Public Meeting Alert ! Get Your Crash Course on The Capacity Bill this Wednesday .

Hi Everyone, 

Here it is !
The details of this Wednesday's public meeting ahead of  the imminent enactment of the Capacity Bill this October.   

Date: Wednesday, October 21st
Time: 7pm-9pm
Where? Global Room Hamilton Building Trinity College. 

The evening will comprise:

• a 20 minute "all you need to know" style presentation on the Capacity Bill - presented by members of the Young Fine Gael Capacity2Change committee
• Contributions from a panel of special guests
• A Q&A with you , our audience. 

The Capacity Bill is the most underrated and yet the most important civil rights issue of a generation. Before it's imminent enactment, Capacity2Change wants YOU to know about the effects this bill is set to have on all of us, not just those with reduced decision making capacity. 

Some of the issues covered will be as follows:

• Abolition of the Lunacy Regulation Act
• Ratification of the UN Convention on the Rights of People with Disability
•  Civil rights abuses in Ireland
• How current legislation is actively facilitating the abuse of civil rights for poeple with reduced capacity
• The significance of the Capacity Bill as a step towards equality
• The implications of the Capacity Bill for legal health care and social work professionals
• Legal capacity as a universal concept

Contact us at yfgcapacity2change@gmail.com if you have any further questions. 

The facebook event link is here. 

For those of you who don't know The (very cool) Global Room, it looks basically like the BBC Newsroom.... 

See you Wednesday. 

Best Wishes,

Rachel. 

Hi Everyone, 

Here it is , our first post this autumn, and wow has it been a busy one. 

Firstly, we have a stellar new committee with individual and collective responsibilities and a plan that needs to be executed before early spring when General Election 2016 happens. 

Lots to do, so here's the story so far. 

1. Leinster House Protest

From September 15th-17th , Disability rights activists staged a 3 day protest outside government buildings to campaign for a number of key equality issues including enactment of the Capacity Bill. I headed down to interview the protesters , including: Paddy Connolly, CEO of Inclusion Ireland, Cormac Cahill Communications Director of Inclusion Ireland and Dara (pictured below) 

Dara spoke about his desire to receive direct payments and see the Capacity bill enacted. I also met with other individuals (who did not wish to be photographed) who spoke about their personal experiences of the criminal justice system, and how victims of crime (particularly abuse) with reduced capacity, are treated. 

Some of the stories were horrific , and I will be re-contacting some of these individuals in the near future to follow up on their stories, offer support, and ultimately dovetail with their campaigning. The whole experience was quite intense, and a complete first as I have never formally interviewed people before; so thank you to all the individuals who shared their stories. 

Another interesting finding from my interviews was that many of the protesters wished to see the Capacity Bill enacted. They demonstrated a general, if not a vague, understanding of its main principles but there is certainly a lot of work to be done to get a clear message out into the general public consciousness about what exactly the Capacity Bill entails , and what it means in terms of its impact on everyday functioning. 

That's where I see Capacity2Change making a real difference in the next few weeks and months. Our work will be a tight tension between political lobbying and public engagement - sending out a clear and strong message to the public about what the Capacity Bill is , in essence, and why it matters to all of us. 

The Capacity Bill matters to all of us , basically because as human beings all of us have capacity , and yet in equal measure we are all at risk of losing such capacity during life or at birth. So , in the interest of personhood and autonomy - we need to see laws like the Lunacy Regulation Act (1871) abolished - we need to copper-fasten dignity, respect and autonomy into Irish legislation so we can escape a current legislative situation that actually facilitates  neglect of the human rights of individuals with reduced capacity. 

2. Committee Meetings and Decisions

Following on from the Leinster House protest revelations, it was clear that public awareness and political lobbying needed to be intensely prioritised between now and the time of enactment of the Capacity bill , so we proposed the following medium term plan

• Secure a meeting with Minister Frances Fitzgerald
• Organise a public meeting where the basic essence of the Capacity Bill would be discussed pre-enactment of the Capacity Bill. 
• Organise a more in-depth panel discussion with key experts, post enactment of the Capacity Bill 

That's it for now: my full interview with Paddy Connolly, will be available to view on the next blog post, and details of our public meeting will be released in the next few days. 

