Children’s Rights Alliance lecture marking the work of Jillian van Turnhout

Children’s Rights Alliance lecture marking the work of Jillian van Turnhout
Senator in Seanad Éireann from 2011 to 2016
in The Ark, A Cultural Centre for Children

13 April 2016

Speech by Jillian van Turnhout

Thank JvT Speech 14 April 2015 Photo (1)you Children’s Rights Alliance for this wonderful opportunity to reflect on my path to children’s rights advocacy and my term of office in Seanad Éireann.

So, what can you expect from this evening? I plan to start by sharing a bit about myself and my journey. I will use some of the legislation we dealt with in the Seanad to offer insights into both success and failure and how best to avoid the latter.  I hope you will find it interesting and to the NGOs in the room, I hope it will help you both understand life inside the bubble and how best to shape it.

As I look around the room I see so many friends and supporters.  I know I couldn’t do what I do without you.  On this note I want to begin by giving a very special thank you to my husband Michael who is my rock.  A huge thanks to my Mum, Jenny Hassett and my late Dad Michael Hassett for always believing in me and nurturing the eternal optimist in me who believes she can make the world a better place.  To my brothers John and Gerry for the reality checks and keeping me grounded. And to my sisters-in-laws Philo and Gina for always cheering me on.  My Researcher and Assistant in the Seanad over the last 5 years, Amy McArdle, is also here tonight and I want to pay her a special thanks for all her support and expertise as our time working together comes to an end.  Amy, I wish you good fortune as you move to your exciting new challenge.

My Dad lost his Mum at the age of 8 and lost his Dad less than 3 months later following a bicycle accident. Unbeknownst to him, my Mum, living only a short distance away, would soon be grieving the loss of her Dad. So much tragedy in their early years and both tell of how narrowly they escaped a fate in one of the children’s institutions we are only too aware of today. They were lucky you see. They both had strong, determined adults who believed in them. So, while they grew up in hardship, they grew up knowing they were loved. This is the gift they gave to me and my brothers, the gift of growing up wrapped in love. When asked what one thing I would want for every child?  My answer is always “to have an adult who believes in them fully and strives with them to realise their dreams”.  It has taken me until now to realise that their experience, and the experience they gave to us their children, was a key factor drawing me to children’s rights.

JvT Speech 14 April 2015 Photo (2)For the first 12 years of my career I worked in the private sector but throughout this time I was working with children and young people in a voluntary capacity not least through my involvement with the Irish Girl Guides. Anyone who knows me knows I’m a Girl Guide! I have endeavoured in every role and position I have held to date to live by my Guide Promise and Law to ensure that “I think of others before myself”.

Just over 20 years ago I was elected as Secretary General to one of the then three European youth platforms – it brought together all the International Youth Organisations at a Council of Europe level.  Over three years I worked in Brussels with the leadership of the other two youth platforms to successfully merge into the European Youth Forum – a sole platform for youth organisations across Europe.

On returning to Ireland I was honoured to be elected as President of the National Youth Council of Ireland.  Now, I know I’m showing my age here but I remember getting my first mobile phone in this role and the excitement of waiting for it to ring.  I also remember doing my first radio interview and my Mum, who remains my dedicated media consultant to this day, giving me her first piece of advice “I hope you are not going to be one of those moaners who is always complaining.  If you want to be a game changer then you need to focus on how to solve the problems”.

I went on to be a member of the European Economic and Social Committee which is an advisory body of the EU and was honoured to be elected to the position of Vice President.  As part of my work on the EESC I was a member of the EU-China Round Table, which took me back and forth to China over several years.  In this role I was the rapporteur on its Children’s Rights Report.

I still remember my job interview in the Central Hotel for the Children’s Rights Alliance in May 2005. I remember thinking it was a long shot since my professional experience until then was primarily in the private sector, albeit with the advantage of significant performance driven results expertise, but still it was only my voluntary work that was directly relevant to the work of the Alliance.  Perhaps I needed to think more like a man and focus on all the things I could offer.

In accepting the role I met every metaphor going-baptisms of fire, roads hit running, and deep ends plunged. Within my first year in the Alliance we produced a Shadow Report and had appeared before the UN Committee on the Rights of the Child, we also produced a children’s report to the Committee and had agreed a Social Partnership deal entitled, somewhat optimistically, “Towards 2016”.

In my time in the Alliance I worked with many wonderful and talented people and I would like to take this opportunity to wish one of them, Maria Corbett, every success with her exciting new venture.  Maria recently announced she is going to take up a full time PhD with NUIG to examine the process of how we decide to take children into care. I can’t think of a better person for the job.  During this time, I also developed a great relationship with Prof Geoffrey Shannon whose legal expertise I have always appreciated. Thank you both for your firm and lasting friendship.

It was on taxi ride through Shanghai’s equivalent of Temple Bar in 2011 that I received the fateful phone call from the Taoiseach, Enda Kenny, inviting me to accept his nomination to the Seanad. I hope you will appreciate just how surreal a moment that was for me! To this day I remember clearly him stressing that he wanted me to be truly independent and keep my own voice.

So this evening, in the spirit of ‘keeping my own voice’ I intend to peel away some of the layers of legislative mystery. While the Seanad transcripts will give you the “record” of how various Bills pass through the House, I will give you a behind the scenes look at what really influenced and shaped some of the legislation I worked on.

Finance (Local Property Tax) Act 2012
In preparing for the Local Property Tax Bill in 2012 I knew that many children and youth JvT Speech 14 April 2015 Photo (3)organisations owned residential venues and was concerned they would face paying significant Property Tax bills. I rang the Department of Finance to explain my concerns. As it happened, the Official I spoke to had had a daughter in the Girl Guides and got exactly what I was talking about.  In December 2012 I tabled an amendment to the Bill to exempt venues owned by children and youth organisations from the Property Tax. The Minister for Finance, Michael Noonan TD, did not accept my amendment but did commit to come back with an amendment to achieve the same aim in a few months.  I took him at his word and in March 2013 he came back and granted the exemption and specifically cited Guiding and Scouting as an examples of why he was doing so.

As we all know, there is often a disconnect between law making and the practical reality on the ground.  There is no better feeling in the world than knowing you have bridged that disconnect and won a victory for civil society.

Protection of Children’s Health (Tobacco Smoke in Mechanically propelled Vehicles) Bill 2012
On New Year’s Day 201JvT Speech 14 April 2015 Photo (4)6, the Protection of Children’s Health (Tobacco Smoke in Mechanically Propelled Vehicles) Act of 2014 came into effect in Ireland. This legislation extends the workplace ban on smoking to all vehicles where children are present.  The impetus for this important legislative change was in fact the Protection of Children’s Health from Tobacco Smoke Bill 2012, which I initiated with Senators John Crown and Mark Daly with the support of John’s assistant Shane Conneely. We started the process optimistically in spring 2012 with a view to its passage before the summer recess.  Instead what ensued was months of tedious meetings and games of tag with John Crown stressing the urgency of the Bill, Mark working the political aspects and me bringing the children’s rights expertise but also the diplomacy necessary to calm the waters and steady the ship.  Each of us played to our strengths. In the end, some three years later, even though only a handful of words from our original Bill remained due to amendments but we got it over the line.

Adoption (Identity and Information) Bill 2014
Tens of thousands of Irish adoptees don’t know their original names, who their parents JvT Speech 14 April 2015 Photo (5)are or their medical history.  In November 2014 I co-sponsored legislation with Senators Averil Power and Fidelma Healy Eames to recognise the right to identity of adopted children.

As an adopted child, an adoptive parent and a children’s rights advocate, we each brought our own unique perspectives to the table.  Thanks to cross party support in the Seanad we persuaded Government to allow the Bill pass through Second Stage (no mean feat!!).

For those who are not au fait with the legislative process, there are 5 Stages in the passage of a Bill but it is the middle 3 that are the most substantive.  In short:

  • First Stage initiates the Bill and gets it on the agenda of the first House (Dáil or Seanad);
  • Second Stage is the general debate on the purpose, intention and scope of the Bill;
  • Third Stage (aka Committee) goes through the Bill section by section and considers individual amendments;
  • Fourth Stage (aka Report) allows you to review issues raised at Committee and table additional amendments; and
  • Fifth Stage (Final) sees a vote on entire Bill.

A successful Bill then goes to the other House, and follows stages two to five and then hopefully it is enacted into Law.  Many Bills, particularly those not initiated by Government, fall or stall at one hurdle or another…and some reappear as a Government Bill down the line!!

Back to our Adoption Bill and we are now at Committee Stage the third stage of the Seanad process.  Unusually, since we were the authors of the Bill, we had tabled a considerable number of amendments to address issues raised by the Minister for Children and Youth Affairs, James Reilly, at Second Stage.  Averil and I worked as a tag team and it was the one and only time I occupied the Fianna Fáil front bench seats in the Seanad.  It became clear as we were working through the amendments that the Minister and his officials had decided to neither engage nor oppose our amendments.

