Capacity2Change hits Maynooth!

Wednesday 3rd December

Hi everyone!

Today I'm going to tell you all about our visit to Maynooth YFG! It was very exciting because not only was it our first meeting out of Dublin, it was also our first overnight stay following a focus group! My fabulous friend, Kirsty Kinsella, studies in Maynooth, and insisted on us staying with her when she heard I was coming. We accepted immediately, delighted that we wouldn't have to rush to get a train back to Dublin after the meeting, and then rush from Connolly to O' Connell Street to get a bus home! 

We met outside Trinity at 10 to 7 and practically ran all the way to Connolly. We ran through the station, and made it onto the train just before it pulled out of the station! Talk about last minute! We were so excited for the meeting and spent the entire journey tweeting and posting about our upcoming focus group! We arrived in Maynooth, rushed off the train and out of the station... and realised we were completely lost! There was a thick fog covering the town, and straight ahead of us was a lake, with a small island that looked particularly menacing in the fog. Thankfully, we soon found Kirsty, who brought us to the meeting in plenty of time.

Maynooth University

The meeting itself was very stimulating. There was a huge crowd at the meeting, and we were in an actual lecture hall for the first time! The issues that were brought up during the discussion were very similar to the issues that were discussed at most of the previous meetings - how is capacity decided? What if something goes wrong? What if someone makes a decision that endangers their life? However, one of the issues brought up was completely new to us, something we had never even thought of before - what about parenthood? Would two people with intellectual disabilities be able to take care of children? We didn't have an answer... we still don't have an answer, but we hope to get one soon. Its simply a matter of research I'm sure. 

Our meeting in Maynooth

Then came the motions! We were both a little nervous that the motions wouldn't pass, particularly after the questions about parenthood which we were unable to answer. Thankfully though, they both passed. The motions were as follows: 

• Maynooth Young Fine Gael support abolition of The Ward of Court system and introduction of a functional approach to capacity

• Paternalism v Autonomy: Maynooth Young Fine Gael support a “will and preferences “ approach to people with disabilities, rather than “best interests” , as outlined in The Capacity Bill (2013).  

We would both like to thank Maynooth YFG for their support of our campaign, We had a truly wonderful time and would like to acknowledge TJ Heffernan, the chair, Kevin Smyth, PRO and Killian Foley Walsh, LRC chair for their support and help organising the meeting, and promoting the campaign. 

See you next time! 

Patricia :)

Visiting DCU

November 25th, 2014

DCU, thank youu! Dang that's good... rhyming! Anyway, we had a great night of quite intense debate here. Intense in the sense that due to exams, I was handling the questions and debate without my better half, Patricia. 

Branch members were particularly concerned about "will and preferences" - the extent to which this is appropriate for people with intellectual disabilities and at what stage can someone intervene when safety becomes an issue? Do we let people act upon their "will and preferences" regardless?

This is a concern that has arisen in other debates too, and its something we're going to examine in further detail. 

The defeated motion "DCU YFG supports a functional approach to capacity rather than a status based approach, as outlined in the Capacity Bill 2013" was defeated on the grounds that safety for itself and others is a major concern. Considering the lack of clarity about the extent to which "will and preferences" will be facilitated in the bill. 

To what extent is "will and preferences" appropriate? To what extent do you allow someone with disabilities to "live and learn" and at what stage is "best interests" practice warranted? I'm not sure but maybe when their behaviour is a safety risk to others or when their life or health is at high risk. 

I've highlighted high risk because the "best interests" practice associated with the Ward of Court system tends to be implemented regardless of the risk associated with the decision the person with disabilities needs to make. Here are some examples: 

• Living in supported accommodation
• Refusing the flu jab
• Refusing occupational therapy, speech and language therapy or other therapy against a carer's wishes
• Having disability allowance paid into their own account, not a parent's

These are everyday decisions with risks attached but not to the extent that "best interests" practice is warranted. However, it requires information to be pitched at an appropriate level so an informed so an informed decision can be made. If it was my will and preference to refuse the flu jab, my GP would  probably explain the risks, hear my views and then accept my decision. However, for a person with intellectual disabilities, even if the information was delivered in a way that their speech and language therapist advised as appropriate, their decision would probably not be accepted. 

Why is that? That even when the person shows understanding, their "will and preference" is not accepted? Probably because there is no legal obligation to do so, and also because "best interests" practice is king. Current laws dictate no right to autonomy regardless of risk. 

So we need to differentiate out the elements of "will and preferences" solutions and where "best practice" very occasionally, may be appropriate. 

