WDN hosts Disability Awareness meeting
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On Thursday June 30th Waterford Disability Network hosted a number of guest speakers in their meeting room on New Street in the City. The event had been intended to take place in Lismore but had to be re-located at short notice due to Covid-19.
Well attended, the meeting had representatives present from many disability groups from throughout the South East including DreamBig Project SouthEast, New Ross Autism, Tipperary Fight for Services & Rare Ireland.
Jo Cregan, WDN Chairwoman, spoke based on her 20 years working for EmployAbility Services. She spoke about both the incentives and barriers for people with a disability entering the workplace and the financial supports for employers.
A short but emotive speech was given by WDN Vice Chair Sinéad Kilcawley on the need to properly accommodate blind and other disabled students sitting Junior or Leaving Cert exams. That morning she had been interviewed on that subject by PJ Coogan of Cork’s 96fm and the previous day by Damien Tiernan on WLR fm. Podcasts of both interviews are available on the WDN Facebook page.
From Family Carers Ireland, Niamh Finucane spoke of the supports she provides for young carers who may be the primary or secondary carer for a parent or sibling. The importance of respite care was made as was supporting siblings of children with a disability.
Having graduated with an M.A. in Social Work last week in UCC Emily Kearns spoke about her thesis which was done in collaboration with Rainbow Club for Autism Cork. She studied children with autistic siblings, an area on which very little research has been done. She made several recommendations on how families should be given advice and support as a whole as presently focus is on the autistic child and then parents with siblings largely forgotten.
The final speaker was David Cullinane TD who spoke of how assessments need to be carried out swiftly but fully so as to best cater for the needs of the person. He also spoke of the Children’s Disability Networks and issues that arise from roles being filled by a mix of HSE staff and staff from the private structure leading to people doing the same work for very different amounts of pay and with different entitlements resulting in many positions being left vacant.
After the speeches there was a wide-ranging discussion with many taking part. One issue raised that demonstrates how persons with a disability are often forgotten is that TFI have begun to take delivery of new train carriages, an investment of several hundred millions of euros. Yet even with the new carriages wheelchair users will still have to phone 24 hours ahead if they wish to use an intercity train to ensure there is a staff member present to bring ramp Romans from platform though this is not needed on trains in Denmark, Germany etc.
All the speeches are available on WDN YouTube channel.
It has certainly been a busy period for Waterford Disability Network which has quickly adjusted to life following the lifting of Covid-19 restrictions.
Waterford Disability Network is a registered charity with Jo Cregan as Chairperson and Sineàd Kilcawley as Vice-chair.
Office manager with Waterford Disability Network Seàn Rohan explains that the aim of Waterford Disability Network is to act as a voice for disability organisations in Waterford City and County. The Network does not represent one particular group but acts as an umbrella group incorporating a variety of different disabilities and is funded by Waterford City & County Council and Waterford Leader Partnership.
Much of the public work of Waterford Disability Network involves lobbying and engaging with political representatives and the local authority in order to create awareness and bring about change. These dealings usually relate to issues impacting people with ‘visible’ disabilities such as access issues for wheelchair users or street hazards for visually impaired people.
These are issues which impact people collectively, however, Waterford Disability Network also deals with people’s concerns on an individual basis. Many people contact Waterford Disability Network by phone, email and via social media in relation to a wide range of individual issues.
Waterford Disability Network held its Autism Opportunities conference on April 2nd in St. Patrick’s Gateway Centre, Waterford to coincide with International Autism Awareness Day. There were a range of speakers addressing issues facing autistic people and highlighting some of the opportunities available to them.
The speakers included representatives from four different organisations, two autistic individuals, both of whom had been diagnosed as being autistic in their early forties, plus two of Waterford’s TDs.
In an interview with this newspaper last year, Seàn and the team at Waterford Disability Network outlined their intention to expand their reach beyond Waterford City and Tramore to incorporate all of Waterford City and County.
“Many Waterford based organisations, including ourselves, are guilty of being called a Waterford organisation, including ourselves, are guilty of being called a Waterford organisation but primarily acting in Waterford City and Tramore,” said Seàn. “People in West Waterford, beyond Dungarvan, often relate better to an organisation if it has Dungarvan in the title so we’re trying to change that perception.”
Expanding their profile and reach into West Waterford remains one of the priorities for Waterford Disability Network which recently joined Dungarvan and West Waterford Chamber in addition to Waterford Chamber.
“Our mandate covers from Passage East to Youghal Bridge so we’re trying to reach as many areas of Waterford as possible,” explains Seàn.
In late April, a Disability Awareness event in Dungarvan was the first such event staged by Waterford Disability Network outside Waterford City. Again, a range of speakers gathered to discuss various issues, with many of these speeches available to view on Waterford Disability Network’s YouTube channel.
One of the main issues of concern for people with disabilities which has been brought to the fore, particularly during Covid-19, relates to transport.
“If you don’t live in a city, transport is a huge problem if you’re disabled,” says Seàn.
“Many rural areas don’t have bus services and, if they do, those buses might not be wheelchair compatible. There are a number of taxi companies that provide a service, but you have to book in advance, as you do with Iarnród Éireann.”
While some wheelchair accessible taxis are available in the city and Tramore area, Seàn says there aren’t any across the rest of the county between the city and Youghal. This presents a lack of individual freedom for wheelchair users, according to Seàn.
Meanwhile work is continuing as part of the ‘Changing Places Ireland’ campaign which promotes the inclusion of Changing Places Toilet Facilities in public places nationwide.