While this was allowing us to whiz through the changes we proposed it was all very bizarre.  It was at this point I got a text message from an Official in the House kindly pointing out that the schedule did not limit us from pushing the Bill through all stages.  So, following a speedy consultation with Averil, we agreed to give it a go but not before giving the Minister his opportunity.  I took to my feet and asked the Minister if he would be willing to engage with us on our Bill before Report Stages, which we were willing to take another day otherwise we would progress all Stages.

At the end of Committee Stage we asked again and there was still no comment.  So we pressed ahead to Report Stage and then with thanks to the Government Senators jumped the final hurdle and took the fifth and final stage.  These last two stages took all of 30 seconds maximum.

We now had a powerful tool in our armoury on the Right to Identity for all adoptees.    We had a Bill that had passed unopposed through all stages in the Seanad.  Surely the Dáil could pick it up and amend it if and where necessary.

Our efforts pushed the Minister and the Department to publish its own Heads of Bill on Adoption (Information and Tracing).   The Heads had come a long way from formerly stated positions. There are still obstacles, which were highlighted during the excellent hearings by the Health and Children Committee and detailed in its subsequent report.  There are over 50,000 adult children whose right to their identity could soon be realised.  This issue is a ticking clock as many are aging and many not see the legislation published let alone enacted.  It is urgent.

Immigration (Reform) (Regularisation of Residency Status) Bill 2014
Passing legislation is never easy and unfortunately things don’t always go to pJvT Speech 14 April 2015 Photo (6)lan! Case in point, a Bill proposed by Senator David Norris and myself to provide a pathway to residency for asylum seekers who have been awaiting a decision on their protection application for 4 years or more.  We had worked on the substance and intention of the Bill with a number of individuals and organisations working with refugees and migrants.  We knew the Bill we initiated wasn’t technically perfect but we hoped for the support of the House to move the Bill to Committee Stage where the necessary changes could be made.   However, Senator Norris and I were blindsided by Sinn Fein.  They had been approached by another NGO working in the area who did not agree with the use of the term ‘amnesty’ and so lobbied to block its passage.  Sinn Fein voted with Government against the Bill and we lost the passing of Second Stage by 1 vote.  We never expected our Bill to pass into law rather we saw it as an important opportunity to highlight the appalling reality of Direct Provision and to put pressure on the Department of Justice and Equality to act.

I appreciate the motivation of the NGO concerned but I still think it was a short sighted step that showed scarce respect for their fellow NGOs and more importantly removed an important lever to effect change.

Children and Family Relationships Bill 2015
The Children and Family Relationships Bill really illustrates the importance of JvT Speech 14 April 2015 Photo (7)collaboration and I wish to commend the Children’s Rights Alliance not only for their work on this Bill but for their unstinting support and expertise during my tenure.  Tanya Ward, Chief Executive, has proven her leadership, vision and acumen in spades since taking over the reins in 2011.

The Children and Family Relationships Bill was tabled and debated against the backdrop of the impending Marriage Equality Referendum.  This coloured much of the debate on the Bill but this legislation was so much more.  It represented the most significant reform of child and family law for a generation and finally put children at the heart of family law.

I watched in admiration as the Alliance united voices by forming a working group of members with diverse views to analysis and co-ordinate advocacy action.  They provided briefings and strategic communications at every level needed to effect changes to the Bill.  The Alliance built consensus amongst their membership, generated media and organised events.  Indirectly their work built consensus and support for the recognition of LGBT people as parents.  At this point, I also commend Minister Frances Fitzgerald TD, Minister for Justice and Equality who personally steered this legislation through both houses.  It took 30 hours in Seanad Éireann alone.

As I talk about the Marriage Equality Referendum one of my greatest regrets in office is that we could not embody the same level of public engagement when it came to the Children’s Referendum.  The closest I got to tapping into mass public sentiment was JvT Speech 14 April 2015 Photo (8)when I took on Child Beauty Pageants. I was inundated with support from parents and the public.  It showed me there is a strong public appetite to protect childhood but we haven’t been able to able make the link in the public mind with children’s rights.

Marriage Age
Not everything must be done through legislation. Tabling Motions under group speaking time can be equally effective.  In May 2014, we had a Seanad debate on the abducted schoolgirls in Nigeria that Boko Haram had threatened to sell into forced child marriage. I took this opportunity to voice my concern that exemptions to the marriage age in Ireland mean that, strictly speaking, child marriage is not prohibited here.

In June 2014, Senator Ivana Bacik brought forward a Motion calling on the Government to remove the court ordered exception to the legal age for marriage of 18.  Aware of my own interest in this children’s rights anomaly, Ivana invited me to second the motion and I detailed how in 2012 28 child marriages were permitted to take place in Ireland.  Just before Christmas the Government committed to setting the marriage age to 18 without exceptions.  I hope this is brought into law soon.

On a side note, I must take this opportunity to thank Ivana and wish her every success in her Seanad campaign.  I have grown in respect and admiration for Ivana – she is a great person to collaborate with. She’s whip smart and has an expert legal eye for legislative scrutiny.

My lowest moment
If you had asked me a few days before the Protection of Life during Pregnancy Bill I JvT Speech 14 April 2015 Photo (9)would have said that this would be my most tense vote.  The debate was fractious, bigoted and filled with misinformation.  Little did I know my toughest vote would be within hours of that vote.

To set the scene, we were now operating in a Seanad where the Government was in the minority and needed Independents or opposition to support them.   In the short period of 3 hours leading up to my toughest vote I was shouted at in the corridor, grabbed, cornered and at one stage even pinned up against a wall – all by opposition parties and independent members– who felt they could ‘bully’ me into voting a particular way.   On a side note we are all friends again.  The vote in question was on a motion to delay the passage of the Referendum Bill proposing the abolition of the Seanad.  If I voted with the opposition, we would delay the passage of the Bill for 90 days.  However, in my head all I could think was that only six months previously we were one vote short of delaying the passage of the Social Welfare Bill that brought in the cuts to the Respite Care grant. If we couldn’t get our acts together to frustrate this utterly unfair cut, how in good conscience could we justify delaying the passage of a Bill that was about keeping our own jobs!!

No one from Government approached me about my vote.  On pressing the button I voted with my gut.  Along with my colleagues Senators Marie Louise O’Donnell and Fiach MacConghail we made the difference and ensured the vote for the Referendum would be put to the people.  The footage of the day will show how I was jeered and shouted at by opposition for being a ‘traitor’.  Funny how they changed their view when the people of Ireland gave the Seanad a mandate.

IndependentJvT Speech 14 April 2015 Photo (10)
Being independent should not mean you are automatically in opposition.  As a Taoiseach’s nominee I had to work out what independence meant for me?  From the outset I believed it meant dealing with issues on merit. I voted with the Government where possible and clearly articulating my position where not. In the end we were operating in a minority Seanad and so each time I voted it counted – a power I had to use wisely.

Following my low point in the Seanad I was feeling increasingly isolated from both the Government Senators and Opposition Senators.  Some Government Senators felt I should automatically vote with them as I was a ‘Taoiseach’s nominee’.  Coupled with this I felt an increased sense of responsibility as the people of Ireland had voted to keep the Seanad.

So, I sought a meeting with the Taoiseach and despite everyone thinking we were in regular contact this took a few months to set up.  In fact, prior to this meeting the only advice I received from him was during my first days in office to pick a few key issues and stay on them if you want to effect change. Sound advice that I endeavoured to follow.

I met the Taoiseach and he listened.  I explained my frustration with the system, with trying to put forward amendments and feeling I was working in an echo chamber.  He repeated the advice he gave me when he first appointed me “I want you to be yourself and be Independent”.   It was only when I reached out that he leaned in to help and provide support to me.

Following this meeting he set up a weekly meeting for me with an advisor from his Department.  The only thing he asked was where possible I would give advance notice when I was not in a position to support the Government.  The payback for doing this was access to influence and in particular securing wins on a number of policy fronts.  At no stage during my time as a Senator has the Taoiseach ever tried to influence my vote.

Reform
There is much debate and talk about Reform.  I find most Members are very happy to JvT Speech 14 April 2015 Photo (11)discuss any aspect of reform that won’t directly affect their lives.   I believe that reform begins with the individual.  I decided when I started to take a new approach to politics and so used my social media – twitter primarily – to account for my work and I also publish each year a statement of my salary and allowances to ensure maximum transparency.   Indeed, each year I return the unspent portion of my allowance and as there was no procedure up until last year I had to ‘gift’ it back to the Department of Finance.

An example of some of the reform introduced in my time is pre-legislative scrutiny to a significant number of proposed laws.  This allowed for Committees to bring in experts, civil society groups, public officials and the Minister responsible to provide testimony.

