Sunday, August 20, 2017

Kieran Murphy details a recent Irish High Court case with implications across the areas of disability, mental health and civil rights.

  • This case study examines a recent Irish High Court case regarding an application by an adult to be discharged from his detention in an institution in the U.K.
  • This detention had been ordered by the Irish courts when the applicant was still a child.
  • The case raises a number of interesting issues regarding the implementation of the Mental Health Act 2001, the Disability Act 2005 and the High Court’s powers to order the detention of people to vindicate their constitutional rights.

The jurisdiction of the High Court to detain people if they were a danger to themselves or others was extended to vulnerable adults in 2011 with the case of Health Service Executive (HSE) v. O’B[1]. In that case the vulnerable person in question had a long standing history of what was termed “very challenging behaviour” and “extreme violence”.  At the time of the case he was over 18 and thus an adult. The HSE argued that it was in his best interests that he received clinical, medical and nursing treatment in an environment of therapeutic security, namely the Central Mental Hospital in Dundrum. The judge said that “where an adult lacks capacity and where there is a legislative lacuna so that the adult’s best interests cannot be served without intervention by the Court, I am satisfied that the Court has jurisdiction to intervene.” Accordingly an order was made by the judge to detain Mr O’B, subject to regular review by the court.

In the HSE v O’B the person detained had been found to lack capacity. An interesting potential extension of that case was heard in the High Court on 6th October 2016[2].  Ms Justice Bronagh O’Hanlon gave a judgment on a case concerning J.B., who had lived in St. Andrew’s Hospital in Northampton by order of the Irish High Court since 2011. He had been placed in the hospital, while still a child, as there was no facility in Ireland suitable for his needs. When he reached the age of 18, J.B. challenged this continued detention or any other similar plans for his care as being a deprivation of liberty now that he was an adult.

The judge considered whether the Mental Health Act 2001 did apply in this case. JB had been diagnosed with a personality disorder. It was found that personality disorder did not come within the scope of a “mental disorder” under the Mental Health Act 2001 and so he was not detainable under that Act. On this point the judge concluded that as “JB is an adult with capacity and is not presently detainable under the Irish Mental Health Act 2001, any further detention (in St Andrew’s Hospital) is illegal”.

During the case the judge referenced another statutory scheme, the Disability Act 2005, saying that “the HSE is under a statutory obligation to provide services to a person with a disability such as J.B. under the Disability Act 2005, should he be formally assessed as a disabled person”[3]. The judge said if JB was found to be a person requiring accommodation needs under the Disability Act, then there would be an obligation on  the HSE and/or TUSLA to provide secure and settled accommodation for him pending his being given long-term accommodation by the local county council. The Judge appeared to reject JB’s own direct evidence that he could look after his own living arrangements and noted that there was an available bed in the Central Mental Hospital where JB could temporarily remain as a voluntary patient pending provision of the promised place with a disability service provider. Ms Justice O’Hanlon continued that “it is in his best interests that he would be monitored weekly in that area to ensure that he is compliant with his medication”[4]

This case raises a number of interesting questions. Firstly, it was not clear from the judgment if the obligation on the HSE to provide a service to J.B. was based on the Disability Act 2005 as there was no evidence provided in the court report as to whether an assessment of need had been completed for him as required under the Disability Act 2005.

The second interesting point is whether this case extends the inherent jurisdiction of the High Court to detain persons “with capacity” to vindicate their constitutional rights. Counsel for J.B. had argued that that the law was clear that a person with capacity cannot be detained under the inherent jurisdiction and that there was no legal basis to detain J.B. It is here that the ambiguity of the decision in this case becomes apparent. In relation to J.B.’s detention in St Andrew’s Hospital it was found that he was not detainable as he had capacity; but he was to be detained in the Central Mental Hospital. The judgment itself does not reach a conclusion on whether this “new” detention in the Central Mental Hospital is based on the inherent jurisdiction of the High Court to detain J.B. in order to vindicate his constitutional rights. This new detention appears to be on the basis that J.B. voluntarily chose to go to the Central Mental Hospital.

The case raises another issue regarding deprivation of liberty. Ms Justice O’Hanlon said that “it is in his best interests that he would be monitored weekly in that area to ensure that he is compliant with his medication”.[5] This direction that he be “monitored weekly” would appear to be a deprivation of his liberty, regardless of whether he was a “voluntary” patient in the Central Mental Hospital or not.

Finally this case brings into focus the High Court extending its remit in the absence of a statutory or legislative framework. In an analogous case regarding the use of court power’s in the absence of legislation concerning children, S.S. (A Minor) v. Health Service Executive [2008] [6], it was said that the frequent invocation and exercise of exceptional constitutional powers, absent principles of application or, any statutory or regulatory framework is undesirable.

[1] Health Service Executive v O’B. (a person of unsound mind not so found) (2011) IEHC 73

[2] Health Service Executive v JB (No.2) (2016) IEHC 575

[3] Health Service Executive v JB (No.2) (2016) IEHC 575 at paragraph 115.

[4] Health Service Executive v JB (No.2) (2016) IEHC 575 at paragraph 117.

[5] Health Service Executive v JB (No.2) (2016) IEHC 575 at paragraph 117

[6] S.S. (A Minor) v. Health Service Executive [2008] 1 I.R. 594 at paragraph 76

Author Bio

Kieran Murphy B.C.L.; LL.B; R.N.I.D.  is a lecturer on the Diploma in Disability Studies in University College Cork.

  • In a modern world, laws need to change and be made new to help people
  • People need freedom to decide what they want to do and have a good life
  • Rules should not just create barriers to prevent people marrying
  • It’s about support, information, rights, respect and happiness for people.

In an Ireland that twelve months ago voted for marriage equality, there is still a category of persons for whom having a relationship is not legally clear.

For people with intellectual disabilities, beside the usual challenges of meeting a significant other, there is an onerous legal shadow hanging over them in the shape of an archaic system and a more recent law that is nonetheless just as restrictive and prohibitive.

122 people with intellectual disability became Wards of Court in 2015 and if you are a Ward of Court, by virtue of the Marriage of Lunatics Act 1811, you may not get married. The intent of this Act is to ‘prevent the marriage of lunatics or any person under a phrenzy’.