Changing Places Toilet Facilities are different from standard accessible toilets as they provide extra equipment like a hoist and an adult-sized changing bench.
Waterford Disability Network would like to see at least one in Waterford City and one in Dungarvan. Seàn believes the installation of such facilities would hugely benefit Waterford as people who require their use will plan their holidays based on proximity to such facilities.
“Currently, if you’re in Dublin and thinking about visiting the South-East, you wouldn’t go to Waterford, but you would go to Wexford which has such a facility,” says Seàn.
A motion brought before Waterford City & County Council in relation to installing a Changing Places Facility in Waterford was unanimously passed recently. The Council will now examine options for installing Changing Places Facilities in Waterford City and Dungarvan.
“It’s very much needed,” Says Seàn, who would also like to see the inclusion of locations such as Lismore and Ardmore.
Overall, Seàn believes Waterford is very progressive when it comes to disability matters. However, more can be done.
“We’ve had great support from local councillors from all parties and none,” he says, adding that current Mayor of Waterford City & County Council Cllr Joe Kelly has been very supportive.
He believes there is a need for greater education amongst the wider public on the challenges faced by people with disabilities, particularly in relation to parking issues.
“Certain places are no-go areas,” says Seàn. “People are usually good about avoiding disabled parking bays, but parking on footpaths is a huge issue.”
He says this is particularly problematic throughout many housing estates, resulting in wheelchair users being forced onto roadways. The growing popularity of e-scooters is also a significant concern, while dog excrement on footpaths also remains problematic.
“It’s unpleasant for anybody but especially for people who are visually impaired,” says Seàn.
Waterford Disability Network believe it’s important to reward groups which are being proactive in relation to disabilities and, with this in mind, nominations are opening for the Waterford Disability Network/InvincABLE Fitness Inclusion Award.
Entry is open to any organisation that’s voluntary and non-disability specific which can demonstrate the ways in which they have been proactive in being inclusive for people with disabilities such as sporting and drama groups, Tidy Towns, Scouts, and Girl Guides. The winner will be presented with a framed certificate and a cheque for €150.
Last year’s winner of the inaugural award was Bohemians FC in recognition of their successful Football For All programme.
An information and networking event will take place on Thursday June 30th at 7pm in The Red Hall, Lismore, hosted by Waterford Disability Network in conjunction with Surprise Surprise Dungarvan & West Waterford.
This will be the first time Waterford Disability Network has held a meeting west of Dungarvan and there will be a number of different speakers addressing different topics.
Waterford Disability Network is also currently organising a Creative Drama Workshop for children with any type of disability aged 5 – 10. This will be run by a professional with 20 plus years’ experience as a drama therapist.
Seàn would like to see more people get involved with Waterford Disability Network in various capacities.
“Many hands make light work, so we need more people to be involved with us,” he says. “Some people have joined our committee, but others bring expertise in other ways.”
Waterford Disability Network is located at Enterprise House on New Street in the city, courtesy of Waterford City & County Council.
The first monthly Waterford Disability Network Coffee Morning will be held here on Wednesday June 22nd at 10.30am. Lindsey Walsh of RARE Ireland will be present to mark National Rare Chromosome Disorders Awareness Week, but all topics are up for discussion.
“Any disability or support organisation in Waterford wishing to use our office can do so free of charge if they’re a member, and it’s only €20 a year to become a member,” explains Seàn. The services Waterford Disability Network provides to individuals, such as advice and lobbying, are free of charge. Additionally, a wide variety of information, including in relation to government policy, is provided across the Network’s social media channels.
Certainly, the Waterford Disability Network is providing an invaluable service in Waterford and will hopefully continue to be supported in its ongoing attempts to improve the lives of everyone in the locality with disabilities.
For more information on Waterford Disability Network, visit www.waterforddisabilitynetwork.ie, email email@example.com, call 089-4753132 or check out Facebook, Instagram and Twitter @WaterfordDN
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On Saturday 23rd April, Waterford Disability Network’s ‘Dungarvan Disability Awareness Event’ took place in 360 Cookhouse. The information and networking event featured seven speakers, who discussed a range of issues which affect people with a disability, after which there was an opportunity for attendees to network with others who have an interest in disability issues, over a complimentary tea or coffee.
“We felt the event went very well,” explained Seàn Rohan, who organised and chaired the event. “The speeches were very diverse and I’d single out both Katelyn Daly, who is only sixteen years old yet spoke so well, beyond her years, and Cllr Brazil, whose powerful speech made an impact on everyone in the room.”
The opening address was delivered by Cllr Joe Kelly, Mayor of Waterford City and Council. Cllr Kelly has been involved with WDN for many years. He praised their work and highlighted how they are now providing their services across the county, where they had previously been much more focused on the city.
The second speaker was Lyndsey Walsh from Rare Ireland Family Support Ireland. Her daughter suffers with a rare genetic condition called 2q24.2 Microdeletion Syndrome. She described the battle her family had faced in trying to seek a diagnosis and treatment for her daughter’s condition. She also described the work of Rare Ireland and how they help families of children with conditions so rare there is no specific organisation for that condition.
Support from Rare Ireland Family Support can be found on their website rareireland.ie
Next to speak was Ciaràn Delaney, who talked about Jam Cards and how important they are for anyone suffering with an invisible disability. They are simple cards which can be shown on public transport services that are registered with the Public Transport Network, as well as in businesses which have signed up for the scheme, such as McCauley’s Pharmacy, Lidl and Trigon Hotel Group. All staff in those businesses have been fully trained in how to support people with invisible disabilities. The Jam Card app also enables the user to personalise the Jam Card to their specific condition.