Health and Children Committee
My experience is on the Health and Children Committee.  In reality only five or six members keep each committee going.  If you attend for one minute or three hours your attendance is recorded in the same way.  I was fortunate that my Committee was under the excellent chairmanship of Jerry Buttimer who ensured we worked collaboratively and respectfully.  I am very proud of our work, much of it in areas I have already highlighted, but additionally our hearings on End of Life Care. I hope the report we published will come to fruition.

Many NGOs supported my work at the Committee. A particular thanks to Chris Macey of the Irish Heart Foundation and Angela Edghill of the Irish Hospice Foundation.  Their advocacy expertise was so helpful especially in my early days as was Chris’s sage advice when I was faced with a legal threat from tobacco industry stooges.

In a similar vein, I was happy to draw on my European experience in challenging the alcohol industry and its attempts to frustrate and stymie legislative efforts to address alcohol related harm.  The drinks industry has a role – to make profits for its shareholders.  They have no role, whatever guise they choose to wear, in the formulation of health policy.   I think my views are clearly known.

Constituency
Senators shouldn’t have constituencies. Certainly not geographical ones.  As an independent Taoiseach’s nominee I definitely didn’t have one but I did endeavour to use the platform I was given to continue working with NG0s, civil society organisations, community and voluntary sector organisations and interested members of the public to JvT Speech 14 April 2015 Photo (12)help achieve our shared objectives.  I want to thank each and every one of you who has helped and supported Amy and I throughout the past five years across a broad range of issues. Your insight and expertise has been essential to the quality of our input and in helping us to convey the reality on the ground.

One thing I would stress to you is the importance of collaboration. It is the missed opportunity I see all too often in Leinster House. An organisation will come to meet me in my Seanad office and say “A is critically important” and then the next day another group within the same sector will come to me and say “B is the most important”.  These groups need to work together to determine and agree the priorities, not offer a choice for politicians to decide.

Coin drop machine
One of the greatest privileges of being a Senator is theJvT Speech 14 April 2015 Photo (13) opportunity to meet and engage with a wide range of peoples who bear witness to their personal circumstances.  We
have done so much damage in the past and the only way we can truly demonstrate we have learnt from our mistakes is through the actions we take now.  I wish I had a magic wand or a do-over. Instead I feel I am operating one of those coin machines you see in arcades.  You have to put a lot of coins in to hit the tipping point for change.

There are many issues where I feel I have put in a considerable amount of coins but we have yet to see progress. In particular, I highlight the situation for transgender, non-binary and intersex children.   In 2015 Ireland passed ground breaking gender recognition legislation into law.  However, it is silent when it comes to children under 16 –despite my efforts to introduce an interim gender recognition mechanism.   Minister James Reilly has committed his Department to doing more research in the area in time for the review of the Gender Recognition Act in 2017.  I am also sitting on a Working Group hosted by TENI and hope with several others to ensure children have a voice and a place in our laws.

Shelter
JvT Speech 14 April 2015 Photo (14)
I cannot leave today without mentioning the untenable homelessness crisis faced by children and their families, which is compounded by the shortage of social housing and the State’s failure to regulate the private rental sector.  It is incumbent on us to ensure all children – homeless children, children from the Traveller community and children in Direct Provision –  have secure and appropriate accommodation.

Corporal PunishmentJvT Speech 14 April 2015 Photo (15)I want to end on a high and the achievement of which I am most proud- havingchampioned and secured the effective ban on the physical punishment of children in Ireland.  A few months before this win a high level official in the children’s area told me that it would be impossible.  I succeeded by drawing on all in my armoury – all that I have amassed and using every ounce of social and political capital I had built up.   I have documented the official story in the Irish Journal of Family Law but let me take you behind the scenes here.

As early as 2011 I had spoken in the Seanad on the need for Ireland to repeal the defence of reasonable chastisement and I continued to raise the issue throughout my tenure. Behind the scenes I researched the issue, drew on International experiences and identified the piece of Legislation I would use as my vehicle.  The Children First Bill was perfect as it was about child protection and yet it contained no penalties or sanctions and so no one could say I was trying put parents in jail.  I also knew the Government would work to ensure this Bill was brought into law as it was a key plank of its reform of child welfare and protection.

The Committee Stage of the Children First Bill was taking place on 23 September last.  At 10am the previous day I met an Advisor and several officials from the Department of Children and Youth Affairs to discuss my amendments to the Bill.  Over the summer recess I submitted several substantive amendments and I had been waiting for this moment.  In our meeting I said I was willing to concede on the other amendments but that corporal punishment was my red line.  They tried very hard to dissuade me but I did not see any other Oireachtas Member willing to put their head above the parapet on this issue and so I had to do it before my time was up.  Even if I lost, I intended to force a vote and let the record show who in the Seanad was willing to be listed as saying it is acceptable to hit children.   It was a tense meeting.

At 4pm that same day, I was invited to meet Minister Reilly and the Secretary General of the Department.  My persistence on the issue meant he had spent the day trying to find a way forward through discussions with his officials and the AG.  In that meeting he gave me a commitment he they would do the change but I needed to buy them some time to work out the how.  We agreed that I would postpone a vote at Committee Stage but one way or the other we would be voting on an amendment at Report Stage.

I had been working with the NGOs and in particular the Children’s Rights Alliance, ISPCC and Mummy Pages who were all outstanding in playing a subtle but vital role in getting the ban on corporal punishment over the line. It worked, with thanks to my fellow Senators who all supported me; the NGOs and children’s rights advocates; and some really outstanding civil servants and advisors.

Through this action the Government has put children first and provided leadership that will hopefully give confidence to other countries across the globe, including our nearest neighbours, to protect children from violence.

There is so much more I could mention but let’s keep it for another day!  It has been a roller-coaster ride that I feel so privileged to have been on. I learnt so much, not least how to hold my nerve and persevere with my eyes fixed firmly on the goal.  I believe I made the most of the opportunity.  I worked extremely hard to effect the most change I could. I don’t know what my future holds but as ever I am optimistic and confident that I will rise to my next challenge.

I would like to thank my fellow Senators from across the house for their collaboration and cooperation.  It has been an immense honour.  Most of all I wish to thank all of you for your input and support during my tenure.    Thank you the Children’s Rights Alliance for giving me an opportunity to share my experiences and to the Ark for providing such a wonderful venue.  Thank you ALL.

END

Assisted Decision-Making (Capacity) Bill 2013: Report and Final Stages

I move amendment No. 3:

In page 10, between lines 24 and 25, to insert the following:” “best interpretation” means the interpretation of the relevant person’s past and present communication (using all forms of communication, including, where relevant, total communication, augmented or alternative communication, and non-verbal communication, such as gestures and actions) that seems most reasonably justified in the circumstances;”.

The Minister of State is extremely welcome to the House. Before I speak to this amendment, I want to congratulate her on her work on the mental health (amendment) Bill which seeks to remove the use of coercion in the application of ECT. I acknowledge that a Bill was published by the former Senator, Dan Boyle, as she knows, and I would particularly like to pay tribute to my cousin John McCarthy, God rest him,I can almost hear him using wonderfully colourful language and including words “about time” but it is great that this Bill will be progressing and well done to the Minister of State for doing that.

In association with my colleague, Senator Katherine Zappone I want to acknowledge the support of NUIG Centre for Disability Law and Policy and Tallaght Trialogue. While most people simply require recognition of their legal capacity and support to express their will and preferences there will still be a small minority of individuals who are not expressing a will and preference in a manner that others can understand. The Bill must establish the lawful response to such circumstances. However, I do not believe that a functional assessment of a mental capacity, and a subsequent denial of legal capacity, is the correct response to these difficult situations. A person in a coma or in a minimally conscious state, for example, will not be communicating their will and preferences to others and may not have made their wishes known in advance through an advanced health care directive or granted a power of attorney to anyone in respect of their relevant decision.In these circumstances decision making assistants, co-decision makers, decision making representatives, attorneys or designated health care representatives may need to make a decision on the relevant person’s behalf in accordance with their best interpretation of his or her will and preferences. While the Bill does require all interveners to respect the person’s will and preferences as part of the guiding principles included in section 8, further reference to the concept of best interpretation of will and preferences is needed for the hard cases in which it is very difficult to tell what a person’s wishes are.

The term “best interpretation” needs to be defined in section 2 of the Bill to guide those in the supportive roles I have outlined. Best interpretation of a relevant person’s will and preferences means taking into account past express preferences, where known, and includes knowledge gained from family and friends and other evidence available. Best interpretation can also be arrived at in seeking to communicate with the person in every possible way, including by using, where appropriate, assisted and augmentative communication, facilitated communication, signs, gestures and total communication, all of which are noted in the regulations and code of practice.

The use of best interpretation will rarely be an easy task. However, the best interest determinations used currently are similarly difficult in these circumstances. The provisions of Article 12 of the UN Convention on the Rights of Persons with Disabilities are merely shifting these difficult decisions from focusing on judgments existing outside the individual to the individual’s own will and preferences. That is why I am trying to insert a definition of best interpretation. We do need to deal with the hard cases, too.