For the majority of people who are made a Ward of Court, it is typically for financial reasons such as inheritance or an award of damages. The consequences of wardship, including this change in status, ensures that they cannot marry. This is often a source of anger, frustration and regret for individuals.

The good news is that this law is changing and being removed from our statute books when the long-anticipated Assisted Decision-Making Act 2015 commences, hopefully by the end of this year. Upon commencement, all individuals will be free to marry in accordance with law and provided they have capacity to do so. Marriage equality will be finally secured for all.

To marry you must have capacity and in general terms, capacity to marry is considered at a relatively low standard. As was decided in the famous Durham case “the contract of marriage is a very simple one, which does not require a high degree of intelligence to comprehend”, and the court described marriage as an engagement to ‘live together and love one another…. to the exclusion of all others”. This doesn’t represent a particularly high legal standard, but does represent a major life goal for many people.

If you are not married, have an intellectual disability and wish to have a sexual relationship then the law is not clear. In 1993, a law was introduced that was hailed as advancing the rights of LGBT persons by effectively decriminalising homosexuality, but was instead creating a new category of person to criminalise. The ‘mentally impaired’ person was created and that same act made sexual intercourse with that person a criminal act. There is no mention of capacity or consent; instead an abstract and arbitrary definition of ‘mental impairment’ is included that provides little clarity over who can and cannot enjoy a sexual relationship. There is one caveat to the law however, in that it does not apply to marriage, so a sexual relationship that could be considered criminal outside of marriage, is not criminal inside marriage.

As far back as 2005, The Law Reform Commission said that “a regrettable effect of (the law) is that, outside a marriage context, a sexual relationship between two ‘mentally impaired’ persons may constitute a criminal offence because there is no provision for consent”.

This tandem system is confusing and it is unfair. It does little to protect – as can be attested to by the paucity of case law. Where sexual assaults have occurred, they tend to be tried under mainstream sexual offences legislation, and that can prove challenging for survivors of abuse in giving evidence, something the 1993 Act was designed to avoid.

Two cases that were widely reported on in the media showed the inadequacy of the law from a protection perspective. In DPP V XY, a man was charged and acquitted of the oral rape of a woman with an intellectual disability. Because there was no evidence of intercourse, the accused was not charged under the 1993 Act and the Act he was charged under gave no regard to any mental impairment of a complainant. In his judgment Mr. Justice Barry White stated “It seems to me that the Oireachtas when they introduced the 1993 act did not fully appreciate the range of offences needed to give protection to the vulnerable”.

A second case, again widely reported on in the media involved a young woman with Down Syndrome from County Kerry. Again as the sexual act fell short of penetration there was no charge under the 1993 Act. The judge in the case made the decision that the woman was an unreliable witness and as a result the charges were dismissed.

Clearly the law fails in its intended protective elements, but concomitantly, self-advocates with intellectual disabilities report the restriction of their rights as adults to have intimate relationships including sexual intercourse. Through our advocacy work, Inclusion Ireland has experienced the negative impact of the legislation, with educators and advocates afraid to provide support or education to individuals with disabilities, for fear of encouragement of law-breaking.

Again, thankfully this 1993 Act is under review as part of Ireland’s ‘Roadmap to Ratification’  of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), and it is anticipated that new legislation which more effectively protects, while also avoiding undue interference, will emerge before the end of the year.

Clearly the Criminal Law does not satisfy requirements of the UNCRPD and provides a barrier to people with disabilities enjoying relationships on an equal basis with others. Although the prosecutions under the 1993 Act are rare, the legislation has created a culture of fear and inactivity.

In terms of relationships, family planning and marriage, access to information and education can be a big challenge for many people with disabilities. People can be afraid to ask for support or information, doctors or other medical practitioners reluctant to provide services and other people who are in natural or paid positions of support may be afraid to offer information by virtue of the shadow of the criminal law. In June 2014, then Senator Katherine Zappone said that the law had created, a “chilling effect” where persons with intellectual disabilities within Irish society are fearful of forming relationships (The Irish Times, 10 June 2014).

Nonetheless, people with intellectual disabilities or extra support needs have identified relationships, sex, marriage and family life as important life goals for them. In a submission to the Law Reform Commission, the Connect People Network said “The law about sex and people with extra support needs is very important. The law affects some of the most important things in our lives”.

The UNCRPD requires States to take positive measures so as to ensure that people with disabilities have respect for privacy in family or home life (Article 22), and to take measures to eliminate discrimination in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others (Article 23).

In its report on Sexual Offences & Capacity to Consent, the Law Reform Commission commented that this “may be considered to have particular application to women, and …that all persons, including pregnant women, irrespective of their disability status, are entitled to have access to age-appropriate information and reproductive and family planning education”.

Additionally, the Commission took the view that “the provision of appropriate educational support… should be a pre-requisite to (testing) capacity to consent to sexual activity” and additionally that “education programmes should deal with privacy, intimacy, assertiveness, empowerment, relationships and the ability to identify abusive or exploitative situations”.

Through its advocacy work, Inclusion Ireland has encountered many people providing sexual education and training to people with intellectual disabilities who regularly cite fears about the law as a barrier to delivering good education. Educators are afraid that they are encouraging people to break the law.

Relationships in general can be hard for people with intellectual disabilities. Barriers exist in terms of socialising, loneliness as well as marriage and having a family. The recent report of the Intellectual Disability Supplement of the Irish Longditudinal Study on Ageing (IDS-TILDA) reported in 2014 that people with intellectual disability are generally single and without children or grandchildren. The same report noted that socialising can be difficult for people with disabilities, particularly those in institutions. Socialising tended to occur with staff or other residents. Almost half of adults involved in the IDS-TILDA reported feeling loneliness.

Further barriers exist with people with disabilities and their interactions with the public. Public attitudes towards people with disabilities having sexual relationships or founding a family are mixed. An Inclusion Ireland survey in 2008 found 98% of people believed that people with intellectual disabilities should have the opportunity to live as normal a life as possible. This is an exceptionally high number and represents a positive sign, but when more specific questions were asked the numbers began to drop. When asked about the right to marry, the number decreased to 80% and while this is still high, it means that one in five people do not believe that a person with intellectual disability should have a right that other adults have.

