Disability – Governance Consulting

15 March 201616 December 2018

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

6 October 201516 December 2018

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.

28 July 201316 December 2018

Email Newsletter – July 2013 – End of Term Roundup

It’s been another incredibly busy term. There have been highs and lows, meetings of minds and divergences of opinion over contentious issues. Not least the Protection of Life During Pregnancy Bill 2013 and the 32nd Amendment of the Constitution (Seanad Abolition) Bill 2013. In this, my last newsletter before we resume in September, I would like to set out my thinking on these two Bills and give you some of my term highlights. The following hyperlinks will let you peruse the newsletter at your leisure:

Protection of Life During Pregnancy Bill

Seanad Abolition

International Women’s Day

Transparency and Accountability

Party Leaders Allowance

My work does not stop when the Houses rise. I will be spending the summer researching, preparing and strategising for the important work ahead, including the Child and Family Agency Bill 2013, revised Heads of Children First Bill, and the Assisted Decision-Making (Capacity) Bill 2013.

I would like to thank my contributors and team, particularly my assistant Amy McArdle whose professionalism, human rights and legal expertise, helps me maximise my input and engagement.

I look forward to working with you into the future and if there are others who you feel would be interested in my work please forward them this newsletter or invite them to subscribe to it on my website www.jillianvanturnhout.ie

Best wishes,

Jillian.
Protection of Life During Pregnancy Bill:

As a member of the Joint Oireachtas Committee on Health and Children, I was privy to the 6 days of Committee hearings, 3 days in January and 3 in May, on the Government’s options following the Expert Group Report and the Heads of the Protection of Life Bill respectively.

The hearings provided a forum to discuss the legal, medical and ethical issues relevant to the Bill and heard from experts, often espousing very contrary views, from each of these disciplines. It was an extremely useful exercise for me and following serious thought, careful consideration and same examination of conscience I employ before making any decision as a legislator, I found I was able to support the Bill and its passage through the House.

My decision to support the Bill was notwithstanding a number of genuinely held concerns. I was not in favour of the Bill making a distinction between a risk of loss of life emanating from a physical or mental health condition. Aside from being unnecessarily legally, I believe in the wider public debate on mental health and efforts to destigmatise mental health illness is a regrettable and retrograde step. I argued that the threatened 14 year prison term and unlimited fine was barbaric and a wholly inappropriate means of appeasing opponents of the Bill who, let’s face it, would be opposed to the Bill however drafted because they are fundamentally opposed to the principal. Finally, I expressed my concern over the absence of distinct legislation to clarify issues of capacity and consent where the patient is under the age of 16 years. The Minister for Health has given me a commitment to bring forward legislation to address the capacity and consent for children. Click here to read my speech.

Seanad Abolition:

I take my role as a legislator very seriously. I am also a citizen, who is directly impacted by the legislation we pass and votes in referenda to change the Constitution, as will be the case when the question of Seanad abolition comes before the Irish people in the autumn.

As such, in coming to the Government’s 32nd Amendment of the Constitution (Seanad Abolition) Bill, I endeavoured to balance my Senator’s hat and private citizen’s hat appropriately and honestly and the truth is I haven’t arrived at a definitive position yet.

As an active Member of Seanad Éireann I see its flaws, I live the frustration and I understand the criticisms. On the other hand, I have seen and experienced the capacity of the Seanad to scrutinise Bills, to secure greater human rights proofing of legislation and policy, and to add a layer of expertise and consideration that is often lacking in Dáil debates. At the very least, the Seanad is in need of radical reform. So too is the Dáil if we are to resuscitate political democracy in Ireland. As it stands, I am not yet convinced about the Dáil’s ability to deliver the self-reform needed to plug the checks and balance gap that would be left by the Seanad’s abolition.

I went into some considerable detail on these points in my Second Stage intervention to the Seanad and made it clear that I would not impede the passage of the Bill through the House.