I move amendment No. 6:

In page 15, to delete lines 10 to 36 and substitute the following:“3. (1) Legal capacity may be exercised:
(a) by the relevant person with decision-making supports as needed (including a decision-making assistant) and/or reasonable accommodation; or

(b) by the relevant person and their co-decision maker, acting jointly; or

(c) in a situation of last resort, where all efforts to ascertain the relevant person’s will and preferences have been made and the relevant person’s will and preferences remain not known, legal capacity may be exercised by the person(s) selected to represent the relevant person in exercising the relevant person’s legal capacity (i.e. decision-making representative, attorney, or patient-designated healthcare representative in advance healthcare directive).
(2) Where legal capacity is exercised with the support of a decision-making assistant, codecision-maker, or is being made by a person selected to represent the relevant person (decision-making representative, attorney, or patient-designated healthcare representative), and where the relevant person’s will and preferences are not known, the decision shall be guided by the individual’s best interpretation of the relevant person’s will or preferences and how these are to be applied to a specific decision(s).

(3) In applying subsection (2), decision-making assistants, co-decision-makers and persons selected to represent the relevant person must be able to provide a reasonable account of how this interpretation was arrived at.”.

I propose this amendment to change the definition of “capacity” in the Bill and to move away from a functional test of mental capacity which is used in the current text of the Bill to deny the legal capacity both of adults with disabilities or mental health experiences and of older people. The amendment would replace the definition of “mental capacity” in the Bill with a recognition of the legal capacity which all adults enjoy.

This amendment is based on the explicit recognition of legal capacity and the principle set out by the UN Committee on the Rights of Persons with Disabilities that a functional assessment of mental capacity should never be used to restrict or deny a person’s legal capacity, even in respect of a single decision. The amendment draws on a proposal contained in A Statutory Framework for the Right to Legal Capacity and Supported Decision-Making by the Canadian Association for Community Living, CACL, which was published in 2012. The CACL was a key actor in the reform of Canadian adult guardianship law in the 1990s.It resulted in innovative statutory mechanisms such as co-decision-making and representative decision-making agreements, which influenced the Assisted Decision-Making (Capacity) Bill here.

Functional assessments of mental capacity are now understood to violate human rights. In the terms of the United Nations Committee on the Rights of Persons with Disabilities, functional assessments of mental capacity are “discriminatorily applied to people with disabilities”. In April 2014 the committee stated:

[The] functional approach is flawed for two key reasons. The first is that it is discriminatorily applied to people with disabilities. The second is that it presumes to be able to accurately assess the inner-workings of the human mind and to then deny a core human right – the right to equal recognition before the law – when an individual does not pass the assessment. In all these approaches, a person’s disability and/or decision-making skills are taken as legitimate grounds for denying his or her legal capacity and lowering his or her status as a person before the law. Article 12 does not permit such discriminatory denial of legal capacity, but rather requires that support be provided in the exercise of legal capacity.

Instead of requiring a person who needs support with decision-making to undergo an assessment of his or her mental capacity, these supports should be provided for the person to avail of at his or her own discretion. The availability of supports should also be combined with a parallel process to explore the person’s will and preferences, something we have debated quite a lot on the floor of the House, so that the decision the person wishes to make becomes clear. This approach avoids any need for an assessment of mental capacity.

Section 3 of the Bill makes a person’s ability to enter into different support arrangements contingent on the individual’s mental capacity. This is quite a high standard for an individual to reach and will mean that some people will not be found eligible to make assisted decision-making agreements and co-decision-making agreements, even where this is the form of support the individual and his or her supporters would most likely use.

Under the Bill in its current form, the term “presumption of capacity” is used to try to prevent discriminatory application of functional assessments of mental capacity. However, two international human rights scholars, Oliver Lewis and Michael Bach, stated at a meeting in Belfast in April 2014 that a presumption of mental capacity is meaningless as it does not help to protect the individual’s human rights. They argue that the right to equal recognition before the law, from which the right to legal capacity stems, is a guarantee, not a presumption. In contrast, a presumption can be rebutted if evidence is provided to demonstrate that a certain individual is not worthy of equal recognition before the law.

This amendment is required to ensure Ireland meets its obligations under international human rights law and will, upon ratification, comply with Article 12 of the UN Convention on the Rights of Persons with Disabilities, which we all wish to do. This is why I have tabled the amendment.

Full debate https://www.kildarestreet.com/sendebates/?id=2015-12-15a.222&s=speaker%3A393#g287

Public Health (Alcohol) Bill 2015: Second Stage

I welcome the Minister to the House on this, our penultimate day of term. I heartily welcomed the initiation of the Public Health (Alcohol) Bill. As did Senator Burke, I participated in the hearings of Oireachtas Joint Committee on Health and Children on the scrutiny of the heads of the Bill. We covered the aspects of the Bill and I thank the Minister for taking on many of the committee’s recommendations in what we see today. It does show pre-legislative scrutiny works. The Bill is about reducing alcohol-related harm, improving people’s health and, ultimately, saving children’s lives. From my reading, a children’s rights focus is evident throughout the Bill.

I acknowledge and thank the Alcohol Health Alliance Ireland, which is spearheaded by the Royal College of Physicians of Ireland and Alcohol Action Ireland, for its work and advice to me in this area. In all of our debates on alcohol, even those on reducing the alcohol-related harm which we all agree is extensive and needs tackling, we feel we need to clarify that we are not anti-alcohol. This is because our relationship with alcohol is so twisted into our culture and psyche we do not wish to be portrayed as judgmental and anti-fun. I have been rapporteur for two EU reports on the issue of alcohol-related harm. I have seen the drinks industry in action first-hand so I have no doubt of the pressure it must have put on the Minister. At EU level, I was on the European Economic and Social Committee, which was small, and the industry tried to silence me and discredit me and undermine the work of the NGO for which I worked. Thankfully, the majority of my colleagues on the committee were willing to stand with me and face down the vested interests and defend the public good. This is what we are trying to do with the Bill.

My entry point to the issue is the impact of alcohol-related harm on children. Four in ten children in Ireland are at risk of being adversely affected by alcohol misuse. Four in ten child protection cases are associated with alcohol misuse. It is a significant contributor to the neglect and abuse of children, to domestic and sexual violence and family breakdown. I welcome the support for the Bill and its harm reduction measures from several sectors of the industry in Ireland, including the vintners’ associations, the majority of publicans, the National Off-Licence Association and the C&C Group.

I use the term “drinks industry” but I speak more about the giants who see Ireland as a small pawn in the global drinks industry. The drinks industry speaks about responsible drinking, but the way we drink in Ireland is only responsible for the huge profits the industry makes here every year. As soon as the Minister launched the Bill I could almost hear the smoke machine of the drinks industry spluttering into action and, through its puppet drinkaware.ie, a soon to be launched rebranding of MEAS, talk about the importance of education. We see drinks industry initiatives all the time and the involvement of the drinks industry in public health campaigns despite clear and definitive statements from the World Health Organization that it should have no role in public health initiatives.

Drinkaware.ie is funded by Diageo, Heineken and Irish Distillers. Earlier this year we saw it advertise for an education programme manager to head up an education programme targeting young people, parents and teachers. This is completely inappropriate. If I put it this way, who would entertain the idea of an education programme about the dangers of smoking being designed and delivered by an organisation that is funded by tobacco companies? We cannot let the drinks industry in whatever guise it manifests itself to go into schools and purport to educate our children about the usage of a substance on which its entire profit is made. I hope the Department of Education and Skills takes a firm stance. I have tried to raise this issue several times in the Seanad. There is no safe level of alcohol consumption for children and this is the clear message we must send. We know education informs our behaviour, but it does not influence our behaviour. It is the actions contained in the Bill which will change and reduce alcohol consumption.

I have no doubt that, as has happened in Scotland, the industry will go to court if it feels it can delay or frustrate the implementation of the Bill. In my opinion, this tells us the Minister is on the right track. With regard to sponsorship and sport, the drinks industry spends £800 million a year in the UK on advertising, and research has shown that children there as young as ten are familiar with, and can readily identify, alcohol brands, logos and characters from television. In many instances, recognition was greater for alcohol brands than for non-alcoholic products targeted at children. This tells me a lot. The study also provided new evidence that many children are familiar with the link between alcohol brands and the sports teams and tournaments they sponsor. This is why I welcomed the initiatives the Minister is taking. He knows my position, which is I would love to see a full ban, but I welcome what he is doing in this area to try to reduce the impact on children.