In the 2011 NDA Attitudes survey, approximately eight out of ten respondents agreed that people with vision, hearing or speech disabilities or physical disability have the same right to sexual relationships as the general population. However the number was significantly lower with people with learning disabilities or autism, with just 51% in agreement that they have the same right to sexual relationships as everyone else. Furthermore, support for people with intellectual disability or autism to have children if they wish was recorded at 38%.

It seems counter-intuitive that people would hold an attitude that people are entitled to a ‘normal life’ but that this would not include marrying or having a family or that people would have the right to marry but not to have children, yet successive surveys demonstrate that this is a prevailing view.

Clearly there is significant work to be done, not only in amending the criminal law and protecting people’s rights to relationships, but also in improving the visibility and acceptance of people with disabilities as having choice over their sexual agency, as partners, as spouses and as parents.

Author Bio

Sarah Lennon is Training & Development Officer at Inclusion Ireland .

  • Disability is a concern when deciding whether a person can be a good parent
  • A parent’s disability should not be the only thing that stops them being a parent
  • Being exploited may stop them being a parent too
  • Social workers need to be consistent when deciding whether a parent can be a parent
  • Courts need to help people get the support they need to be a parent.

In late 2015, the Child Law Project published its final report. This was a three- year project, where the team of lawyers and academics, led by journalist Carol Coulter, sat in on over 1,200 child care cases.

Whenever an order was being sought – in other words, where the State was moving to take a child into care, or to heavily supervise their care in the family home – the report found that 15.4% of the time, the reason for seeking the order was parental disability (intellectual, mental, physical). Shockingly, this was the most frequently cited reason for seeking an order. Neglect, at 15.3%, was the second most frequently cited reason.

The prevalence of disability as a reason for seeking an order is of huge concern. It raises questions about whether parents in this group are receiving adequate supports, whether social workers are educated about the kinds of specialist supports that are required, and whether these parents face a bias on the part of some social workers in relation to their parenting ability.

On a legal basis, it also raises the question of whether the rights of the parents are being breached. Disability as a single ground for initiating child care proceedings would be a clear breach of the Equal Status Act 2000. Plus, if a parent with ID is more likely to come before the courts in these kinds of cases, then it has to be asked whether those individuals are being discriminated against.

The reports found that at 10%, the single biggest factor leading to a case coming to court was the mental health of one or both parents. In almost 7.5% of the cases, the parent – usually the mother – had a cognitive disability. The authors felt that this was likely to be an under-representation as in some cases where alcohol or drug abuse, or severe neglect dominated the proceedings, undiagnosed cognitive disability was likely to have been a factor.

The authors also found that there was a haphazard approach to the diagnosis of these cognitive disabilities. They frequently saw cases where the issue arose in the middle of the hearing.

Parenting capacity assessments would sometimes be carried out before a cognitive assessment: the authors noted that when this happens, and if the person’s cognitive capacity is not taken into account, then they are bound to fail a conventional parenting capacity assessment. On another occasion, a report on the cognitive ability of a parent was referred to, yet it had been carried out years previously and prior to the person becoming a parent.

The matters that the authors saw before the court also raised issues in relation to the sexual exploitation of women with reduced cognitive ability:

“There are also cases where a person’s cognitive ability is so impaired that it is unlikely she can ever parent a child, no matter what level of support is offered. We have attended a number of cases where the court has heard the mother in the case had the mental capacity of an eight or nine year old, and evidence was also given of her likely victimisation through sexual exploitation. This raises wider issues relating to the protection of vulnerable adults as well as children.”

The report also found that 74% of the parents were parenting alone. As the authors pointed out, “Parenting alone is difficult for anyone, even those of full ability and with strong social networks. As we have seen, many of these parents suffered from disabilities or addictions, and our reports show that they also often suffered from social isolation, so were particularly vulnerable.”

A stark picture emerges of cognitive vulnerability, both in the parents and the children in these cases, and in particular single mothers (30% of the respondents). As the report notes, “the prevalence of disability and ethnic minorities among the respondents raises questions about the provision of services to these groups”. Later it notes, “again and again, questions were raised about the availability of such services”.

Case study

In a District Court hearing, a full Care Order for two sisters was granted. The sisters – both teenagers – had not been attending school. Their mother had limited cognitive ability and mental health problems. She was parenting alone.

The mother’s barrister raised the issue of her cognitive impairment and whether this was taken into account by the social workers. An education and welfare officer had called to the house of the mother to inform her about her legal responsibilities in relation to sending her children to school. In court, he was asked if he was aware that the mother had a borderline intellectual disability: he said he was not aware.

It turned out that the officer was aware that the mother was attending mental health services, but he did not take the initiative to get a cognitive assessment of the mother because “I was aware she was attending other services. That is their area of expertise”. When asked if he ever checked out the mother’s capacity to understand what was required, he said no.

A blatant lack of communication across the services, joined-up thinking, or case management comes across clearly in this.

When a cognitive assessment was carried out, on the instructions of the Child and Family Agency, the psychologist found that the mother was at the fourth percentile of cognitive ability, meaning 96 per cent of the population would have a higher ability. The psychologist commented:

“Her concrete style of thinking was very black and white. If the child said she was sick and could not go to school, it meant she could not go to school. She could not question how sick she was. I would have big concerns about her insight into safety issues with her children.”

The psychologist also found that if the mother was given a number of tasks, she would find it difficult to prioritise and to follow instructions. The mother’s barrister asked if the mother could manage if the tasks were presented in simplified language, one task at a time: the psychologist said yes.

On the other hand, in the same case, the supports that were provided didn’t have sufficient impact. The view of the psychologist was that the social workers did as much as they could in the circumstances. The following is a number of questions put by the mother’s barrister to the psychologist:

Barrister: “People on the fourth percentile can have and raise children?”

Psychologist: “Absolutely. It depends on what supports they have and also what is going on in the rest of their environment.”

Barrister: “If supports were put in place for the mother that may be of assistance for her?”

Psychologist: “It may be. But I understand that she did receive a number of supports.”

The court report went on to summarise the psychologist’s position:

The psychologist’s report said 24-hour parenting support would be necessary, that is, someone on call all the time. It would be difficult for the children to have all their needs met. There had been numerous social workers calling but change, while it occurred, was not sustained. Abstract thinking was very, very difficult for the mother.