Now back to DCU - whose branch members contributed to an extensive debate that explored current laws, culture and legislative clash and the afore mentioned issues. 

A special thanks must be given to David Heffernan, Andrew Ralph and Ryan Hunt, who helped to facilitate the event and showed great support of the campaign.

The following motion was passed: "DCU YFG support abolition of the Ward of Court System" 

The following motions was defeated: "DCU YFG support a will and preferences rather than best interests as outlined in the Capacity Bill  2013" 

Thank you to everyone who took part. See you next week where we'll be venturing beyond the Pale to Maynooth! 

Best Wishes, 

Rachel :)

Focus Group with TCD YFG

Monday, November 17th

Hello again! 

Following a fantastic launch to the campaign in UCD, Presentation Number Two took place in my home branch – Trinity YFG, and very appropriately during our Equality and Diversity Week!

Trinity College Dublin

So all was set for a great debate: laptop charged, cue cards in order, nice large group in attendance, Theo did the chair’s address and then…. Ready… steady… : projector decides to reject my lovely laptop with an “unidentified device” notice, and nothing can change it’s mind – not even David Higgins, TCD-YFG’s star child achiever but more importantly the computer dude with  Big Bang Theory levels of computer expertise. 

So, the presentation went ahead without visual supports, but that certainly didn't deter members’ deep engagement with the motions and the high level debate that ensued. Once again, almost everyone had something to contribute, and the support was overwhelming.

In conclusion: Trinity-YFG voted unanimously in favour of the following motions:

• Trinity Young Fine Gael support abolition of The Ward of Court system and introduction of a functional approach to capacity
• Paternalism v Autonomy: Trinity Young Fine Gael support a “will and preferences “ approach to people with disabilities, rather than “best interests” , as outlined in The Capacity Bill (2013).  

It was great to hear the views of my fellow branch members. Also, important to mention is the level of crucial support received from fellow committee members  in particular– Emma Purser PRO who never fails to tweet and retweet about the campaign, and has accompanied me to numerous presentation nights in UCD and DCU, while Theo Donnelly – chairman, has facilitated the evening’s presentation and been provided some key advice and support. Thank you to everyone who contributed to the debate. 

See you next time. 

Best Wishes, 

Rachel :)

First Focus Group - UCD YFG

Thursday, 6th November

Hiya guys!

As Rachel mentioned at the end of her last post, our first focus group took place in UCD - the greatest place on earth, and not enemy territory AT ALL. It was Rachel's first time coming out to UCD - most of our meetings up until then had been in town or in Trinity. She arrived, looking more official than I could ever hope to look, and I think its safe to say, a lot more collected than I was. I was an absolute bag of nerves, convinced I was going to blank and forget absolutely everything our campaign was about... and in front of my own branch too! 

UCD 

We decided to get some coffee before heading over to the meeting room early to go over the presentation and psyche ourselves up for the event. We didn't even make it out of the Student Union Shop before disaster struck... Rachel spilt her coffee all over the front of her top. After a short delay, we were back on track and arrived in the Ag building to present our campaign. Thankfully, my nerves were completely unnecessary.... the presentation went off without a hitch! 

On to the debate! It was a lively debate, almost everyone seemed to have an opinion, concern or question about the Bill... it was fantastic to get their feedback. I think we were both nervous that no one would really care about it, but that definitely wasn't the case. The motions that we proposed that night were:

• UCD YFG would support a will and preferences approach to intellectual disabilities rather than a best interests approach as outlined in the Persons with Disabilities (Capacity) Bill 2013
• UCD YFG would support a functional approach to disability rather than a status based approach

Both motions were passed, the first was passed 17 to 3, and the second was passed unanimously. It was amazing to hear the widespread support for our campaign, especially from the committee members. Both Richard Looby (Chair) and  Tom O Sullivan (Vice Chair) were particularly supportive. The support from Trinity was also noted, with their PRO Emma Purser, making the long trek out to support us on our first focus group! 

It was a fantastic start to our campaign and had us both delighted and brimming over with excitement for the next focus group in Trinity. 

All the best! 

Patricia =)

An outing to Leinster House! Our meeting with Liam Twomey and David Stanton

Hey Everyone! 

Our blog today is an exciting one! An account of our first meeting in Leinster House, which ultimately shaped the campaign we're leading today! We met with Deputy Liam Twomey (our local Wexford TD) and Deputy David Stanton - Chairman of the Justice Oireachtas Committee in charge of the Capacity Bill (2013). 