It was very interesting that in the days after the Bill was launched we saw a headline stating it would undermine the rugby World Cup. I cannot see the evidence for this. We have seen the rugby World Cup successfully held in France, which has a ban, and it made a profit. It made me think of FIFA, because it has influenced legislation in Brazil. Brazil has a law whereby alcohol is not sold in stadia, but a change will be made to enshrine the right to sell beer. Surprise, surprise, Budweiser is a big sponsor of FIFA. When the ban on tobacco sponsorship of sport was introduced we were told it would be the end of golf championships, and we would never see again championships such as the Carrolls Irish open. This has been disproved. It can still happen.

With regard to minimum unit pricing, over the past several years the alcohol strength of drinks has increased greatly. The alcohol strength of beers and wine has increased. The pricing the Minister will introduce is within the power of the drinks industry. If it reduces the alcohol strength we will not see price increases. It is simple because it has the power. The introduction of minimum unit pricing will not have an impact on people who drink alcohol in pubs, clubs and restaurants. We are speaking about off sales. People who drink alcohol purchased in supermarkets and consume it within the safe limits will pay 30 cent a week more, which is €15.70 over a full year, with minimum unit pricing. The difficulty is that people drinking cheap high-strength alcohol purchased in supermarkets and other retailers will notice, but we know this is what causes the most deaths, injuries, accidents and incidents. I recommend as reading the University of Sheffield report, which the committee dealt with during its hearings. We know minimum unit pricing works because we have seen it work in Canada.

I welcome what the Minister is doing with labelling. We very much see the importance of people having information. After we discussed it at the committee, we started looking more at labelling on bottles and we can see the misinformation, deliberate or not. It is very difficult to make informed decisions. For the first time, labels on alcohol products will include information which will tell consumers what they are consuming and the impact on their health and weight. More than 90% of Irish adults do not know what is meant by a standard drink. I must look it up and I am involved in the area. A total of 95% of people have said they support the labelling initiatives. The Minister knows I have raised with him the issue of cancer, and we know that alcohol is associated with 900 new cancer cases every year and 500 cancer deaths.

There is an issue with regard to structural separation, which the committee considered and brought to the Minister. I have read the explanatory memorandum which comes with the Bill. The Minister is taking a very pragmatic and easily implemented approach and I commend him for it. We have seen seepage in supermarkets with meal deals which normalise drinking wine every day. I commend the Minister on the pragmatic approach being taken. We will get to tease out each aspect of the report on Committee Stage and I say “Well done” to the Minister in respect of the children’s clothing issue also. We see the seepage on that matter throughout department stores. The Minister has my full support.

Full debate https://www.kildarestreet.com/sendebates/?id=2015-12-17a.93&s=jillian+van+turnhout#g103

Commencement Matter: Neuro-Rehabilitation Services Provision, 2 December 2015

Senator Jillian van Turnhout: The Minister of State is aware that I have been tracking the issue of neuro-rehabilitation services for several years now. Such services are essential to support recovery and prevent disability for people with acquired brain injury, stroke, multiple sclerosis and a range of other neurological conditions. Thousands of Irish people still cannot get the rehabilitation they need when they need it. They face a lifetime of unnecessary disability, which can prevent them from returning to work and regaining their independence. It is estimated that there are 25,000 patients in need of rehabilitation in Ireland.

I have raised this issue because I am concerned about the deficits that exist in this area such as, for example, with regard to community teams. Since the three-year national strategy was published and came into place, little or progress has been made to deliver on any of its recommendations. For example, nine neuro-rehabilitation teams are needed in the community, but just three partially staffed teams are currently in place. No new teams have been established since the strategy was published in 2011. On the basis of the guidelines set by the British Society of Rehabilitation Medicine, our population means that 270 specialist inpatient beds are needed in this country. We currently have less than half of that number.

If we look at other rehabilitation services, we have a lack of longer-term rehabilitation supports, such as step-down units, transitional units and intensive home care packages, to allow people to go home after rehabilitation has come to an end. This means they end up in totally unsuitable facilities. For example, young people have to live in nursing homes, in acute hospital beds or in long-stay units with no ongoing rehabilitation. It is important to remember that people with neurological conditions need intensive therapy within a window of recovery. I know the Minister of State is aware of this. Those who are waiting to get specialist rehabilitation lose vital recovery time every day of their waiting periods. The National Policy and Strategy for the Provision of Neuro-Rehabilitation Services in Ireland 2011-2015 was published by the Department of Health and the HSE in December 2011. A joint HSE and Department of Health working group was established in 2013 tasked with the development of an implementation plan. Earlier this year, the HSE committed to releasing a draft implementation plan for consultation in December 2015. I now understand this will not be released until 2016, which is why I have tabled this matter. Separately, a model of care for specialist rehabilitation services is being developed by the national clinical programme for rehabilitation medicine. The draft of this model of care is being reviewed by the HSE following its submission in September 2015 and no date is available for its publication. Without the publication of the implementation plan for a neuro-rehabilitation strategy no money is being invested, no services are being put in place and thousands of people are not getting the rehabilitation they need. Yesterday, Mags Rogers of the Neurological Alliance of Ireland spoke about condemning people to live with an unnecessary disability. We are speaking about the vital window of recovery. As I have tracked this issue it has been a catalogue of delays, U-turns and no implementation plan. I have met many people in recent years whose quality of life would have been greatly improved if we could have intervened earlier. We have a strategy. Why do we not have a plan and why are we not implementing it?

Deputy Kathleen Lynch: We had difficulty at the outset, which I encountered very quickly, apart from having no money which was the biggest difficulty of all, as there was a difference of opinion as to how it should be delivered. It is very difficult to say to one specialist that what he or she is saying is wrong and say to another specialist that he or she is right. There was a clear difference of opinion as to how it would be delivered. This is why the implementation plan and the national clinical programme are so important.

The report, National Policy and Strategy for the Provision of Neuro-Rehabilitation Services in Ireland 2011–2015, made a number of recommendations for services for people with rehabilitation needs, including clinical, therapeutic, social, vocational and community supports. Following the development of the report, the Health Service Executive established the rehabilitation medicine clinical programme. The scope of the programme covers the whole of the patient’s journey from self-management and prevention through to primary, secondary and tertiary care. This provides a national strategic and co-ordinated approach to a wide range of clinical services. The programme includes the standardisation of access to and delivery of high-quality, safe and efficient hospital services nationally as well as improved linkages with primary care services. This is where the dispute arose with regard to whether it was better to do it within the community or whether it should be attached to an acute hospital.

The rehabilitation medicine clinical programme is nearing completion of a model of care for the provision of specialist rehabilitation services in Ireland, which will be the basis for the delivery of the service. The HSE disability services division has a role in certain key aspects of neuro-rehabilitation services, primarily the provision of community-based therapy services and personal social services. The disability services division will use the recommendations of the value for money and policy review of disability services to focus on disability funded rehabilitation services and enable reconfiguration of existing provisions through the establishment of demonstration sites. Close links will be maintained with the rehabilitation medicine clinical programme to ensure there is no duplication of effort and that all initiatives receive optimal support. Demonstration sites have been identified by disability services and mapping has commenced.

Having regard to the foregoing details, it is not accurate to say that no element has been delivered. A national steering group, chaired by the Health Service Executive social care division, has been assigned the task of developing an implementation framework for the national policy and strategy for neuro-rehabilitation services. The steering group includes representation from the national clinical programmes for rehabilitation medicine and neurology, the Department of Health, primary care, therapy professions and the Neurological Alliance of Ireland. Once the implementation framework has been agreed by the steering group, it will then go for consultation to the wider stakeholder interest groups. Following consultation, the framework will be revised and will guide and oversee the reconfiguration and development of neuro-rehabilitation structures and services at national and local level. The HSE is very aware of the needs of people with neurological conditions – how could it not be – and will continue to work towards improved services, making best use of available resources.

The disability sector is now connecting, and yesterday I met Enable Ireland which could play a very big part, and we all know the other non-governmental agencies with a particular interest in this area. The new hospital in Dún Laoghaire is on its way and it will provide not only outreach therapies but additional beds. It should have been done ten years ago, and the Senator and I know this, but with regard to thrombolysis, while prevention in accident and emergency department has played a significant role, much more needs to be done.

Senator Jillian van TurnhoutI agree with the Minister of State. As she knows I have been tracking this issue since I entered the Seanad. With regard to the people living with acquired brain injuries, strokes, multiple sclerosis and a range of other neurological conditions, if we got in during the window of recovery, we would not be speaking about disabilities but recovery. I said no element has been delivered, but for those looking for services during that period, they are not in place. It is not good enough and we must do more. I appreciate what the Minister of State said. We should see the implementation plan. We must give people hope, and the services should be in place in the way they are needed whether in the community or in settings. The pathway will very much depend on need. I will continue to track the issue for the remaining weeks I am here because it is an issue close to my heart, because of my father and because I have met too many people who would not be suffering every day if we had been able to intervene earlier.

Deputy Kathleen Lynch: I believe some of it has been put in place, based on a personal family experience. There is not one of us who will not have had such an experience as we go through life in whatever form. This will have involved going to an accident and emergency department at 12 o’clock on a Saturday and walking out, having been discharged, at 12 o’clock that night.