Referring to the mother changing, she said: “My concern is, how long do her daughters have to wait? The question is whether the change is long-term, consistent, and how much change. I saw the social workers give instructions, model the instructions, repeat them. It suggests that when someone is there with her on a one-to-one basis she can make some changes. I don’t know how sustainable they are. Her capacity to change does not match the children’s changing development needs as teenagers.”

The teenage siblings went from living fulltime with their mother, to being together in foster care. Access included lunches and shopping trips with their mother, plus phone contact. The social workers wanted to reduce access to one hour per week with a support worker present, and they also wanted to reduce phone contact. It is not explicit in the report why this was required, though there was an implication that the girls, particularly the elder daughter, were shouldering their mother’s problems.

Giving her decision, the judge said: “The mother is not capable of doing what she needs to do in a time-frame that meets the needs of the children. The sad thing is that for a period of time the children were more than adequately cared for by their mother. But due to her cognitive ability she was not able to meet their needs as they got older.

“She is one of the best-intentioned persons we’ve seen here. We all want to put the best side out, but at the time they came into care the children were suffering from neglect. I will grant full Care Orders until B completes her Leaving Cert. I want a review every year, including of where the children live.

“In relation to access, what is happening in [the child and family centre] is very cruel. Access is not for the mother, it is for the children. The mother did work with [the local social services] but by the time of the assessment she had slid back. That is why [the centre] made the recommendations it did at this time.”

She made a direction under Section 47 that the children receive therapeutic support relating to their being in care, access visits and their relationship with their mother, in line with recommendations from the GAL. In four months’ time the court would deal with access, after-care and therapeutic supports.

“I want the mental health services to provide all the supports needed by the mother. She’s been absolutely marvellous. She attends all appointments, obeys all instructions. I look forward to positive news about what happens in the future,” the judge said.

Author Bio

Kate ButlerKate Butler BL is a practising barrister and a board member of Inclusion Ireland, a representative group for people with intellectual disabilities. She is available to give talks on this topic.

Kate Butler has carried out a detailed review of the new act, which considers all of the main people involved in its provisions, and the principal changes for people with intellectual disabilities and others.

  • The Assisted Decision-Making (Capacity) Act 2015 is now law
  • It replaces the Lunacy Regulations (Ireland) Act 1871
  • Before, people either had the ability to make decisions or they didn’t
  • With this new Act, people are allowed to make decisions in some areas of their life if they can but maybe not in other areas
  • All their decisions are not made for them, as before
  • The Act covers people with a disability, a head trauma or old age
  • The Ward of Court system is to be removed

Last December, the President of Ireland signed a new piece of legislation into law that has the potential to affect every adult in the State: the Assisted Decision-Making (Capacity) Act 2015. The Act governs the law in relation to adults who are experiencing difficulties with decision making, whether because of intellectual disabilities, acquired head injuries, or old age, and applies to any Relevant Person (RP) whose capacity is in question, or may shortly be in question, in respect of one or more matters (s.2(1)).

Commencement dates have yet to be published, but it is hoped that it will be commenced within 2016.

It is a progressive and reforming piece of legislation: it repeals the Lunacy Regulations (Ireland) Act 1871, which heretofore governed the law in this area. It changes the definition of capacity: while previously it was assessed on a ‘status’ basis – you either have it or you don’t – now, it can be assessed on a ‘functional’ basis. S.3 provides:

“A person’s capacity shall be assessed on the basis of his or her ability to understand the nature and consequences of a decision to be made by him or her in the context of the available choices at the time the decision is made.”

Rather than a fixed idea that a person can or cannot make any decisions, capacity is therefore to be understood as a fluid, changeable concept, depending on the circumstances of the person at the time and the nature of the decision to be made.

An assessment of capacity will also take into account that a person may be able to understand matters if they are presented to the person in a particular way (e.g. through pictures or plain language).

Crucially, the Act defines capacity in relation to decision-making and explicitly sets out that it does not apply to capacity or consent required in relation to marriage, civil partnership, judicial separation, divorce, the placing of a child for adoption, the making of an adoption order, guardianship, sexual relations, serving as a member of a jury, or making a will. At the moment, decisions to exercise fundamental rights do not have legal force when a person is a Ward of Court because he or she isn’t considered to have the capacity to make any important decisions. Indeed, the power or capacity to make these decisions, self-determination, is removed from these persons altogether.     

The Act does away with – as much as is possible – a paternalistic, ‘best-interests’ system of substitute decision-making.  Where a person is assisting an RP to make a decision, and even if the assistant believes that the RP is making an unwise decision, the assistant must assist the RP in making the decision of the RP’s choice (as long as no harm would come to the RP or another person).

The Act is 147 sections long and deals with a huge range of issues, including the Convention on International Protection of Adults, which is not dealt with here. This article hopes to provide an introduction to the main and immediate areas of concern for practitioners.

The main actors in Assisted Decision-Making:

  1. RP: A Relevant Person (RP) is someone whose capacity is in question, or may shortly be in question, in respect of one or more matters, and a person who lacks capacity (s.2(1)).
  2. Director: The office of Director of Decision Support Service replaces the Office of Wards of Court but with very much extended functions, including public awareness, supervising assistants and drawing up codes of practice.
  3. Circuit Court: Apart from specified issues where the High Court has jurisdiction, the Circuit Court has jurisdiction to deal with applications under the act. The court may make two declarations in relation to capacity:
    1. That a person lacks capacity to make a decision without assistance (i.e. once they have assistance, they effectively have capacity);
    2. That a person lacks capacity to make a decision even with
  4. DMA: An RP may appoint a person to be their decision-making assistant (DMA). The functions of the DMA are limited to advising the RP, ascertaining the will of the RP and once the decision is made, ensuring that the decisions are implemented.
  5. CDM: An RP may appoint a suitable person to be their co-decision maker so that they can make decisions jointly in relation to personal welfare or property, or both. This person must be a relative or friend who has a relationship of trust. The agreement must be registered with the Director and the CDM must file a report every 12 months, which must be approved by the RP. The Director must conduct a review every three years.
  6. DMR: The Circuit Court may appoint a decision-making representative (DMR), or make a decision-making order on behalf of the RP. A DMR has powers appointed by the court, which can be extensive, and so there are specific restrictions, e.g. a DMR cannot prohibit a person from having contact with the RP, and cannot restrain the RP unless there are exceptional circumstances. The Director must keep a register of DMRs and the DMR must file a report every 12 months.