For more information or to acquire a Jam Card, please visit jamcard.org or download the Jam Card app from Google Play or the Apple App Store.
The fourth speaker was Sinéad Kilcawley, who is vice chair of WDN. Sinéad’s teenage son has ASD and her teenage daughter lost her vision in childhood. She shared her experiences of seeking support for her family and how having more local support has made a difference for them in more recent years. She highlighted the importance of networking, when seeking support with disabilities.
After Sinéad Kilcawley, 16 year old Katelyn Daly spoke. Katelyn has blindness in the left side of both eyes. She spoke very eloquently about her experiences. She received multiple diagnoses for her symptoms from multiple specialists over the years, and has endured lengthy waiting lists for assessments and treatments. She struggled with obtaining the support and assistive technology she needed in school, simply because she didn’t have a clear diagnosis for her condition. Katelyn mentioned the great support she has received from NCBI, to get the support she needs for her education.
Support from the NCBI can be found on their website, ncbi.ie
Next to address the assembly was Cllr Liam Brazil, who spoke movingly about mental health and suicide. He explained how the suicide of his brother, John, and the associated stigma, affected his own family. He mentioned that people with disabilities are more likely to take their own lives, especially if they were not born with that disability. He also highlighted the fact that one in four people suffer with mental health issues and said how important it is to talk, to seek help and for help to be available.
The final speaker was Cllr Conor McGuinness, who stood in for Deputy David Cullinane, who had sent his apologies, having been called away to the North to help with elections there. Cllr McGuinness outlined the frustration, heartache and disappointment experienced by families trying to obtain initial assessments for their disabilities and how a recent High Court decision has found that the standard operating procedure provided by the state and the HSE, when it comes to assessment, is unlawful. He stated that while the state ha accepted this, the issue has yet to be resolved. Cllr McGuinness wished to draw attention to the Assessment of Need and Services for Children with Disabilities survey, which can be completed on surveymonkey.com/r/88L&&XN .
One overarching theme of the event was the length of time it can take to obtain an initial assessment and diagnosis for a disability, especially when that disability is invisible, as is the case with conditions such as autism, ADHD and dystonia. Without a diagnosis, it is impossible for disabled people to access the state support to which they are entitled. In some cases, seeking a diagnosis is impossible. “The categories that the state has for diagnosing conditions are twenty two years out of date,” Seàn Rohan explained. “So if your condition wasn’t a condition in 1999, it doesn’t qualify. They need to be updated.”
Other themes were the importance of networking, and the availability of help through charitable organisations. In terms of networking, the event was a great success. “We had people from Dungarvan and the city (Waterford), New Ross and from further [away] in the county,” Seàn explained, “so there was a good opportunity for new connections to be made between people as well. In lockdown, we were stuck in [Waterford] or the internet and it was lovely to have the Autism Conference in Waterford and the Dungarvan Disability Awareness event and we do hope to have other meetings. As a result of both of those recent meetings, there are going to be tangible outcomes.” WDN is now in the process of setting up a neurodiverse youth club in Waterford City and there are other projects in the planning stages at this time.
Another aim WDN has is to change people’s mindset regarding disabilities. Seàn offered the example of the difference between the barriers faced by people with different disabilities. “I used to go round Dungarvan and Waterford City thinking of access from a wheelchair user’s point of view but because our vice chairperson, Sinéad Kilcawley, I now view things differently [with regard to] the obstacles that a blind person would have, that wouldn’t necessarily pose a problem for a wheelchair user. For example, dog dirt on the footpath. You or a wheelchair user can go around it, but if you’re a blind person, you first find out when you step in it or put your white cane in it. It’s disgusting for anyone but it’s far worse for somebody who is blind.”
WDN would also like to express their thanks to Viv and all at 360 Cookhouse for sponsoring the event.
To keep up with WDN events, if you require their support, or if you would like to volunteer or make a donation, please visit waterforddisabilitynetwork.ie or find them on Facebook: @waterforddisabilitynetwork or Twitter: @WaterfordDN
Dungarvan Disability Awareness Event
360 Cookhouse, Castle Street, Dungarvan
2pm on Saturday, April 23rd
All are welcome to 360 Cookhouse, Castle Street, Dungarvan, the venue for an information and networking event at 2pm on Saturday, April 23rd.
A range of speakers will discuss different issues affecting persons with a disability followed by time to network and meet others with an interest in disability issues and hopefully use the event as a starting point for more action and cooperation in the future.
Admission is free and the speeches will be followed by complimentary tea or coffee. WDN is grateful to Viv and all at 360 Cookhouse for kindly sponsoring this event.
Opening words will be from Cllr Joe Kelly, Mayor of Waterford City and County. Mayor Kelly has been very supportive of the work of WDN and of improving the lives of persons with disabilities in general.
Sinéad Kilcawley, WDN Vice-Chair, lives in Ballinroad just outside Dungarvan. A mother of a teenage son with ASD and a teenage daughter who lost her vision during childhood, will speak of the various challenges faced and supports available.
Cllr Liam Brazil has given many talks in the area of suicide and suicide prevention. WDN asked him to speak at the event suicide is twice as high among people with a disability compared to the general population. It is notably far higher among those who acquire a disability, such as from a traffic accident or brain tumour, than among those born with a disability.