Senator Jillian van Turnhout: That is the window of recovery.

Deputy Kathleen LynchThe difficulty is that it is like suicide in that we will never know how many people we divert from the path of disability. It is difficult to know. However, we need to treat differently those whom we do not divert. The implementation plan and strategy must be published as quickly as possible.

Senator Jillian van Turnhout: On that we agree. The plan must be published.

Questions to Minister for Health: Tax on Sugar Sweetened Drinks

Questions to Minister for Health Leo Varadkar TD, Minister Lynch and HSE in advance of Health and Children Committee meeting 6 October 2015

Letter from Senator van Turnhout to Minister Noonan: Letter to Minister for Finance TaxSSD by Jillian van Turnhout

Senator Jillian Van Turnhout
To ask the Minister for Health if he supports proposals for an additional tax on sugar sweetened drinks in the upcoming Budget and the use of a portion of the funds to promote children’s health initiatives; what actions he has taken to convince the Minister for Finance to implement these proposals; and if he will make a statement on the matter.

Response:
The Minister for Health has recently written to the Minister for Finance recommending the introduction of a 20% levy on sugar sweetened drinks (SSDs) in the proposed Budget for 2016.  The rationale behind this measure is on the grounds of increasing evidence that consumption of SSDs is related to the risk of obesity and that such beverages are a source of high energy yet little or no nutritional value.  The Minister supports the introduction of such a levy as one of a number of public health measures in tackling obesity.  In addition, the Department is currently developing a new Obesity Policy and Action Plan, which will address prevention, treatment and research.

Questions to Minister for Health: Early Supported Discharge programmes for stroke survivors

Questions to Minister for Health Leo Varadkar TD, Minister Lynch and HSE in advance of Health and Children Committee meeting 6 October 2015

Senator Jillian van Turnhout
To ask the Minister for Health if he will ensure that Early Supported Discharge programmes for stroke survivors are expanded by the HSE in 2016; what other actions he intends taking to develop community rehabilitation services for stroke survivors; whether he is concerned that the implementation plan for the National Neuro-Rehabilitation Policy and Strategy 2011-2015 has not yet been finalised with just four months left in its four-year lifespan; and if he will make a statement on these matters.

Response:
Currently there are 3 Early Supported Discharge (ESD) teams in Dublin North, Dublin South West and Galway respectively. These teams though small are functioning well.

The programme plans to increase the ESD teams over the coming years in larger urban areas first and then progress this expansion to less urban areas with a modified team to serve these areas, however resources are currently unavailable for this.

The National Policy & Strategy for Neuro-Rehabilitation 2011-2015 recognises the various possible challenges and the working group proposed an initial 3 year implementation plan.  Since the initial estimate of a 3 year implementation plan, the HSE has seen significant changes with the development of the Hospital Groups and the Community Healthcare Organisation configuration. This has changed the landscape within which services are to be configured to support implementation of this much needed strategy.

Currently, a steering group led by the HSE Social Care Division with representation from the National Clinical Programmes for Rehabilitation Medicine and Neurology, Department of Health, Primary Care, Therapy Professions & Neurological Alliance of Ireland has been assigned the task of developing an implementation framework for the National Strategy & Policy for Neuro-rehabilitation services. This group is working on finalising an implementation framework which will be released for consultation in Q4 2015.

The work of the steering group is overseen by an operational lead and a clinical lead with the group proposing a 2 phased approach to implementation which will begin at CHO level and expand to inpatient specialist rehabilitation services with connectivity across all service delivery sites.

The Model of Care of the National Clinical Programme for Rehabilitation Medicine (NCPRM) will be one of the primary reference points for the implementation of the Neuro-Rehabilitation strategy, given the importance in ensuring consistency and clarity in pathways to and across services.  The model of care of the NCPRM will provide a framework for the design and delivery of specialist rehabilitation services in the context of a strategy that addresses the broad continuum of services and supports required by those with neuro-rehabilitative needs.

The Model of Care for the NCPRM, which is currently being finalised post public consultation, details the role, function & benefits of these care teams, in line with the recommendations contained within the National Strategy & Policy for Neuro-rehabilitation Services in Ireland 2011-2015. This model of care proposes a 3 tiered model of specialist rehabilitation services namely complex specialist tertiary services, specialist in-patient rehabilitation units & community based specialist neuro-rehabilitation teams.

Both the National Clinical Programme for Rehabilitation Medicine and the National Policy & Strategy for Neuro-rehabilitation propose a needs-led service that meets the rehabilitative needs of people at acute, post-acute and community levels of people at all stages of the lifecycle who may benefit from medical, physical, cognitive, psychological and/or social Neuro-Rehabilitation service provision.

In this regard, it is not condition specific. While those who have suffered a stroke will be within the scope of this policy, services will not be exclusively for stroke survivors.

 

Questions to Minister for Health: School leavers with disabilities accessing services in North Dublin

Questions to Minister for Health Leo Varadkar TD, Minister Lynch and HSE in advance of Health and Children Committee meeting 6 October 2015

Senator Jillian Van Turnhout
To ask the Minister for Health if he is aware that 40 recent school leavers with disabilities in North Dublin, many in the highest category of support need, were informed on 30 June 2015, contrary to the HSE’s Social Care Operational Plan, that there was no service available for them moving forward. When will the situation be resolved for these young people whereby they are engaged in a service that meets their individual needs and will family members have a choice in the service that their family member attends.

Response:
Since the establishment of the Social Care Division in the HSE, significant progress has been made in improving on the planning and co-ordination on the annual allocation of places to school leavers and those young people exiting rehabilitative training (RT). This process has worked well and significant improvement has been made over the past number of years.

In line with these new arrangements and as set out in the Social Care Division Operational Plan 2015, the HSE undertook a mapping exercise to identify individuals who require a day service in 2015; the type of service that is required and the extent to which supports can be delivered within existing resources.

The data collected from each CHO Area indicated the following need:-

Client Status – RT / School Leaver
HSE CHO Area RT Leaver School Leaver Total
CHO Area 1 35 83 118
CHO Area 2 32 77 109
CHO Area 3 27 81 108
CHO Area 4 52 203 255
CHO Area 5 61 128 189
CHO Area 6 34 63 97
CHO Area 7 66 108 174
CHO Area 8 41 111 152
CHO Area 9 32 106 138
Total 380 960 1340

In summary:

  • 1,340 adults require a funded placement in 2015.
  • Capacity was identified to meet the needs of 508 of these individuals, from the existing services, resulting in a balance of 832 people that required a newly funded day service from the €12m allocation.

As a comparison, in 2014 1,365 people were identified as requiring services.  Capacity was identified to meet the needs of 734 people from existing services and the balance of 631 required funding from the 2014 allocation. Therefore in 2015, an additional 201 people require a funded day service response over 2014.

The current position is that 1,305 young people have had their place confirmed.  A difficulty arose in respect of 35 young people – 23 of these related to a problem in securing services at Gheel Autism Services in North Dublin, with a further 12 whose placements remain to be finalised principally awaiting capital development of new locations which will be available shortly.

The difficulty which arose in respect of the 23 young people was that they were referred to Gheel Autism Services as their preferred provider.

This provider informed the HSE during the month of August that they were unable to provide the service within the funding allocated and without a significant additional resource to expand their organisational governance structure and staffing.

On receipt of this confirmation the HSE took immediate steps to engage with two other providers of services to people with ASD which have the required competence and expertise to deliver the appropriate specialist services (the two providers are Autism Initiative & Praxis). The HSE communicated with the 23 families and put them in contact with the newly identified providers.

These two providers have undertaken assessments for each individual and have committed to providing an appropriate service for each individual within the allocated resources.

The current position is that 21 of the 23 young people involved have agreed to take up the new services referred to above while 2 people remain to have an agreed service provided.  There is active engagement with the 2 families and the relevant providers and it is expected that a positive solution will be forthcoming very shortly.

It is regrettable that this difficulty has arisen in North Dublin.  However arrangements have now been put in place to resolve these challenges and overall 98% of the 1,340 young people requiring services have had their places confirmed.  The HSE will continue to work actively to ensure that the remaining young people have their places confirmed as soon as possible.


Gender Recognition Bill 2014: Report and Final Stages 15 July 2015

As always, the Minister of State is welcome to the House. I thank the Tánaiste for her commitment to the issue of gender recognition and thank the Minister of State for the energetic and robust debates we have had here in the Chamber and outside. I join other Members in welcoming the distinguished guests who have joined us here today, in particular Dr Lydia Foy and Michael Farrell. As I look at each face in the Visitors’ Gallery and think of the journey I have been on, I note that I did not know the majority of these people a few years ago, but now I feel I know them as friends. They have had to share their life stories with me for me to understand what we are debating here today and see the importance of today. That says a great deal. I have met some really amazing and brilliant people.