Wards of Court:

The Ward of Court system is to be eliminated through a process of review: each Ward of Court aged 18 or over must be reviewed by the High Court or the Circuit Court (whichever court made the original order) within three years of commencement. If they are deemed not to be lacking in capacity, they will be discharged and their property returned to them.

If they are deemed to be lacking in capacity in relation to a particular decision/s, then they will be discharged and will come under the purview of the new regime: i.e. the former ward may appoint a CDM, or the court may appoint a DMR.

There are interim orders provided for so that the court can make orders where an application has been brought before the court, but not yet determined.  While the Lunacy Act 1871 is repealed, the jurisdiction in lunacy and minor matters is an inherent one, so it is likely that the wardship jurisdiction in relation to minors will survive enactment.

Enduring Powers of Attorney:

The Act will ultimately replace the Powers of Attorney Act 1996. The scope of authority of enduring power has been extended in that it may confer authority on an attorney to make decisions about the donor’s personal welfare. Previously, an attorney could make personal care decisions, which did not include the giving or refusing of medical treatment. Personal welfare is now defined to include accommodation, participation by the donor in employment, education or training, and in social activities; decisions on any social services; healthcare and other matters relating to the donor’s well-being. However, a donor is restricted from including the following matters in powers relating to personal welfare: the refusal of life-sustaining treatment, or anything which is the subject of an advance healthcare directive made by the donor.

Procedures in relation to the instrument include the requirement for statements by the donor, by a registered medical practitioner and a healthcare professional, and by the attorney. The procedures for revoking – which were not set out explicitly in the 1996 Act – are also particularised. Once the instrument has been registered, revocation may only occur following an application to the court.

The attorney must file a report to the Director every 12 months. Where the powers relate to property and affairs, the attorney must submit a schedule of assets and liabilities, as well as projected statement of the donor’s income and expenditure within 3 months of registration.

Advance Healthcare Directives

Anyone aged over 18 and who has capacity may make an advance healthcare directive (AHD). This will enable the directive-maker to be treated, if they lack capacity in the future, according to their will and preferences. AHD are applicable to general mental health treatments, but not where a person is suffering from a mental disorder and involuntarily detained under Part 4 of the Mental Health Act 2005.

While a refusal of treatment must be complied with (if the treatment and circumstances are clearly identified in the AHD), a request for a specific treatment is not legally binding. An RP, if he or she has capacity and is over 18 when making the AHD, is entitled to refuse treatment for any reason, including a reason based on religious beliefs.

An AHD is not applicable to life-sustaining treatment, unless this is substantiated by a statement by the directive-maker to the effect that the AHD is to apply, even if his or her life is at risk.

A directive-maker may designate a named individual to exercise relevant powers, i.e. to be their healthcare representative (HR). The HR has the power to ensure that the terms of the AHD are complied with and the directive-maker may confer powers that allow the HR to advise and interpret the directive-maker’s will and preferences, and to consent or refuse treatment, up to and including life-sustaining treatment, based on the known will and preferences of the directive-maker by reference to the AHD.

Where there is an ambiguity in how the AHD is to apply, the healthcare professional must consult with the HR, or friends and family. Where it is not resolved, it must be resolved in favour of the preservation of the directive-maker’s life.

Safeguards and Offences

Safeguards such as eligibility, disqualification, facility for complaints etc, are fairly uniform across the spectrum. There is oversight by the Director in relation to a CDM, a DMR, a HR and Powers of Attorney, but not in relation to the appointment of a Decision-making assistant by an RP, except via complaint.

There are criminal offences in relation to fraud provided for, but only in respect of a Co-decision-making agreement and Powers of Attorney.

A decision-making assistant, co-decision-maker, decision-making representative or attorney who ill-treats, or wilfully neglects the RP, will be guilty of an offence and liable for summary conviction or conviction on indictment.

Look it Up

Assisted Decision-Making (Capacity) Act 2015:

Butler, Kate, Moving Capacity out of the Victorian age: the new Assisted Decision-Making Bill, 18(5) 2013 Bar Review 102

Duggan, Diane, Capacity Law in Ireland: Assisted Decision-Making Bill 2013 2014 (1) IFLJ 28

Healy, Kevin, The Assisted Decision-Making (Capacity) Bill 2013: A step in the right direction but does it go far enough? 2015 COLR 101


This article was first published in the Law Society Gazette (March 2016) and is reproduced with permission.

Author Bio

Kate Butler BL is a practising barrister and a board member of Inclusion Ireland, a representative group for people with intellectual disabilities. She is available to give talks on this topic.

Sarah Lennon takes a close look at what the new legislation really means in practical terms for people with an intellectual disability, helping them to determine their own lives and activities...

  • The Assisted-Decision Making Act is now the law and will come into effect later in 2016
  • This will change the way services have to do things
  • Up until now, a service-user might go to a doctor or the chemist with different staff member. Also, there may have been blocks to them signing leases or having their own bank accounts etc
  • With this law, service-users can name who they want to support them in areas of their life
  • It is a law that tries to help the service-users own preference and will be the guide to decisions in their lives

The Assisted-Decision Making Act is now the law of the land, so we have a bit of a wait until the law comes into force later this year – enabling us all some time to get our heads around the implications of the new law and how it will practically change all of our lives.

What is clear, is that it is going to mean huge legal, cultural and attitudinal changes for us all. There will be some help along the way, the new Decision Support Service will issue codes of practice once it has been established – handy guides along the way. In the meantime, we all need to familiarise ourselves with how the law could change how we need to do things from now on.

To  illustrate this, let’s consider ‘Sarah’. Sarah is an imaginary woman, with an intellectual disability, living in an imaginary residential facility but facing many of the real decisions and experiencing the real types of roadblocks that individuals experience daily.