Lynsey Walsh from Rare Ireland Family Support Network whose eldest child has an extremely rare condition, 2q24.2 Microdeletion Syndrome. She will speak about how Rare Ireland offers support to people who have nowhere else to turn as they or their have conditions that are so rare there is no organisation specifically for it.
David Cullinane TD will speak on how extremely long waiting times, of years rather than months, for consultations, therapy, physiotherapy, speech therapy and more are having long term consequences on both the development and health of children waiting to be seen.
Other speakers will be announced closer to the day and if anyone has any questions, they are more than welcome to contact WDN anytime. Event organiser Seàn Rohan said “We would encourage people to come early so everyone gets an opportunity to hear all the speakers plus have plenty of time to meet and chat over a cuppa afterwards. This is a great opportunity for people throughout the county to become more familiar with the work of WDN and for us to get to know more people in Dungarvan and county wide so we can better represent all people with a disability throughout the Deisé.”
Carmel Hennessy stood before the microphone at St. Patrick’s Gateway with calm, understated confidence.
She told the gathering assembled at the inaugural Waterford Disability Network (WDN) Conference on Autism that she’d written down what she needed to say on a sheet of A4 paper. As she shared her story, Carmel spoke from the heart with colour, eloquence and clarity. I suspect there’ll be few better speeches I’ll report on all year.
“I was officially diagnosed as autistic about two years ago, just before the pandemic hit”, she began.
“The signs were probably always there but it wasn’t until I went to the National Learning Network (NLN, on the Cork Road) to do a retail course that things began to fall into place and I began to see others with kind of similar world views. For me, it was like being an ugly duckling and walking in and seeing a load of other swans and thinking, ‘woah, this is interesting’. An amazing journey was about to begin for me.”
Carmel met with a psychologist at the NLN who suggested that she (Carmel) might be on the spectrum.
“I was blown away. At 44 years old, I’d never heard that before and I was very curious to find out more. With Cara Outreach on site, I was able to dip my toe into the water and ask questions before the formal diagnosis… I grew up always feeling out of place. I imagined myself as an alien from a distant planet who was here just to observe humans and to report back to my home planet. I know that sounds silly but for me it was as logical a reason as any as to why I was here.”
Carmel continued: “I experienced the world differently from most of my peers anyway. I loved the character Data in Star Trek, that would have been one of my favourite characters as a kid. Everything had one answer (for Data): it was right or wrong, yes or no, on or off and that just suited me perfectly. No ambiguity, no grey areas. My idea of heaven.”
Admitting to a sense of frustration when people don’t say exactly what they mean, Carmel provided an example. “For example, don’t bother saying to me something like: ‘I wonder is the dishwasher empty?’ If what you actually mean is: ‘Carmel, please empty the dishwasher, it’s your turn’, just tell me what you want me to do and I will do it. I’ll follow instructions.”
Suggesting that she’s not smart – anyone at the conference would quickly rebut this claim – Carmel stated: “Logic was all I could relate to. That’s probably why I studied Electronics in college but that’s another story. I don’t understand feelings and I struggle with them. I like my world to be measured, tangible, functional – no frilly bits, no optional extras – a place for everything and everything in its place. I need things to follow in sequence, no surprises. Others could find that extremely boring but I feel safe when I know what’s coming next and I need that kind of safety and security; otherwise I get overly anxious and overwhelmed.”
When feelings and emotions approach Carmel’s immediate radius, “then it quickly goes off or beyond my pay grade. I don’t understand what is going on or what to do about it. As a child, I couldn’t express what this confusion was. It was just frightening. I knew something was wrong. If somebody followed me and asked me what I was feeling or what was wrong, I couldn’t explain. I just didn’t have the language to explain… and I still struggle to recognise the difference between thinking and feeling anything.”
Carmel spoke of her good fortune in having wonderful parents who taught her right from wrong. “In general, there wasn’t much ambiguity at home. The rules were clear and I’m most grateful for that… I don’t like touch or when people hug me but at least I can say that now and decent people will understand and not be offended by it. I don’t pick up on nuances very well and often miss the secret language neurotypicals just seem to know instinctively… I now enjoy dry wit and irony, just like my father did, who I’ve a funny feeling possibly was on the spectrum.”
She continued: “Learning that I’m on the spectrum and that there are others like me has been amazing. I am not an alien, a freak or a misfit and while others operate differently to me, there are strengths on my side too: I am very honest, dependable and reliable; conscientious and for better or worse, I tell it as it is.”
Enjoying her part-time job with WIT (thanks to work experience secured through the NLN), Carmel said: “It was a good way for me to get it because I wouldn’t be able to sell myself necessarily very well in interviews. But give me a chance and you will see how hard working and reliable I am when it comes to doing my job.”
Sharing a house at present with a view to having a place of her own in due course, Carmel can also drive, something she didn’t immediately relish. “But the way I saw it eventually is that driving is a set of rules and logical steps and that’s everything I like. Rules and logic and that suits me fine.”
Fellow speaker Des McGrath (46), a father of three who works five days a week as a delivery driver for “a successful Tramore bakery”, was diagnosed with autism aged 43.
Des said being asked what it’s like being an autistic adult makes him laugh. “Honestly, I couldn’t tell you because I am autistic. I don’t know what it’s like not to be autistic.”
Looking back, Des said he has always felt “a little different to everyone else and I include my siblings in that; I’ve always been the black sheep of the family.”
His late diagnosis represented both “a blessing and a curse. I’m actually glad it came when it did because I was never treated any differently by anyone, my parents, anybody, so I was trying to mix and grew up like everybody here. It was hard, I’ve struggled a lot since I was a kid. Primary school especially was quite hard because in the early 80s, autism wasn’t a big thing at the time – of course it actually was – but you were looked at being ‘the thick’ or the slow learner.”