As the Minister of State knows, I have met many parents and children directly affected by this issue. While I am really happy today and recognise that is a great day, it is a bittersweet moment for me. It brings me back to my childhood when teams were being picked. There is a team getting on the human rights bus that is going. They are the adults and they are going to get it but the children did not get picked. That feeling of children being left out in the cold…yet again… makes it very difficult for me again today that we did not do anything for children, even though we had that opportunity. As we meet today, young people organised by TENI are meeting on the issue. BelongTo has a group of children meeting on this very issue. It is not that these children do not exist; they do. The Minister of State and I have met the parents and we know the real issues they face.

I will not go back over and rehearse every issue, but there have been developments since we debated the issue in the House in February. The calls I have made were informed and very much supported by organisations such as TENI and BeLonG To but also by the ISPCC, Children’s Rights Alliance, NYCI, SpunOut, Epic, Amnesty and the USI, just to name a few. Indeed, at its parliamentary assembly, the Council of Europe issued a resolution on discrimination against transgender people in Europe and said we needed to ensure that the best interests of the child are a primary consideration in all decisions concerning children. This is on transgender people; I am not picking something out of place. Indeed, since we have been debating the matter, Malta has passed gender identity, gender expression and sex characteristics legislation which ensures that children are free to live as they wish and are only required at the age of 14 to provide a gender for their birth certificate. In Norway, the Government has proposed legislation for pre-legislative scrutiny, not some independent Senator, to look at gender recognition from age seven. I welcome the commitment the Minister of State made in February to have the roundtable among education partners and I welcome the fact that one meeting has happened, but it is only one meeting. No education partners have been contacted on the issue of transgender children. We will face September again and there will be children who cannot live as they wish and go to the schools they wish to attend because they are being actively blocked.

Much has been made of the marriage equality referendum, which was a joyous and tremendous day, but there was also the children’s referendum which took two years for the Supreme Court to clear. That is the lens we also need to be looking at. We need to ensure that our legislation is also looking at that lens. The Government’s national policy framework for children and young people, Better Outcomes, Brighter Futures, is a whole-of-government document, not just one relating to the Department of Children and Youth Affairs. It very clearly sets out that the development of laws, policies and services should take into account the needs, rights and best interests of children and young people. It says that efforts should be made to involve children and young people in policy and decision-making processes. While that is Government policy, we saw in this process that children were excluded from the debate at the pre-legislative scrutiny stage. I have gone over my notes to confirm that. There was no good reason for it. I have gone back over the e-mails and the Acting Clerk of the Dáil has confirmed that they should have been allowed to give testimony at those committee hearings, but were not. We did not allow their voices to be heard, and we should not have done that. Other committees allow children to appear before them.
As I said, the best interests of the child should be our paramount consideration, taking account of the views of the child and the evolving capacity of the child. I proposed an interim gender recognition certificate where everybody is ad idem, that is, the parents, the child and an independent person, be that the Minister, a general practitioner or a court. Obviously, that was not successful. It was brought forward again in the Dáil. That led me to read the debates in the Dáil on Second and Report Stages, in particular. It was noticeable that Members of all parties and none raised the issue of children and the importance of including children in the Gender Recognition Bill. There was one exception, the Labour Party. Its Members did not, so perhaps it is Labour Party policy. I do not understand. I have read through all of the transcripts and no Member from the Labour Party raised this issue. I am still at a loss. The European Region of the International Lesbian and Gay Association gave really compelling testimony before the 29th Human Rights Council. Obviously, it welcomed what we are doing in Ireland but also noted that there was no process for legal recognition of minors under 16 years of age. These children exist and they deserve protection. A parent of a six year old trans girl said: “I just want to keep this child alive. I have a happy child now, why end up with a dead child? It’s important that she gets documents that reflect her gender.”

The difficulty for me, to which I have not received a satisfactory answer, is relevant to the court case S. v. An Bord Uchtála in 2009.  The case involved an intersex child born abroad, who had been registered as female at birth. The judge made an order to allow an amendment of the register of foreign adoptions so that the child’s paperwork would reflect his gender of rearing as a boy and enable him to be enrolled in the local boy’s school. The difficulty is that because this Bill excludes children, are we saying to the courts that we do not want them to interfere or do anything on children? We are closing the door on this. As a legislator, I believe we are sending a clear message to children that we will not talk about gender recognition. That is a problem for me. I am also worried about one of the amendments from the Dáil regarding passports. Again, I have dealt with some cases where children have got their gender changed, not on their birth certificate but on their passport. This amendment will not allow that to happen. Even more children have been squeezed out of this. There are four to five children a year who will not now be able to get a passport in the gender they wish because we have tightened the knot again and really made sure that children are firmly outside the room when it comes to gender recognition.

In conclusion, the Minister for Children and Youth Affairs wrote to the Tánaiste and Minister for Social Protection and proposed written amendments. I appreciate that she did not feel she was in a position to accept those amendments. Is the Minister saying that this is now under the remit of the Minister for Children and Youth Affairs? If it is, I will table amendments to the Children First Bill. This must be made clear because I do not wish to be told when we debate the Children First Bill that it should have been done in the Gender Recognition Bill or that it should be done by the Minister for Social Protection. Will the Minister clearly state whether this is in the remit of the Minister for Children and Youth Affairs? When will the meeting with the education partners take place? I am not asking for an exact date, but a timeframe for when it will take place.

One of the proposals sent by the Minister for Children and Youth Affairs was that we would explicitly state that children and young people would be included in the strategic review. Will the Minister give a firm commitment on that? I do not wish to be told two years hence: “Children are not in the Bill so how can one strategically review children if they are not in the Bill?” I wish to be told clearly that this issue will not be left behind. It is a joyous day for adults, but there are children whom I have met and to whom we have said: “Go sit in the corner; we are not ready to deal with this yet.” In fact, we have slammed the door.

 

Statements on Tackling Obesity in Ireland, 17 June 2015

The Minister is always very welcome to the House. The time he has dedicated to today’s debate shows that he has an understanding of the importance of this issue and the serious health concerns associated with it. There is no doubt that we are IN the midst of a full-blown obesity epidemic. It is shocking that 61% of adults and 22% of children between the ages of five and 12 are overweight or obese. Given that this issue is so costly and damaging to the health and well-being of the nation, it is difficult to understand why we are still discussing strategies rather than implementing the excellent strategies we already have. The national task force on obesity has been operating for almost ten years, but its recommendations have been implemented in a partial and haphazard manner. The then Minister for Health, Deputy Reilly, established a special action group on obesity in 2011. This group highlighted priority areas and policy recommendations, such as an introduction of a sugar tax and the improvement of nutritional labelling. These are very cost-effective ideas, but four years on there has been no action towards implementing any of them. Children remain particularly vulnerable. The Government’s failure to act is having a particular impact on them. They are increasingly vulnerable to chronic diseases, premature deaths and disability in adulthood.

Given the negative impact of obesity on people’s health, it is understandable that we talk about it in a critical and negative way. However, we need to be mindful in our discourse that obesity and excessive weight are realities that people live with and struggle to overcome. This is especially important when we talk about childhood and adolescent obesity, which can have a significant impact on the self-image, self-esteem and confidence of the young person affected. For many years we have associated malnutrition with lack of food or starvation, but in fact that is under-nutrition. Obesity is the result of malnutrition, which is a poor diet with a lack of adequate nutrition for proper growth and development.Not everyone who is malnourished is overweight or obese but this does not mean that he or she is not seriously damaging his or her future health. It is imperative, therefore, that we shift the focus to a more holistic healthy lifestyle approach, with nutrition and exercise as its linchpins. We must tackle the unhealthy obsession that has developed about being fat, counting calories, “yo-yo” dieting and losing weight, all of which are serious issues among young adults, especially females.

As previous speakers pointed out, school is where children spend the majority of their time in the company of their peers. Physical education in schools is essential to a child’s physical and mental development. The children’s sport participation and physical activity study of Irish students in primary and post-primary education found that a mere 35% of primary pupils and 10% of post-primary pupils received the minimum 120 minutes of physical activity in school per week, as recommended by the national task force on obesity. One in four of the children surveyed was unfit, overweight, obese or had elevated blood pressure.

A 2013 report by the European Commission, Physical Education and Sports at School in Europe, found that the provision of physical education at primary level in Ireland is the third worst in the European Union, while at post-primary level, it was found to be seventh worst in the EU. This failure to ensure the weekly minimum of 120 minutes of physical activity for children is a serious blow to children’s health. We must promote physical activity, participation in physical education and non-structured play during school hours. Children should be encouraged to engage in team sports, join activity clubs in the community and simply enjoy the outdoors. When they learn these habits at primary school level they continue to be active throughout their teenage years, thus reducing the risk of obesity.