Sarah has a chest infection and needs to attend the GP. The staff roster will often dictate who goes with Sarah to the doctor and who takes her prescription to have it filled. Sarah feels that the doctor spoke to the support staff and not to her and was not asked for her opinion or consent during the process. Sarah will be given her new medication at the designated time. Sarah is also unhappy that a different staff member goes with her to the doctor each time and would like some consistency in her support.

Sarah receives a weekly disability allowance, and the Department recently switched the payment from post office to bank account. The bank that Sarah uses insisted on her opening a joint-account with her mother as they did not believe that she had capacity to manage the account on her own. Sarah’s mother was reluctant to do this but the bank insisted. Sarah’s mother is worried that Sarah could become a Ward of Court if anything happened to her or the account would be frozen. Sarah manages her day-to-day finances but doesn’t have experience using the ATM.

Sarah is also in the process of moving to the community from the residential facility. She is looking for a new home in the community but nobody seems to be clear about who can sign the lease. Sarah also needs to get gas, electricity, phone, waste disposal and other services that require a contract. Sarah’s sister has volunteered to co-sign the lease but the landlord isn’t too keen on that process.

What we can see is that a series of blockages have cropped up, and in the absence of a clear legal framework a series of informal processes have evolved. In making our new system work, these informal processes will need to be unbundled and a new way found, of looking at decision-making using the Assisted Decision-Making, Co-Decision-Making and Decision-Making Representation structures. Although we cannot ascribe each system a category of decision-making or say which system best suits someone with a mild intellectual disability or a moderate intellectual disability etc., we can start to look at how things may be done differently for these everyday situations.

If we take Sarah and look at the effect of the new law over her life, there are many different options available to her. First of all, Sarah must be presumed capable of making all her own decisions herself, and if she wants support it must be a person of her choosing.

Sarah may wish to choose an Assistant to support her around going to the doctor. This person must be someone she trusts and with whom she has a personal relationship. The person should also be available and willing to support Sarah. Sarah would choose her cousin Annie, as she lives nearby, and is of a similar age. They also get along well and share trust. Annie could attend the doctor with Sarah, help her to understand the things the doctor says and help her to communicate a decision.

Annie does not make the decision for Sarah. The relationship is registered with the Decision Support Service, as evidence that Annie is Sarah’s Assistant for medical decisions so the GP cannot refuse Annie entrance and nobody else can take Annie’s place unless Sarah chooses another Assistant. Although staff in the service have taken care of these decisions for Sarah up to now, they cannot do that anymore as even if she wants her Assistant to be a staff member, the law doesn’t allow owners, managers or staff from residential units to carry out this role.

Although Sarah has a joint bank account with her mother, it is only Sarah’s Disability Allowance that goes in.  Under the new system, Sarah could choose her mother as a Co-Decision-Maker for her financial decisions instead and register this with the Decision Support Service. This arrangement would involve Sarah and her mother making all decisions together. Sarah’s bank account would only be in Sarah’s name but Sarah and her mother could make decisions together. Were something to happen to Sarah’s mother, and she could no longer support Sarah, she could choose another person to be a Co-Decision-Maker. Like the Assistant, the Co-Decision-Maker must be a person with whom she has a personal relationship. Sarah’s mother can explore using the ATM with Sarah, as one of the guiding principles of the new law is that individuals should be encouraged to improve their decision-making capacity.

Finally, in respect of Sarah moving to the community, she could call on the full gamut of decision-making supports around the process if she wants them. Depending on the complexity of the decision, Sarah may require a different support for each decision. If she enjoys good decision-making capacity around paying bills or grocery shopping then an Assistant or Co-Decision-Maker may suffice. If there were significant concerns around Sarah making serious financial decisions such as entering a tenancy, then an application to become a Decision-Making Representative could be made. This application is made to the Circuit Court and the person bringing it must show that Assisted Decision-Making and Co-Decision-Making are not sufficient or suitable. In Sarah’s situation, her sister Alice could apply to the Court – in practical terms this means  that Alice would sign the lease on behalf of her sister. However, at all times, Alice must observe the will and preference of her sister. Alice, knowing that Sarah loves the cinema and shopping, chooses a property near the town centre, rather than the property closer to the service or the GP, because this is what Sarah would choose for herself.

The examples above are not exhaustive and every individual will need their own specific support. This examination will hopefully go some way towards illustrating in practical ways the manner in which the new law will change the customs and cultures that were created while we waited for the law to change. The new focus is on what support a person needs to make her own decisions, from her own natural support structures and how to express her own will and preferences, sometime through other people who know her well.

Author Bio

Sarah Lennon’s educational background is in law and equality studies. She has worked for many years in disability, equality and social and legislative change. Sarah has worked with Inclusion Ireland since 2006, and in the area of vocational training for people with disabilities prior to that time.  

Among her many areas of work, changes in capacity law have dominated Sarah’s employment to date, and as well as leading out on Inclusion Ireland’s campaigning work, she has developed training and information booklets such as the popular ‘Who Decides & How; Making Medical Decisions’.

John Dolan, Seanadóir and CEO of the Disability Federation of Ireland, was successful in his bid for the Seanad in 2016. Here, he outlines his reasons for entering the race...

  • John Dolan works in the Disability Federation of Ireland (DFI) and he is running for election to the Seanad in 2016
  • One person in eight has a disability so they deserve a voice in the Seanad
  • The economy is getting better so we need to make sure that the disability area gets better funding

I have been asked to outline why I am a candidate for the Seanad election.

Put simply the Dail is the assembly of publicly elected representatives who elect the Taoiseach, eventually, and to whom the Government report. The Seanad is elected by less than 1,200 people, namely the members of every County and City Council, the newly elected TDs and the outgoing 60 Seanad members. Its members are to come from a broad array of areas of Irish society and are required to bring practical knowledge and experience to the work of the Oireachtas, where they complement the membership and focus of the Dail. This has not been the practice to date, as the Seanad is seen and used by political parties to support their desire for enhanced Dail membership.

The sixty Seanad members are spread across five vocational panels along with the two university panels. I am running in the Administrative Panel, which is concerned with public administration and social services.

Disability Federation of Ireland (DFI) along with eleven other voluntary disability organisations are entitled to nominate candidates to contest the Seanad election on the Administrative panel. After working with these nominating bodies it was decided that two candidates would be chosen to run, myself and Lorraine Dempsey, Chairperson of the Special Needs Parents Association.