Secondary school was “a bit easier” for Des due to the technical subjects he studied such as metalwork, woodwork and technical drawing, all of which he enjoyed.
Working life has been “quite easy” given Des’s ease with the structure of the working day, even if certain jobs along the way have taken too much of him both physically and emotionally.
“A delivery driver’s not much of a career but when you’re autistic it’s ideal. It’s structured, it’s timed and I get to spend about eight hours a day on my own in a van – so it’s perfect – I don’t need to talk to anyone! I just literally run in, run out and say ‘good luck’ – some people don’t even know I’ve delivered, it’s that quick.”
Admitting that a lack of emotional skills has “plagued me over the years,” Des, now divorced, having been in a relationship for 20 years, articulated what his understanding of being a good spouse and parent was.
“You went to work, you earned your money, you paid the bills and made sure everything was done and that was what you were supposed to do. I did lack in the emotional support end of things, maybe the intimacy end of things and that did cripple and would cripple any relationship at the end of the day. But it forced me into a situation where I had to go on a journey of self-discovery and that’s how I got to meet Kitty (Galvin) and Mandy (Fox, both with the NLN) and it’s been brilliant so far. It’s an ongoing process but they recognise where the trouble is, where the kinks are and end up ironing out a lot of things. And I have to say I’m a lot happier in my life and in myself – and that’s really it.”
The need to expand supports for both children and adults with autism was the most regular refrain shared by speakers who addressed the Waterford Disability Network (WDN) inaugural conference on autism.
The conference at St. Patrick’s Gateway, which was held on World Autism Awareness Day (April 2) heard from TDs Matt Shanahan (Ind) and Marc Ó Cathasaigh (GP), who were both in attendance.
“Any parent will tell you what they want for their children is for them to be included,” said Deputy Shanahan. “They want them to fulfill their potential and they want them to have safe and productive lives and they want them to get a (psychological) evaluation as early as possible.”
Referencing the strain on the school system in terms of the annual number of evaluations granted per school, Deputy Shanahan acknowledged: “That is not enough, unfortunately that is where we are at the moment but we are trying to change that.”
Deputy Ó Cathasaigh, who has been appointed to the special Oireachtas Joint Committee on Autism, said his interest in autism arose from his 15 years in teaching.
Having taught children who were diagnosed along with those that hadn’t been (“from your years of experience you begin to pick up the signs”), the Green Party TD spoke of “the cliff edges in terms of provision for people with autism. There’s a cliff edge at five or six when they transition from early school and childcare into primary school and another cliff edge faced at 18.”
The Oireachtas Committee, which met for the first time on Thursday last (April 6), is time-bound and has to produce a report within 12 months.
Kara Baumann of Dungarvan’s White Strand Foróige Club, the first such club for people with autism anywhere in Waterford (which opened in 2018), said the club was born out of a need for parents “who wanted something better for their child.”
Kara, whose daughter Ariel was finally diagnosed after a very trying number of years, said the club currently has 20 members and eight leaders. “Anyone can do it,” said Kara when it came to the potential for establishing other such Foróige clubs in Waterford.
“We’ve kids that come from Ardmore, Clashmore, Villierstown, Kilmacthomas and Bonmahon – basically a 20/30 minute radius from Dungarvan. We’re full to the brim and only took on three members this year because we lost one or two. We aim to provide activities and opportunities to develop mental, physical and social skills for the members via structured sports, games, arts and crafts, cooking, getting into the community and having fun.”
Ms Baumann noted: “Temple Grandin (a prominent speaker and author on autism) always says that 80 per cent of people with autism don’t work but we want to have it the other way, that the 80 per cent will work.” WDN’s Seán Rohan said that the network would happily accommodate a city or East Waterford-based Foróige Club free of charge at its New Street Offices.
New Ross-based Teresa Carr Buckley is co-founder of the Dreambig Project South East, a venture for people with autism, which is aiming to develop a footprint in Waterford, Wexford and Kilkenny.
The new organisation’s Board of Directors which is due to be formalized by June, includes Waterford TD and Sinn Féin Health spokesperson David Cullinane.
Ms Carr Buckley hopes to establish a regional-based youth club, a social enterprise in the form of a restaurant, art gallery and bakery, along with a respite/independent living centre and a pre-school.
She stated: “We’re hoping to build apartments in connection with Focus Ireland or Respond for supportive living for people who are neurodiverse – we’re not autism specific – and that’s what makes this idea unique.”
Further Dreambig developments are expected in the coming months.
The success of Cork’s Rainbow Club, founded by Karen O’Mahony and her husband John in 2015, offers a template, which Dreambig is aiming to emulate.
Addressing the conference, Mrs O’Mahony said the club (which she described as “a massive community within a community”) is now supporting 930 families per week, aided by 24 staff (four of whom are autistic adults) and 62 staff.
“We are not Government-funded,” she stated. “We have done everything through fundraising and donations and we have put together a magnificent organisation that’s now sustaining many of our supports and services.
We cater for the whole family. Our vision is all about the holistic approach and the child’s journey, from when you start and right through – and we feel that every county in Ireland should have a Rainbow Club.”
Its support services include Adapted Sports, Messy Play, a Lego Club, a Drama Group, Arts & Crafts, A Gamer Café, a Sibling Workshop and a Cottage Community Café.