I am concerned that parents do not have control over children’s eating habits when they are outside the home. While healthy lunch policies are widely implemented in primary schools, they tend to be abandoned when children enter secondary school. Research carried out this year by the Irish Heart Foundation on food provision in post-primary schools found that 51% of students have daily exposure to foods that are high in sugar, fat and salt and that these are widely available not only outside the school gates but also in school tuck shops and vending machines. There is no statutory requirement on schools to provide meals and hot food to students throughout the school day, although many schools have canteen facilities. Given the obesity epidemic we face, it is alarming that no national guidelines or standards are in place on the types of food and drinks available for children to buy. With no time for exercise and sugary, fatty foods surrounding children everywhere, it is little wonder that childhood obesity rates are high. If we continue to ignore this issue, our children’s health will only worsen.

Obesity is also becoming a problem of poverty. Convenient cheap foods that are high in calorific value and low in nutritional value are becoming the norm for lower income families. Why are convenient healthy foods the most expensive option? Anyone who visits a canteen or shop will see that convenient healthy foods are the most expensive option. The cost of healthy food is becoming a barrier to a healthy diet for families. For this reason, I support the introduction of a sugar tax. The money generated from such a tax should be used to fund projects such as family food initiatives. These are projects that help to improve the availability, affordability and accessibility of healthy food for low income groups at local level using a community development approach. The objective is to help families to achieve a healthier lifestyle.

The Minister raised the issue of free general practitioner care for children aged under six years and the two health checks available for this age cohort. While these are excellent initiatives, one of the issues people have raised with me is that they do not provide access to a dietitian or nutritionist in cases where a general practitioner encounters a problem. The schemes present an opportunity for general practitioners to engage with parents and provide them with nutritional information. As the Minister is aware, I fully support free GP care for children aged under six years.

An issue arises regarding choice architecture. The Department organised a seminar some weeks ago on what is known as the nudge policy and a number of simple steps that could be taken in this area. One need only visit a local shop, supermarket or canteen to observe how choice architecture is being used. It is easy for shoppers to grab the unhealthy option. While many of us agreed with Senator Byrne’s interesting comments on food, these issues do not always click for us. If Members are not getting this information easily, how much more difficult must it be for someone managing a family and in a rush to do so?

I thank the Minister for his attendance. My message is that we have policy blueprints and it is now time for action.

Statements on Alcohol Consumption in Ireland

I was happy to swap with my colleague Senator Rónán Mullen because I would not have wished him to feel he was being silenced by not being able to contribute to the debate on the forthcoming referendum. I welcome Ms Suzanne Costello from Alcohol Action Ireland, who is in the Visitor’s Gallery.

I welcome the Minister for Health, Deputy Varadkar, to the Seanad and applaud him for what he is doing in this area. I accepted an invitation from the Department of Health to attend a seminar entitled “Influencing Healthy Lifestyles: Nudging or Shoving? The Ethical Debate.” It was really informative, and I thank the Minister for extending the invitation to us.

The public health (alcohol) Bill 2015, as the Minister outlined, deals with labelling, minimum unit pricing, marketing, advertising sponsorship, availability and price-based promotions. The Joint Committee on Health and Children, chaired by our excellent Chairman, Deputy Jerry Buttimer, held a series of meeting on the subject and is finalising its report. The Minister came to the final hearing of this series of debates on the heads of the Bill to hear the views of the members. What the Minister said today in the Seanad shows me that he took on board a number of the committee’s sentiments with regard to the public health (alcohol) Bill. I thank him.

I note with sadness that according to the OECD report Tackling Harmful Alcohol Use: Economics and Public Health Policy, Ireland has the fourth highest level of alcohol consumption in the OECD, behind Estonia, Austria and France, at 11.7 litres per capitafor those aged 15 years and over. To be placed fourth in this category is not the position we want to hold on this league table.Several of my colleagues have referred to the executive summary of this OECD report, from which I will quote:

 

Alcohol has an impact on over 200 diseases and types of injuries. In most cases the impact is detrimental; in some cases it is beneficial. In a minority of drinkers, mostly older men who drink lightly, health benefits are larger. … Harmful drinking is normally the result of an individual choice, but it has social consequences. The harms caused to people other than drinkers themselves, including the victims of traffic accidents and violence, but also children born with foetal alcohol spectrum disorders, are the most visible face of those social consequences. Health care and crime costs, and lost productivity, are further important dimensions. These provide a strong rationale for governments to take action against harmful alcohol use.

 

People often talk about the consumption of alcohol by young people and children, but they do not necessarily refer to the impact of alcohol on children in families. We see the figures in reports on domestic violence. The example set by the parents’ lifestyle impacts on the household. Senator Colm Burke referred to the students who won the Young Scientist exhibition with their project entitled: “Does the apple fall far from the tree?”, who made a presentation to the Joint Committee on Health and Children. In their project they quoted from a recent ISPCC report in which one child noted: “If you see your parents get drunk, whether you like it or not, it will have an effect on your life.” What surprised me was that one fifth of parents surveyed were not concerned about the prospect of another parent or adult supplying their adolescent with alcohol. That shows me how normal it is for adolescents to drink alcohol. If the adults in these young people’s lives think it is acceptable to buy a young person alcohol, it shows how much needs to be done in informing and educating the adults as well. We have to focus on young people. There is an issue with young people and alcohol which is European-wide, but, as the saying goes, they do not lick it off the ground. The adults in their lives are the role models and they very often set the norms. It is the norm for adults to go to the pub to socialise. We do not have other avenues. We need to ensure we have other avenues and that we provide other examples for our young people.

I fully endorse minimum unit pricing. The excellent report by Dr. John Holmes and Dr. Colin Angus from the University of Sheffield is comprehensive and goes through everything. They have been very open. I have gone back and forth to them with questions and they have been open about addressing any concerns we have. I would be very happy to share this report with colleagues.

I am concerned that the code of practice must be placed on a very strong footing. I have observed how the drinks industry can find every loophole in the system. Could we look at the threshold for the audience profile measurement, which stands at 25% at present? That is far too high. It should be at 10%. I would prefer if there was no alcohol advertising, but at the very least we need to reduce the level of advertising. I raised the issue of online marketing at the committee hearings. We know that some years ago Diageo announced that 21% of its marketing budget would go to online marketing. Recently legislation was introduced in Finland to ban alcohol apps that contained games, location settings and information on the nearest place to drink. Clearly, these apps are targeted at children. It is a social engagement. As my colleagues have said, a young person who visits YouTube will see advertisements for alcohol that I do not see. The drinks industry is very skilled at targeting particular groups. They know what sites and YouTube videos people are looking at, and the advertising is targeted at them. I have seen the effects of this at first hand. If I walk into any classroom and ask children to name their favourite advertisement on television, I guarantee that alcohol advertisements are up there in their choice. The young people score highly on brand recognition.

This brings me to the issue of sports sponsorship. I really believe we should set a date, no matter how far forward it is, to cease all alcohol-related advertising. It is very telling that neither the drinks industry nor the sports organisations will tell us how much sports sponsorship is worth. We do not have a figure. I think that is unacceptable that we do not know what we are talking about. Youth organisations which do so much voluntary work across the country will not take a single cent from the drinks industry, and I do not see the Government being put under pressure to replace it. In fact, the funding of youth organisations was cut by 40% during the recession, yet these organisations are still delivering those services. I acknowledge that some sporting organisations have stopped taking money from the drinks industry, but the sporting organisations who are still taking sponsorship money should let us know how much we are talking about. Last year, a school principal from Munster spoke at an Alcohol Action Ireland hearing on the issue of sports sponsorship. When Munster won what in France is called the H Cup, he invited the team to visit the school and he was delighted a few team members said they would go. They had a great day, but when they arrived with all the sponsorship and drinks advertising, he realised that he, as the principal of the school, had brought alcohol advertising to the school and he apologised to his students for doing so.

How the drinks industry has a handle on us is subliminal and insidious. It is unacceptable and we need to examine it. At a recent hearing, Katherine Brown of the Institute of Alcohol Studies stated alcohol sponsorship of sport is a way past children’s bedroom doors because they have a picture of a sporting hero on the bedroom door with the nice alcohol branding linking it to sporting success. She stated that if we are really serious, we need to tackle and deal with the issue of separation.

We also need to address the drinks industry role in decisions taken. I am concerned when I see jobs advertised by certain drinks companies. According to the job descriptions, they want to stay one step ahead of regulatory developments. They want to ensure they can beat the system. They will tell us it is all about education and if we were all more informed, we would all make the choices. I know about education, healthy eating and lifestyle. I am not as good as I should be because it is not what changes my behaviour. This is where legislation is important and why the Minister has my absolute and full support. I want us to go further and to do more. I want us to follow policies like that recently announced by the HSE, whereby it will have no truck with the alcohol industry. Why are the Departments of Education and Skills and Health not coming out with similar statements? The Child and Family Agency is thinking about it. It should have no truck with the drinks industry. We must do a lot more in Ireland.