Voluntary disability organisations have always comprised the majority of the nominating bodies. Over the years, with this in mind and being well aware that disability is a major societal issue, it was easy to come to the conclusion that the Seanad is a legitimate and potentially powerful place for the disability inclusion voice to be heard. One person in eight, 600,000 people, have a disability and then there is the impact on their families and loved ones.

The outgoing Government has recently, and eventually, committed to ratification of the UN CRPD (United Nations Convention on the Rights of People with Disabilities); Ireland has stopped being in recession; The severe cuts to services and incomes for people with disabillities, and the growing numbers – these were all critical reasons for me in putting myself forward to seek election. Allied to this we were hearing that the recovery had arrived and now there are constant demands by public servants and others for the restoration of pay levels and for increased spending on a range of public services. Quite simply, the voice of the 600,000 needs to be heard also.

All was far from well for disabled people and their families before the recession. Ireland was only at the start of a journey to ensure full and equal inclusion. We did not hear about too many disabled folk losing jobs throughout the recession simply because they were not in jobs to begin with.

There is another element to my reason to seek to be in the next Seanad. DFI ran a strong public campaign,, in order to have disability inclusion as a core part of the focus of the new Government. Having someone from the broad disability movement in the Seanad would further support that objective. That campaign seeks a Cabinet Minister for Disability Inclusion to drive and co-ordinate a whole-of-government approach to ratification and implementation of the UN CRPD and an Oireachtas committee on disability Inclusion as well as the immediate reversal of the cuts that have taken place as a start on the road to inclusion.

Author Bio

10 - John Dolan - DFI and the Seanad Elections 2016

Senator John Dolan is CEO of the Disability Federation of Ireland, and was a successful candidate in the 2016 Seanad Éireann elections.
Twitter: @SenatorJDolan


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Sarah Lennon looks forward to the benefits for all of the Assisted Decision-Making (Capacity) Bill 2013, which passed all stages in the Seanad on Tuesday, 15th December following many hours of debate.

Recently I have been travelling the country for work, meeting many different groups of people including people with intellectual disabilities, families, carers, employees and people who provide all kinds of services. Various topics have been on the agenda, including money and finances, social inclusion, moving on from congregated settings, medical decisions, relationships or making a will.

Inevitably and unfailingly, the conversation comes round to the Assisted Decision-Making (Capacity) Bill 2013, and this demonstrates either the sheer relevance of the legislation or my predilection towards introducing it into conversation.

It’s fair to say that the reaction to the Bill has been mixed, with some considering it to be the panacea to all ills, while others are sceptical that it will represent anything in practice other than Ward-of-Court-lite, and some think that the legislation is not radical enough.

More often though, I have been met with confusion, anger or a complete lack of knowledge about the Bill and what it contains. On one memorable occasion I was branded a ‘lunatic’ for suggesting these changes were imminent. The irony of receiving this moniker when speaking about repealing the ‘Lunacy Act’ was not lost on me.

While it is clear that confusion remains and that the information is not necessarily ‘out-there’, it is simply not true to say that there has not been publicity and consultation on the legislation.

Extensive consultation has happened, individuals and organisations were invited to make written and oral submissions, and there was a public consultation in Dublin Castle in 2013 when the Bill was first launched by the then Minister Alan Shatter. Between the recent third and fourth stages of the Bill there were close to 300 amendments leading to significant changes to the legislation.

But the fact remains that in the ‘real-world’, there remains a confusion about why this law will matter and how it will affect people’s lives. The law is complex in parts, and often the debate around it is technical or framed in legalese. Although the Bill itself does not necessarily strike new ground on an international scale, it does represent a seismic shift in the area of capacity and decision-making. This law matters and it matters a lot.

And it doesn’t just matter for people with disabilities; the word ‘disability’ does not appear in the Bill when referring to capacity. The Bill is for everyone, applies to everyone and even if it doesn’t affect our lives today or the life of a person in our family, it will at some point.

For most of us, decision-making is something we take for granted until through injury, stroke, mental illness, dementia or Alzheimer’s disease we are suddenly faced with personal, financial or medical difficulties. From our position as apparently competent decision-makers, we are then faced with a very unpalatable set of choices of informal decision-making or Ward of Court.

For all parents, the prospect of their son or daughter becoming an adult and losing parental power is difficult, and for some families of people with intellectual disabilities, their son or daughter becoming an adult is simply too frightening to contemplate.

Many people articulate this fear to me by asking the best way to leave guardianship of their adult son or daughter in their will, and when I inform them that they cannot do this I am met with incredulity, dismay or frustration.

Questions like this are not a reflection of a parental desire to treat their son or daughter as a chattel, but from a fear of a future for which they are no longer around, and a fear of ‘what will happen after I am gone?’.

On the flipside, many self-advocates that I speak with are desperate for this legislation in order to assert their right to make their own decisions. To have their presumption of capacity to make decisions enshrined in law represents an affirmation of their status as adults, as citizens, as equals in law. People speak to me of support, but support on their terms, of their choosing and under their control.

When we consider these two often-competing perspectives, and add in the views of many people who are paid to work with people with disabilities, you see the many angles of approach and the competing perspectives.

The United Nations Convention on the Rights of Persons with Disabilities states that “persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life”. As a bearer of a legal right to make my own decisions, I do not need the State to grant me this right; it is inherent to my personhood. I may need support to articulate my decisions, or to receive the information needed to make my decisions in a way that I can understand, or to have somebody who knows me well enough put forward my will and preferences. The Assisted Decision-Making Bill addresses ‘decision-making’ capacity and this is distinct from legal capacity and is in essence ‘mental capacity’.

The Committee on the Rights of Persons with Disabilities (an independent body that monitors State implementation of the Convention) said in 2014, that “Legal capacity and mental capacity are distinct concepts” and that “mental capacity must not be used as justification for denying legal capacity”.

Clearly the Assisted Decision-Making Bill isn’t consistent with this position, as a person can have their decision-making rights removed by court through a Decision-Making Representation Order, notwithstanding that the representative must act within the ‘will and preference’ of the individual.

Ireland has identified the Assisted Decision-Making Bill as the removal of a barrier to ratification of the Convention, not regarding this apparent conflict.