Thanking Deputies Shanahan and Ó Cathasaigh for attending the conference, Seán Rohan referenced the support offered by both Cllr John Hearne (SF) who sits on the WDN committee, along with City & County Mayor Joe Kelly (Ind).
Saturday April 22nd is International Autism Awareness Day and Waterford Disability Network are hosting an information and networking event in St. Patrick’s Gateway Centre, Patrick Street, Waterford City with speeches beginning at 2pm. There will be numerous speakers talking about both the hurdles faced by and opportunities available to autistic people in Waterford. There will also be ideas put forward on how things can be improved, and examples given of success in improving services and opportunities for autistic people everywhere.
This is a great opportunity to learn from not only what the guest speakers have to say on a range of issues but also to network, meet others in similar situations, some further along the road than yourself. For example, parents of young autistic children can benefit from talking to parents of adult autistic children, learning what challenges lie ahead, what supports are available etc. Facilitating networking is an important role of WDN and bringing people together at meetings has provided many opportunities for people to get to know each other and in many cases work together on various projects or simply share information.
Among the speakers will be Amanda Fox who is coordinator of Cara Autism Support Service which is the unit within the NLN training centre on the Cork Road, Waterford, which provides specialised support for individuals with a diagnosis of Autism Spectrum Disorder (ASD). Amanda will speak of how this is a highly proactive, structured and holistic service providing person centred outreach support.
WDN intend working closely into the future on numerous projects with Teresa Carr-Buckley and her colleagues in both New Ross Autism Friendly Town and Dreambig Project Southeast. She will talk about how Dreambig project envisages a full range of services for autistic people, including employment, with both a bakery and a café among the list of things hoped to achieve at a location in the Southeast and how groups and individuals throughout the southeast can work together and complement each other.
In contrast, Karen O’Mahony and her husband John, have already achieved in Cork City much of what the Dreambig Project Southeast hopes to. They set up the “Rainbow Club Cork Centre for Autism”. She will speak about the range of services they provide and what can be achieved with hard work and purpose.
One of the success stories from The Rainbow Club is her own teenage son Seán who found his passion for baking there and in May 2021 set up a business for himself trading as “The Autistic Baker” gaining widespread coverage on RTE News and elsewhere last year.
Speaking about the event Seán Rohan, Office Manager of Waterford Disability Network, said “We are very excited to finally have our 1st post lockdown event and are in advanced planning stages for more about different issues affecting those with a disability throughout Waterford. We are also proud that this will be the 1st conference on Autism ever to be held in the Southeast.
There will be a wide range of speakers with experience of the challenges faced and opportunities available to autistic persons from a very young age to much older and it will be especially interesting to compare the hopes and plans Teresa will speak of to the experiences Karen has had with establishing the Rainbow Club. There will be representatives from numerous organisations attending so plenty opportunity to network and with several politicians expected to be present we can further increase awareness of the issues faced by Autistic people in Waterford and generally.
Waterford Disability Network is very happy that we can host this as a free event so that it is as inclusive as possible. There is a huge “Autism Industry” resulting in enormous pressure financially on autistic persons and their families. Even on a personal note, as soon as we in WDN started following a few autism charities and support groups on Facebook we became inundated with advertisements for counselling, conferences, therapy etc etc in a way that never happened from following charities or support groups relating to any other form of disability.
In addition to Autism related issues, we can expect the waiting times faced by children for consultation, therapy and medical care to be raised as this affects all children throughout Ireland with medical concerns, none more so than those who are autistic or in other ways Neurodiverse. All are welcome to the event, and we look forward to meeting people also that wish to learn more about the work of WDN and who may wish to work with us on different issues and future events as we represent all with any form of disability throughout all of Waterford”.
This is a free event, though donations to Waterford Disability Network, a registered non-profit charity, are always welcome. Light refreshments will be provided by Catering students from the Waterford NLN Training Centre and all are welcome. For more details and info on additional speakers to be announced please follow Waterford Disability Network on Facebook.
Saturday April 2nd is International Autism Awareness Day and Waterford Disability Network are hosting an information and networking event in St. Patrick’s Gateway Centre, Patrick Street, Waterford City with speeches beginning at 2pm. There will be numerous speakers talking about both the hurdles faced by and opportunities available to autistic people in Waterford. There will also be ideas put forward on how things can be improved, and examples given of success in improving services and opportunities for autistic people elsewhere.
This is a great opportunity to learn from not only what the guest speakers have to say on a range of issues but also to network, meet others in similar situations, some further along the road than yourself. For example, parents of young autistic children can benefit from talking to parents of adult autistic children, learning what challenges lie ahead, what supports are available etc. Facilitating networking is an important role of WDN and bringing people together at meetings has provided many opportunities for people to get to know each other and in many cases work together on various projects or simply to share information.
Among the speakers will be Amanda Fox who is coordinator of Cara Autism Support Service which is the unit within the NLN training centre on the Cork Road, Waterford, which provides specialized support for individuals with a diagnosis of Autism Spectrum Disorder (ASD).
Amanda will speak of how this is a highly proactive, structured and holistic service providing person centered outreach support.
WDN intend working closely into the future on numerous projects with Teresa Carr-Buckley and her colleagues in both New Ross Autism Friendly Town and Dreambig Project Southeast. She will talk about how Dreambig Project envisages a full range of services for autistic people, including employment, with both a bakery and a café among the list of things hoped to achieve at a location in the Southeast and how groups and individuals throughout the Southeast can work together and complement each other.
