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The Bill is set to reform the long outdated Lunacy Regulation Act (1871) and replace the current Ward of Courts System with a continuum of support – attuned to the needs of the individual.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.