Arriving at my position on this incredibly important question is a journey that I am still in the process of taking. However, what I do believe, as reflected in my intervention and in my vote against a Motion tabled by my Seanad Colleagues to recommit the Bill back to Committee Stage and consequently delay the Referendum, is that this is a question for the people and the people alone to answer.

You can read my Seanad contribution in full here.

International Women’s Day:

To celebrate this year’s International Women’s Day, 8 March, I was delighted to host a lunch for participants of the Women for Election Programme. This innovative, non-partisan programme is designed to inspire, equip and inform women to run for political office. My guest of honour was Kirsten Gillibrand, United States Senator for New York. She gave us a unique insight into being a woman in US politics, the balancing of work/family/life commitments, childcare, and other issues identified as barriers to women entering into the political arena.

Transparency and Accountability:

I find Senator Gillibrand’s approach to politics very interesting. She is the first member of Congress ever to post their official daily meetings online every day, so her constituents can see who is lobbying their Senator and for what. I also feel strongly about lobbying and recently tabled a Private Members Motion calling on the Government, in addition to the planned Regulation of Lobbying Bill 2013, to introduce transparent and accountable regulations governing Parliamentarians in their engagement with lobbyists. Like Senator Gillibrand, I am committed to transparency and accountability. I believe that every Senator should publish an annual statement of the public money they receive and I invite you to view my statements for 2011 and 2012, which has been endorsed by Transparency International Ireland and can be viewed here.

Party Leaders Allowance:

Back in March 2012, during the debate on the Electoral (Amendment) (Political Funding) Bill 2011 myself and my fellow Group Senators tabled a series of wide-ranging amendments including one to ensure that allowances paid to Party Leaders and Independent Members of the Oireachtas are vouched. All of our amendments were rejected. I was therefore surprised and very pleased by the Government’s decision to introduce vouching to the party leaders’ allowance system.

Childcare:

In addition to initiating a Seanad debate following the broadcasting of Prime Time’s “A Breach of Trust” in May, which documented instances of maltreatment and emotional abuse at the three Irish Childcare facilities, I also hosted a special briefing session by Early Childhood Ireland on examples of good practice and quality in the provision of early childhood care and education, which was very well attended by Oireachtas Members.

Genealogical:

One of my hobbies is genealogy, and I am currently tracing my own family tree. The European Commission is set to consolidate data protection within the European Union and I am concerned that no mention was made of genealogical records. I was aware that the issue of data protection was on the agenda of an informal meeting of Ministers for Justice and Home Affairs in Lithuania and I tabled an Adjournment Motion to request that Minister Shatter raise the importance of ensuring the continuing availability of genealogical records at that meeting.

Disability:

I was delighted to host a briefing session for Oireachtas Members by the Disability Rights Coalition Ireland on the issues affecting young adults with an intellectual disability and/or autism leaving second level education, who need further support from disability services. I fully agree with the Coalition’s aim to promote empowerment of people with a disability rather than conforming to typical charity model. During an excellent debate on the tremendous work of Special Olympics Ireland, I also took the opportunity to put the spotlight on emerging social entrepreneurs who have started HeadstARTS, which endeavours to empower and enable people with intellectual disabilities through the arts.

LGBT Rights:

Along with Senator Fiach Mac Conghail, I was honoured to cosponsor the Legal Recognition of Gender Bill initiated by our fellow Group Senator Katherine Zappone, which seeks to introduce a Gender Recognition Register which would collate self-declarations of gender from transgender individuals. I will continue in the new term to ensure the human rights proofing of legislation and policy and to advocate on a multitude of issues from direct provision accommodation to stroke and heart heath awareness. I will also continue to maximise the Committee structure as a member of the Joint Oireachtas Committee on Health and Children by addressing real and pressing concerns in health and child related issues and through the quarterly meetings with Ministers Frances Fitzgerald TD and James Reilly TD, and Minsters of State Kathleen Lynch TD and Alex White TD.