In contrast, Karen O’Mahony and her husband John, have already achieved in Cork City much of what the Dreambig Project Southeast hopes to. They set up the “Rainbow Club Cork Centre for Autism”. She will speak about the range of services they provide and what can be achieved with hard work and a purpose. One of the success stories from The Rainbow Club is her own teenage son Seán who found his passion for baking there and in May 2021 set up a business for himself trading as “The Autistic Baker” gaining widespread coverage on RTÉ and elsewhere last year.
Speaking about the event Seán Rohan, Office Manager of Waterford Disability Network, said “We are very excited to finally have our first post lockdown event and are in advanced planning stages for more about different issues affecting those with a disability throughout Waterford.
We are also proud that this will be the first conference on autism ever to be held in the Southeast. There will be a wide range of speakers with experience of the challenges faced and opportunities available to autistic persons from a very young age to much older and it will be especially interesting to compare the hopes and plans Teresa will speak of to the experiences Karen has had with establishing the Rainbow Club. There will be representatives from numerous organisations attending so plenty opportunity to network and with several politicians expected to be present we can further increase awareness of the issues faced by Autistic people in Waterford and generally.”
This is a free event, though donations to Waterford Disability Network, a registered non-profit charity, are always welcome. Light refreshments will be provided by catering students from the Waterford NLN Training Centre and all are welcome. For more details and info on additional speakers to be announced please follow Waterford Disability Network on Facebook.
On Thursday, February 17th, Waterford Disability Network had several meetings in Lawlor’s Hotel in Dungarvan to learn more about specific issues facing people with a disability in the town and throughout the rest of the county. WDN intends having more meetings with those involved directly in the disability sector locally over the coming weeks with a view to holding a public meeting in the town in April or May. It is hoped to encourage more locally and throughout the county to get involved with WDN at all levels. This expansion from the Metropolitan Area was put on hold due to the lockdowns but already began at the recent AGM where Críostóir Ó Faoláin who works in An Rinn and Sinéad Kilcawley who lives in Ballinroad were elected to the committee of WDN, Sinéad ad Vice-Chairperson.
WDN has a mandate to represent disability groups and individuals with a disability throughout Waterford and found it very beneficial having lengthy discussions with Cllrs Conor McGuiness and Thomas Phelan. Many issues were raised and with the Councillors advising on how best to proceed locally and with WDN Chairperson Jo Cregan and Office Manager Seán Rohan, along with Críostóir and Sinéad, raising issues that had been brought to their attention either by calls to the WDN office or on the very active WDN social media channels such as Twitter and Facebook.
An issue that has been raised many times is the problem of dog fouling on the streets of Dungarvan, as elsewhere. While this is annoying for most of us, disgusting to see and is to be avoided, both by pedestrians and wheelchair users it is especially detrimental to people who are blind or visually impaired who unaware of the dog fouling until they put their foot or white cane into it.
“Changing Places” toilets with facilities such as a hoist for those who need them do not exist in Dungarvan or anywhere between Wexford Town and UCC. WDN have included in their submission to the Waterford City and County Development Plan that there should at the very least be such facilities in the City, in Dungarvan and preferably in Tramore and Lismore as well. Not only do such toilets make life much easier for those who need them and their carers or family, but it also makes an area more attractive for tourism, as do so many disability friendly initiatives. For example, if a Dublin family are thinking of a holiday in the sunny South East and a member of the family needs a Changing Places toilet they are going to rule out Dungarvan, indeed all of Waterford or Kilkenny and go straight to Wexford bringing their spending power with them.
During their time in Dungarvan the WDN members went to see many of the issues that had been brought to their attention by local residents with a disability such as the lack of tactile paving at the pedestrian crossing on Convent Row, railings at the crossroads at Ballinroad Church which are there to slow down bicycles but are an obstacle for wheelchair users, a very dangerous drain at the entrance to the road to Dungarvan Sports Centre where a walking cane could easily get stuck and cabling at the corner of Buttery Lane Carpark and Boreenatra which both impedes wheelchair and is dangerous to blind or visually impaired pedestrians. This is just a small sample among many others that were viewed. Though Seán Rohan of WDN is quick to point out that Dungarvan is no worse than most other towns when it comes to disability access issues, and it is only by bringing attention to such issues that change will happen. “People throughout Dungarvan and the surrounding area have been very detailed in the information they have they have given us and working with local representatives such as Cllrs McGuinness and Phelan in a number of areas we will be hoping to see more improvements and the more involvement by locals in the activity of WDN the more representative we will be.
Speaking to the Dungarvan Observer Mr. Rohan said “WDN intends to grow to truly represent people with a disability throughout all of Waterford. We are non-political and work well with many Councillors from all parties and none though we would welcome the opportunities to work with even more of them. The challenge for an organisation such as WDN is that people often get involved in an organisation representing the disability that affects them or their family while WDN works on behalf of people with all forms of disability, both visible ones such as wheelchair users, blind, deaf etc and invisible disabilities such as Autism, ADHD and more. Today was a learning experience and very beneficial but is only the very start and we invite anybody in Dungarvan and beyond with an interest in issues facing people with a disability to contact us and see how we can best work together. We are especially looking forward to working with local groups such as the inspirational people, such as Alma, in Surprise Surprise Dungarvan and West Waterford. Dungarvan is a wonderful town to be proud of, we just want to do what we can to make it as accessible for everyone, regardless of their disability.”
On Wednesday, December 1st the AGM of Waterford Disability Network was held by Zoom due to Covid restrictions. The AGM was chaired by WDN Office Manager Seàn Rohan.