David Stanton, TD

Liam Twomey, TD

Liam Twomey, TD, was re-elected to the Dail in February 2011. He was appointed Fine Gael's Deputy Leader in the Seanad, and Spokesperson on Finance in October 2007. His Living Wills Bill was incorporated into the Capacity Bill (2013).

David Stanton, TD, was first elected to Dáil Éireann in 1997. He is the current Chair of the Oireachtas Committee on Justice, Defence and Equality. Considering the wealth of expertise shared by both TD's it was with great enthusiasm that we accepted Mr Twomey's invitation for a meeting in the Dáil Bar of Leinster House.

Bustling up Kildare Street that morning, coffee in one hand, notes in the other; we had ideas, we had questions, and undoubtedly a lot of nerves too. We were greeted by Deputy Twomey's secretary and a few moments later, over coffee, we found ourselves sharing a great conversation with Deputies Twomey and Stanton over all the issues that had led us to that meeting: publication of the bill, the UN Convention, our appointments as Equality Officers and our potential role in furthering change. 

The meeting gave us a great insight into what our role could most effectively be, in terms of promoting reform of the Lunacy Regulation Act (1871). Initially, we felt we could create a policy document with a list of proposed amendments. However, we crucially learned through our discussions that, unlike Marriage Equality, there was more of a "top-down" momentum behind the Capacity Bill's publication. It was being passed, not because society was crying out for change, but because of Ireland's signing of the UN Convention on the Rights of Persons with Disabilities (2006) The Capacity Bill signifies our intent to ratify this Convention. 

As there is sufficient political momentum behind this bill, we questioned “Is society ready for the implications of this bill?” for people with disabilities but also: the professional duties of legal and health care professionals. As mentioned by Liam Twomey TD we will be among: “The first generation of graduates that will have to deal with these new changes when they come about”. So are we prepared to do so? 

The purpose of the campaign seemed to shift towards: AWARENESS, EDUCATION, DEBATE, INFORMATION SHARING –all these terms  are unfortunately bashed about as generic solutions to debates about any social issue. So let’s be more specific about what they mean for us! Following our meeting, we learned that our role was to start a campaign targeting awareness of the main principle changes proposed in the bill. What were they again?

•  Abolition of the ward of court system and a functional approach to capacity
• A move away from best interests practice towards acknowledging will and preferences of the individual.

We agreed that focus groups and powerpoint presentations with different members of the student body in UCD and Trinity would help us to generate an attitudes and opinions poll. 

Our meeting with Deputy Liam Twomey TD and David Stanton TD, seemed nothing but invaluable in terms of the  clear sense of direction it gave  Capacity2Change. We learned about the broader landscape surrounding the Capacity Bill (2013) and the ways in which it could have maximum and significant impact.

So here’s to new and exciting directions for Capacity2Change!

Read up on our next post where we’ll be discussing our very first presentation night in enemy territory - UCD (I believe what Rachel meant to say here was "the greatest university to grace God's green earth - Patricia).

Best Wishes,

Rachel :)

Our First Post!

Hello there!

Capacity2Change is an awareness campaign led by two final year students, Rachel Kidd and Patricia Kenny. We're studying at Trinity and UCD respectively and are both Equality Officers of our respective Young Fine Gael College Branches!

Our campaign aims at raising awareness of the failings of the current Lunacy Regulation Act (1871) and how the Capacity Bill (2013) aims to correct these faults and improve the lives of people with intellectual disabilities. We also wish to collect the attitudes of people towards these laws, and collate them in a document which we hope to present at a future Young Fine Gael event. For more information on the campaign and these laws please see our "About Capacity2Change" page!

We decided to start a blog as we felt it would be an effective method of raising awareness of our campaign, and of the Capacity Bill. It would also allow those who are following the campaign to receive updates on our progress.

So far, this campaign has visited UCD Young Fine Gael (YFG), Trinity YFG, DCU YFG and Maynooth YFG. We aim to visit all Dublin college branches, and as many other branches around the country as we possibly can! As well as this we will be running focus groups with students of health sciences, social sciences and law within our respective universities. Finally, we hope to run seminars and Panel Discussions on these laws, which will create awareness outside of the target demographic (ie students in health science, social science and law).

This blog will  comprise of updates on our focus groups and events throughout the year. We will both be contributing articles, and hope that you will find them informative and interesting. In the next couple of days, we hope to summarise what we have done so far this semester!

If you have any questions or would like to get involved in our campaign, please contact us at YFGcapacity2change@gmail.com or just leave a comment below!

Thanks for reading!!

Patricia and Rachel xx

Here we are on route to present Capacity2Change at Maynooth YFG