being involved in the machinations of the country.

“Some people think that because I have a disability that I can sort out all problems for people with disabilities overnight. But you cannot solve everything; I have to be aware of the budgetary constraints as we do not have a bottomless pit of money.

“I take a lot of things home with me in my head. I wake up during the night thinking about a particular person’s problem which has been brought to my attention,” says Gerry.

“I do not know if I can change that, but I do not know if I want to change that as it shows I care and I want to do something while I am here in this role - I do not know how long the Government will last and if there is a different Minister, I might not be kept on.”

Gerry says that he feels a sense of responsibility to the people and groups campaigning to have UN Convention for the Rights of Persons with Disabilities (UNCRPD) ratified.

“However, people do not realise the amount of work that is going on in the background to move it forward to try and get the legal processes in place,” he says.

“Other countries have ratified it without the legal processes in place and it is not worth the paper it is written on – I want it to mean something for people with disabilities.

“For example, the Inclusion Strategy has been set up in such a way that it will address things like having to give 24 hours’ notice to Irish Rail with travel plans.

“The Department of Transport recently gave the Minister a briefing saying Irish Rail is bringing it down from 24 to four hours’ notice,” he says.

“They wanted pat on the back for this but I told them when they bring it down to zero hours’ notice, it will be a success - I will call out on it when needs be.”

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