A new committee was elected, though more will be co-opted in the coming weeks who can bring particular experience or skills to the organisation. Also, a number of motions were passed which will enhance the direction, funding and organisation of WDN.
The newly elected Chairperson is Jo Cregan, a committee member since the founding of WDN and well known in Waterford from her involvement in numerous organisations such as Belvedere Manor Resident’s association where she is Chairperson and a committee member of Waterford Darkness into Light.
Vice-Chairperson is Sineàd Kilcawley from Ballinroad, Dungarvan, who has greatly raised our awareness of issues facing people, especially children, who are blind or visually impaired where prior to her involvement we in WDN may have too much thought of Access as an issue primarily affecting Wheelchair users.
Longterm PRO Cllr. John Hearne is returned and we greatly appreciate the benefit of having a Councillor at the heart of our decision making and he is always f great help sorting individual issues for persons with a disability that have brought their issue to our attention.
Other committee members elected were Kitty Galvin of Waterford NLN, Ciaràn Duffy of the Waterford & South Kilkenny branch of Down Syndrome Ireland, Críostóir Ó Faoláin, Vicky Butler and Sandra Griffin of 50 Shades of Exceptional.
Also, while the committee will continue to be responsible for governance, compliance and the direction WDN should take we will now have Friends of WDN which will be open meetings with invited guest speakers, topics of interest, entertainment etc. We have many plans for Friends of WDN that are on hold only due to Covid restrictions and we are eager to host such events ASAP.
A motion was passed that individual membership of WDN will be €5 per year and membership cards will be available from the office within days. In addition, Corporate or Organisation membership will be €30 per year for any disability group wishing to play a full part in the activity of WDN or for any company simply wishing to show support.
The three priorities of WDN over the coming months were outlined as:
Speaking to the Dungarvan Observer afterwards, Seàn Rohan said “we are very happy with an exciting new board being elected and with the various motions being passed which will help us grow facing into the future. I am especially happy with the election of both Sineàd as vice Chairperson and of Críostóir, who is very active in Dungarvan and An Rinn, including being a crew member with the RNLI at Helvick Head, to the committee as both are living and working in the Dungarvan area and together the three of us are already preparing the ground for WDN activity in Dungarvan and beyond, it is only Covid that is holding us back. But it is important that we represent issues important to people with a disability throughout the county just as much as we already do for people in the City and nearby.
Of course, the Friends of WDN will be a very exciting venture and we have many things in the pipeline organised for that but again Covid restrictions are all that is holding us back. So, like everybody else we have many reasons to be hopeful of a much better 2022 for everyone and WDN are looking forward to the challenges ahead. Finally, to remind people we are a free service so if anyone with a disability in Waterford has an issue, either a personal one we will deal with in strictest confidence or a more general one such as cars parked on footpaths please do not hesitate to contact us.”
An idea that has been proposed more than once at Waterford City & county Council meetings is once again being pushed to the fore, by independent TD Matt Shanahan and former Councillor Blaise Hannigan.
“Myself and Blaise, who is a well known community activist in Tramore and always has been, before and after local politics, have been reviewing accessibility to beach areas in the county when the problem of access for wheelchair users became apparent,” Deputy Shanahan said. “Wheelchairs that are not ‘purpose built’ have great difficulty in being rolled along sand and stony areas. It is almost impossible for the user or any person attending a user to bring a conventional chair safely onto the beach for the purpose of enjoying what so many of us take for granted – time spent close to the shore or on the beach. From looking at the problem and speaking to both wheelchair users and representative groups it became apparent there are already existing specified beach wheelchairs in place in some other coastal counties which are managed through the beach life-guards service.”
“The Irish Wheelchair Association have been contacted and are supportive of such a programme in Waterford,” Deputy Shanahan said. “If the initiative was approved a first lot of wheelchairs could be designated for county blue flag beaches capable of navigating all of the main access areas for 2022.”
The proposal would enable families to take responsibility for managing their users in the chairs, which would be available to reserve through a website booking. According to Deputy Shanahan, if the scheme were to prove popular, “further initiative might be developed to allow for hoist access for those with minimal mobility to access the beach.”
“This would require dedicated and qualified healthcare personnel but there are chairs available internationally that allow wheelchair users to swim in the sea safely with attendants – what a wonderful gift a swim in the sea would be to somebody confined to a wheelchair,” Deputy Shanahan added.
At this month’s Council Plenary Meeting, a number of councillors, notably fine Gael’s Lola O’Sullivan and Fianna Fáil’s Eamon Quinlan, took Deputy Shanahan to task, accusing him of not knowing that there already was a beach wheelchair in Tramore.
“I think that Mr Shanahan has obviously taken his finger off the pulse and is not aware of what’s happening in Waterford,” Cllr O’Sullivan said. “I’m currently working with Waterford Sports Partnership and other agencies to provide a similar model to the one that’s currently operational in Tramore to other beaches such as Clonea and Bonmahon.”
Following the Plenary Meeting, Blaise Hannigan contacted the Waterford News & Star to clarify that both himself and Deputy Shanahan were “aware and appreciative” of the work that the councillors have been doing to raise this issue, notably Cllrs O’Sullivan, Griffin and Quinlan, but that their intention was for a “dedicated beach wheelchair service for all of Waterford’s blue flag beaches.
“Having a single adapted chair hidden in one beach area of the county is probably the reason that disability groups or even our own local authority don’t advertise the service,” Deputy Shanahan added. “Many wheelchair users are unaware of any Waterford service including the national representative wheelchair body.”