Wishing you all the best. 

Kind Regards,

Rachel 

:) 

Press Release Following UCC Panel Discussion With Minister Kathleen Lynch

Hi Everyone,                                                                                     February 28th 2015

As mentioned in our last blog post from Cork, Minister Kathleen Lynch was in attendance at our UCC panel discussion and provided us with a statement about the Capacity Bill. The statement has been included in the following press release which was submitted to the Irish Times Irish Examiner, Irish Indpendent and journal.ie  for publication.

***BEGINS***
 Minister Lynch: The Capacity Bill Could Realistically Be Enacted by The End of 2015

Minister Kathleen Lynch has stated that the long awaited Assisted Decision Making (Capacity) Bill 2013, could realistically be enacted by the end of 2015. As keynote speaker at a Capacity2Change event, held in UCC last Thursday (February 26^th,) the Minister also stated her receipt of confirmation from Department of Justice Officials that “once the Child and Family Relationships Bill goes through, the Capacity Bill will be next (to be enacted)”. To this, she added her great hope that the bill could also come out of committee stage by the summer recess.

Capacity2Change is an awareness campaign for the Capacity Bill initiated by the Trinity and UCD Equality Officers for Young Fine Gael (Rachel Kidd and Patricia Kenny). Its primary objective is to inform students of health science and law about the Capacity Bill’s implications and the perceived urgent need for its enactment.

The Capacity Bill is important in terms of its potential to restore basic civil rights such as decision making power, marriage, land/asset ownership and informed consent to people with reduced decision making capacity – intellectual disabilities, psychiatric issues and dementia.

The Bill is set to reform the long outdated Lunacy Regulation Act (1871) and replace the current Ward of Courts System with a continuum of support – attuned to the needs of the individual. Other principle changes include a move away from “best interests” practice, to practice that is in line with the “will and preferences” of the individual.

Currently in Ireland, our laws create “a civil death” for people with disabilities according to Piers Gooding a lecturer in The Centre for Disability Law at NUIG  and a guest speaker at Thursday’s event. Due to the Lunacy Regulation Act (1871) the issue of capacity is a key stumbling block in the courts. As a result cases are often dismissed if a  key witnesses has a condition such as Down Syndrome. In the eyes of the current law they “lack capacity” due to this condition regardless of the competency they may show.  Equally the judiciary are not obliged to accommodate such witnesses with appropriate questioning.

Beyond civil rights, the bill also includes provisions for advanced health care directives,“living wills”, as a means of preserving capacity at the end of life. At an event held in UCD last November, Capacity2Change leader Rachel Kidd, questioned Minister for Health Leo Varadkar about such provisions to which the Minister stated he was in favour of “living wills” as something with “great potential for patients and health care staff.”   

For more information about Capacity2Change and the Capacity Bill see www.capacity2change.blogspot.ie or email yfgcapacity2change@gmail.com

*ENDS*

 

Capacity2Change Hits Cork for a Major Discussion With Minister Kathleen Lynch and Piers Gooding NUIG

Hi Everyone,                                                                                                 February 26th 2015

When Minister Kathleen Lynch confirmed her attendance for our panel discussion in Cork, we had to re-read the email....a few times.... and then another few times. Not only a government Minister, but Minister Lynch's chief responsibility is for disability older people and equality. As a result,  one of her greatest priorities  is enactment of the Capacity Bill. This gave the event an added and very exciting opportunity to hear directly from a governmental perspective , where exactly the Capacity Bill was in  the process of enactment. (In the next blog post, you can read the associated press release I drafted).