In a future reality where my capacity is in doubt because of a change in my mental functioning, I will need the Assisted Decision-Making legislation. People who know my ‘will and preferences’ will become crucial support mechanisms. These are not necessarily paid people with a checklist or flowchart on ‘functional capacity’ – nor are they medical professionals with a ‘mental age of…’ barometer.

They are not people who will decide what is good for me or in my ‘best interests’. My will is mine, it is personal to me, and my preferences flow from my will. The best people to evidence this are those who know me and my narrative, and that is personal to me.

The Bill went to Seanad stage on November 10th 2015, and barring any last minute amendments or difficulties should be law before Christmas. Although this will be a momentous day and it is true that I for one will certainly toast good riddance to the Lunacy Regulation Act 1871, it does not represent the end of the journey.

When the legislation is reviewed in 5 years, as is set out in law, it will hopefully be in an Ireland that has ratified the UN Convention, and discussion and debate around whether this law satisfies our obligations under the convention (or not!). I would hope that by then a significant body of individuals would have used the supports under the legislation, and in particular the less interventionist mechanisms contained in it.

An analysis of how the legislation is affecting the real lives of people will be crucial to deciding whether the legislation is successful or not.

There is significant work to be done to promote this legislation, and promote confidence in people using the legislation. We need to equip individuals to actually utilise and avail of it, to ensure that people offering services (all services, not just care services) understand their role, and to encourage family members to understand their role too.

There is work to be done to promote self-confidence among people with disabilities that they have a right to make decisions with support and not have that right wrested from them.

Author Bio

Sarah Lennon’s educational background is in law and equality studies. She has worked for many years in disability, equality and social and legislative change. Sarah has worked with Inclusion Ireland since 2006, and in the area of vocational training for people with disabilities prior to that time.  

Among her many areas of work, changes in capacity law have dominated Sarah’s employment to date, and as well as leading out on Inclusion Ireland’s campaigning work, she has developed training and information booklets such as the popular ‘Who Decides & How; Making Medical Decisions’.

guide to voting for people with intellectual disability

Dan Ryan
  • Dan Ryan is a member of the Service-User Forum in Sunbeam House.
  • In 2011, he helped make a video all about how to vote.
  • He thinks this is a very important issue and he wants many others to be empowered to vote.
  • The video was featured on Ireland AM on TV3.
  • It was also entered into a Canadian film festival where it won an ‘Honourable Mention’.

My name is Daniel Ryan. I attend Sunbeam House Services in Bray. In 2011, I made a video called ‘Your Power, Your Vote’. The video was about politicians and politics and voting. I talked about how important it is to vote. I also spoke about how to vote and when you need to vote.

I spoke to a few people about why we vote and how we can decide who to vote for. By asking candidates questions about what they are going to do for people with disabilities and for our local communities, we can then decide who we feel will best support people with disabilities and make changes in our community.

Barry-on-location-filming-your-power-your-vote Dan-on-location-presenting-your-power-your-vote

I also talked about how to register to vote. Mick Teehan supported me to check online to see if I was registered to vote. We checked the register online and I was not registered. I discussed on the video what I needed to do to put my name on the register.

On Polling Day, I went to my local polling station and handed in my polling card. I then cast my vote for who I think I can trust to deliver on what they have promised, and if elected that they will remember our community and will hopefully make a difference.

When making the video, I wanted people to know how important it is to vote and that people with a disability also need to get out and vote and their vote counts.

I also spoke on TV3’s Ireland AM about my video.  I spoke with Sinead Desmond and Mark Cagney.  My mentor Maura O’ Loughlin was also with me on the show.  I felt fantastic when I was on the show, and I felt it was a great opportunity for me, getting to experience being on the TV.

I had great help and support from my staff and friends in Sunbeam House Services.  The Service-User Forum was a huge help to me when I was making the video.

dan on tv3

Shortly after this we entered the video in a disability film festival in Canada and received an ‘Honourable Mention’.


Author Bio

Daniel Ryan is a member of the Service-User Forum in Sunbeam House Services. He is actively involved in Disability Awareness and rights. He is a sharp young man with a positive outlook on life.

My journey to Brussels to the European Parliament supported by Cheeverstown House.

  • Promoting Independent Living
  • Person centred planning
  • Setting up networks of support
  • Supported decision making through the Person Centred Planning (PCP) process
  • Policy Recommendations

I travelled to the EU parliament in Brussels on November 17th 2015.  The conference was organised by Inclusion Europe and it concentrated on Article 19 of the United Nations Convention on the Rights of People with Disabilities. The focus of the conference was on supporting people with an intellectual disability to live independent lives in their communities.

I listened to presentations by MEP Mr Richard Howitt about individuals and the transitions from institutional to community-based care, and successful community living for people with disabilities was discussed.

Using the person-centred planning process to plan a new life and circle of support for a life of your choosing was the key area speakers addressed. It was evident to me that participation of all citizens is a key element to create inclusive societies.

Countries represented at the conference included Spain, Croatia, Holland and The United Kingdom.

Self-advocates spoke on promoting independent living and supported decision making through the person-centred approaches.

The Conference also included the policy input of experts in the field and on good practices collected by partners in the New Path to Inclusion Network, a project in which Inclusion Europe has been involved for the past three years.

The New Paths to Inclusion Network is a European project bringing together organisations, service providers, universities and research centres from 13 European countries and Canada. Their overarching objective is to facilitate the development of inclusive and person-centred support services for persons with disabilities empowering them to lead self-determined lives within their communities.

I addressed the parliament and spoke proudly about working towards achieving my goal of living in my own apartment in 2016.

I made several networks and connections while in Brussels and took a lot of photos. I was extremely proud of myself and the success of the day at the parliament and look forward to visiting Brussels again.

Author Bio

joe-feehilythumbnailMy name is Joe Feehily. I am a 48-year-old gentleman. I am on my way to living in my own apartment and am supported by staff along this journey. I am a DJ, an employee and a volunteer.

I have many interests including wrestling, trips to the cinema, socialising and music. I also present my own radio show in Ballyfermot on West Dublin Access Radio.

I am getting ready to move to my own apartment near my family and friends and look forward to this in 2016