Dungarvan Leader, Friday, April 29, 2022

Waterford Disability Network hosts long-awaited information and networking event by Jo Bell

Newspaper clipping from the cover of the Dungarvan Leader
Clipping of article on Waterford Disability Network hosting information and networking event

Text of article:

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

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