Also, we had been in a lot of contact with the Centre for Disability Law in NUI Galway, during the year - and we were equally delighted when one of their lecturers and associate professors Piers Gooding Ph.D was available to provide his insights at the event too.

A huge thank you needs to be given to UCC , for facilitating the event , but in particular to Ian Hutchinson - chairperson of UCC Young Fine Gael. We really could not have organised the event from Dublin without him !



Minister Lynch  focused on the quality of life of people with intellectual disabilities, dementia and psychiatric illnesses when answering questions about the potential changes the bill will create. When asked about the greatest change that is likely to come,  the Minister referred to the benefit for people with mental health difficulties - as their legal capacity and mental capacity will be assessed as SEPARATE entities  rather than a single entity as is the case now.

The stand out quote from Piers Gooding , was "the civil death...  people with reduced decision making capacity are enduring.... as a direct result of the Lunacy Regulation Act; "a civil death" really sums up the crisis situation we currently have - such people really have no civil rights and no  accommodations currently exist to support decision making and autonomy. Gooding's quote also shows  how movements to encourage enactment of the Capacity Bill, such as Capacity2Change, Inclusion Ireland, Think Ahead,  really draw parallels with the civil rights movements we have seen in the past for other groups - groups who wanted an end to racism, segregation, discrimination of any kind eg: African Americans in the USA. We are seeking the same recognition, the same equality, for people with reduced decision making capacity.  With a year left until the next general election, the time to prioritise such a bill is NOW ! It cannot wait and people who require recognition of basic civil rights cannot wait either!

Overall, we were just delighted with the event: the contributions made by Minister Lynch and Mr. Gooding  as well as the great number of guests who attended. In the Q&A session, questions centred around the major changes this bill would bring and the potential risks to wellbeing.
For now, I'm gonna sign out and try (really try) to upload the fabulous video blog Patricia has put together - including one part we just weren't brave enough to put on facebook .

Please get in touch if you have any questions or comments you want to make about the story so far. We've been delighted with your responses and we really appreciate any insights you want to send our way - yfgcapacity2change@gmail.com

Keep an eye out for the press release in our next post too !

Wishing you all the best.
Kind Regards,
Rachel.

Dublin Panel Discussion -

Hi Everyone !                                                                                               February 2nd 2015

This is a run down of Capacity2Change's first big night out,  also known as our Dublin panel discussion . The event marked a big leap forward for Capacity2Change but first let's take a quick look at the lead up to what was a very successful night in Trinity.

Last term, could be conceptualised as a narrow lens view of the campaign's message - with Patricia and I travelling to each university in Dublin, as well as NUI Maynooth and our own home branch in Wexford with a presentation and motions for debate on the Capacity Bill. We wanted to get the basics out there in terms of capacity legislation. We also took a lot of time to set clear principles and objectives for the campaign, and we met with a number of politicians and advocacy groups, whose advice was indispensable and much needed in terms of growing the campaign. Publication of my article in the University Times was also a great help in that regard.  http://www.universitytimes.ie/?p=31888 .

So what next? Clearly, in 2015, we felt  the time had come to bring in the experts  and get a more wide angle lens view of capacity as it relates to law, advocacy, healthcare and equality. We wanted to facilitate an event where experts could present their knowledge and answer some of the more technical questions that are associated with this piece of legislation. With that in mind, nothing seemed more fitting than a panel discussion, which took place on Monday February 2nd 2015 in Ui Chadhain Theatre Trinity College.

 To say it exceeded our expectation would be an understatement - on so many levels. The event was attended by about 90 students from  Dublin and further afield, members and non members of Young Fine Gael.

As Angela Edghill of the Irish Hospice Foundation, told us on her way out during the event, she heard agirl on the phone  "Oh, no I can't come yet, I'm at this Young Fine Gael thing .... Yeah, I'm not in YFG  but it's really really good, I'll see you later". So, it's really encouraging to know that our message has an appeal to people outside of political organisations. It's a human rights issue if anything.


And here's a quick run down on the esteemed panellists who were in attendance  all of whom contributed wonderfully to the event.

1.Ms. Patricia Rickard Clarke: Ms. Clarke is Chair of The Law Society's - Mental Health and Capacity Task Force. She is also a former Commissioner of the Law Reform Commission and has contributed extensively to the legislative process involved in the Capacity Bill .
 





2. Dr. Maria Walls - a researcher at Trinity College Dublin, and a former Director of Research and Policy Development at the National Federation of Voluntary Bodies. She began her professional life as a social work and her doctoral dissertation is based on the implementation of the UN Disability Convention 2006.

  3. Mr. Paddy Connolly  - CEO of Inclusion Ireland  . Mr. Connolly has regularly appeared on Prime Time the Front Line and other current affairs programmes as an advocate for people with intellectual disabilities and their families - most recently in relation to the Aras Attracta Prime Time Investigation.



4. Mr. Pat Clarke - CEO of Down Syndrome Ireland - has over three decades of experience in advocacy for people with intellectual disabilities. His campaigning work has directly contributed to a change in national legislation, giving rights and resources to children with Down syndrome in the area of mainstream education. Mr. Clarke  has also fostered and promoted medical research in conjunction with The National Children’s Hospital, Ireland in collaboration with the Department of Paediatrics, University of Dublin, Trinity College, which led to the development and publication of consensus medical management guidelines for children and adolescents with Down syndrome in Ireland.

After the talk,  panellists then engaged in a question and answer session with guests.

In hindsight, this event was a huge step forward for Capacity2Change. It was also a slight leap of faith for Patricia and I , considering how specialised the topic of capacity legislation is , and to see so many of our peers, fellow students and interested parties there in attendance is a testament to just how important this piece of legislation is and the appetite that is out there to know more about it. We will endeavour to keep spreading the message but it means a lot when such passion and interest is acknowledged and reciprocated by peers, so thank you ! Thank you to our wonderful panel! Thank you to everyone who got in touch with questions, requests and good wishes afterwards too.

Of course a picture's worth a thousand words, I'll let the photos below tell the rest of the story.
In our next post, we'll be giving you all the news from our evening in Cork with Minister Kathleen Lynch..... but in a slightly alternative format to what we're used to.

Best Wishes,
Rachel. 

Home at last! Our evening in Wexford

December 29th 2014

Hi everybody! 

Once again, we have to make our apologies for a late post! Keeping a blog up to date is a lot harder than we had first imagined!

Our meeting with Wexford YFG

On the 29th December, myself and Rachel visited our home branch - Wexford Young Fine Gael! It was our first meeting outside of Dublin, and the first meeting that was attended by members of the Oireachtas. Deputy Paul Kehoe (TD) and Senator Michael Darcy attended, much to our delight! However, we were also quite nervous. Its one thing to make a presentation to a group of students, its another to make one for senators/TDs. Nevertheless, we packed up our presentation, got in the car, and headed off to the Riverside Hotel, Enniscorthy. 

The Vice Chair, Steven Murphy met us inside the door and before we knew it we had completed our presentation and were opening up the floor to discussion. And wow, what a discussion it was!! Having two members of Oireachtas present to contribute to the debate really had an impact! We passed both our motions, and recieved some really useful insights into our presentation from the floor. I think when we were leaving, we both felt that it had been one of our most successful discussions to date!

Thank you so much to everyone in Wexford who accommodated us! Steven chaired the event and did a wonderful job, and Ciaran Allen, LRO, was really helpful in organising the event! A special thanks has to go to Paul Kehoe and Michael Darcy for attending! It was a wonderful evening.

Byee!!!
Patricia

Where To From Here? One Month On From Prime Time Investigates: Aras Attracta

Considering the major fall out from the Prime Time Investigation into Aras Attracta, about a month ago, we decided to take a look back at the implications to date and ask : "Where to from here? That's the question we all wish to answer!

Where do we go from a Prime Time investigation that highlights explicit and consistent abuse of people with intellectual disabilities in a care home such as Aras Attracta? Among the extensive examples of physical and emotional abuse, the culture of control and hatred was exemplified through lines such as "Even if you died, I wouldn't take you to the toilet... you should be dam glad you have a roof over your head."

Do we treat this as an unfortunate once off? Is it representative of Irish society's attitude towards our most vulnerable? Is the responsibility shared or is some single someone, somewhere responsible?

In a December episode of Prime Time, Minister Kathleen Lynch couldn't rule out the possibility that such findings were "just the tip of the iceberg".

That declaration from the Minister, combined with 700 abuse allegations, gathered over a two year period by HIQA, spells the great potential for even more Aras Attracta style revelations down the line.

Ever since December, the debate has been widespread throughout the airwaves, television channels and households of Ireland - and further afield. Some have highlighted the need for legislative change, cultural change, increased training, increased accountability, even CCTV cameras in these care homes.

But what's the real answer?

The situation is incredibly complex, and it would be naive to think that it could be fully solved within a 500 word document such as this one. Therefore, in answer to "where to from here?" we, at Capacity2Change seek to answer this question by drawing on the contribution legislative change can make to resolving the issues raised in the horrendous fall out from Aras Attracta.

We will do this by outlining the implications of current laws and the widespread calls for its reform - beyond those made by Capacity2Change. In an interview with Marian Fincuane, Colm O'Gorman, urged the government to prioritise ratification of two major UN Conventions that we signed almost 7 years ago ."The UN Convention On The Rights Of Persons With Disabilities". "The UN Convention Against Torture".  

Understanding of the current Lunacy Regulation Act (1871) can help us to contextualise these conventions. 

Due to the Lunacy Regulation Act (1871),(LRA) the victims of abuse will not be included as official witnesses entitled to give statements - and that will occur regardless of the severity of their disability of the competency they show as potential witnesses. 

The Prime Time investigation highlighted how one resident was non verbal in her expressive communication. However, she could "understand everything." Yet, the LRA deems her to "lack capacity" and thus, there is no legal obligation to hear her verison of events. Instead, legal professionals will have to rely on video evidence, as provided by Prime Time, or an eye witness who has capacity ie: doesn't have an intellectual disability. 

This law has been widely criticized as a prejudiced write off of potential witnesses, based on a diagnosis of intellectual disability. It is also completely artificial way of determining capacity - which fluctuates depending on the complexity of the decision to be made. 

These issues have been highlighted in a report published by UCC lecturers: that systematically reviews the issues how people with intellectual disabilities are included in the criminal justice system. 

"Access To Justice For People With Disabilities As Victims of Crime In Ireland."

Claire Edwards, Gillian Harold and Shane Kilcommons. 

Faculty of Law: University College Cork. 

The main findings of this report are as follows:

• Crime against people with disabilities is significantly underreported and often fails to proceed to prosecution. 
• Issues of capacity were seen as a key stumbling block for people with disabilities in the criminal justice system 
• In conclusion: "People with disabilities experience numerous barriers in their encounters with the criminal justice system: from reporting to post trial experiences: some are legislative, procedural, structural, attitudinal. 
• What is key is the need to make justice more accessible. 
• "There is still a significant way to go in terms of people with disabilities being recognised as victims of crime with specific needs in Ireland, particularly in a context where current criminal law and capacity legislation remains outmoded and reinforces the vulnerability of people with disabilties.  

Considering both the findings of Prime Time Investigates and the above report, we can see just how relevant publication of the Capacity Bill (2013).  This is where  the objectives of Capacity2Change come in.

Here at Capacity2Change, we want the Capacity Bill (2013) to be passed into law, so that people with disabilities can be appropriately supported by the criminal justice system,That is not to say that the bill perfectly fulfills criteria for ratifying the UN conventions previously mentioned.

However, we deem it to be  a step in the right direction towards doing so.

Best Wishes,

Rachel.