Sunday, July 23, 2017
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Defining supervision is a rather complex task, writes Jenna Doogan. “The struggle to define supervision reflects a growing recognition of how complex the supervisory process is”. Benefiel and Holton, (2010).

  • Jenna Doogan did some research into supervision in the workplace in Not-for-Profit organisations.
  • Jenna found supervision to be helpful in her work life.
  • Jenna was worried at the lack of support and supervision for supervisors and managers themselves
  • Four people took part in this research exercise.
  • Jenna thinks that supervisors in social care area need access to more ongoing professional supervision.

Not so long ago I conducted a piece of research to explore and investigate supervisors’ and managers’ experiences of supervision in the workplace in Not-for-Profit organisations.

According to Share and McElwee, p163 (2005), professional supervision is a partnership process of ongoing reflection and feedback between a named supervisor and supervisee to ensure and enhance effective practice. Provided in a supportive manner it offers a structured opportunity to discuss work, reflect on practice, progress and plan for future development. In describing supervision as a partnership it implies that both participants have responsibilities. It is important that both the supervisor and the supervisee are aware of what is expected of them and what they can expect from one another.

My interest in this piece of research comes from my own belief in the area of Professional Supervision. Personally, as a social care practitioner I have found Professional Supervision to be an enlightening and supportive experience. For me, it is a regular opportunity to reflect on the daily work, discuss responsibilities and duties, monitor and ensure quality of my practice, identify and further develop understanding and skills, seek and receive support and feedback, be constructively challenged, identify areas for further professional development and implement a professional development plan. My experience as a supervisee is that supervision in the workplace is important and necessary; however, I am not sure whether all supervisors and managers in Not-for-Profit organisations have the opportunity to experience the benefits from this.

Personal Relevance to the Study

Prior to beginning the research, I was concerned at the lack of support and supervision that was available to supervisors and managers in the Not-for-Profit sector.

Doing this piece of research, I relied richly on my own personal experiences of Professional Supervision which has provided me with an outlet to enrich my learning and improve my all-round social care work skills. I also relied heavily on the experiences and views from four participants who took part in this research exercise.

Area of Originality

While there is a wealth of research and documentation on Professional Supervision, on review such literature and publications do not cover what supports are available to supervisors and managers in the non-profit sector, and more importantly how best to support supervisors and managers.

It is through supervision that supervisors and managers in the workplace in Not-for-Profit organisations can be supported and encouraged to think differently and develop their skills. This research is based on the belief that good supervision is the very essence of good social care work.

Findings

The sharing of information from the two supervisors and two managers in Not-for-Profit organisations gave me new insights and understandings for the need for supervision. Each of the participants’ experiences and stories they shared, reinforced my belief in the need for Professional Supervision for all staff in Not-for-Profit organisations.

In the light of my study and in view of my own conclusions, I would like to end with some recommendations for organisations, supervisors and managers going forward:

–              Organisations need to become more informed and educated about the nature and practice of Professional Supervision for supervisors and managers in Not-for-Profit organisations;

–              Organisations need be more aware of the importance of developing a strong working alliance with external supervisors;

–              The importance of working with your organisation and not against them;

–              Have a clear supervision policy;

–              Monitor the frequency and quality of supervision for supervisors and managers in the workplace in Not-for-Profit organisations.

Conclusion

This research has provided me with huge insights and valuable information regarding supervisors’ and managers’ experiences of professional supervision in the workplace in Not-for-Profit organisations.

Like so many professions, supervision has been influenced by the changing traditions and trends in society. In the past decade there has been an increasing emphasis on collaborative practice and continuing professional development in the helping professions. This has resulted in the emergence of Professional Supervision.

As a social care practitioner, I have always been very interested in supervision, particularly in organisations. Speaking to supervisors from various non-profit organisations, their experiences were quite similar to my own, which is that supervisors in social care do not have the opportunity to engage in ongoing professional supervision.

Author Bio

Jenna Doogan is an Instructor-Supervisor at Sunbeam House Services, which provides a range of supports to adults with intellectual disabilities in County Wicklow and South County Dublin.

Why we should all support the Love Not Hate Campaign – by Ian McGahon of Sunbeam House Services...

love not hate
  • Inclusion Ireland recently signed up to the Love Not Hate Campaign
  • It is a campaign to bring in a new hate crime law in Ireland
  • People with disabilities do get targeted (sometimes violently) in hate crime
  • In the UK, hate crimes against people with disabilities have included
    • Adam Pearson being told on a YouTube comment he “should have been burned to death at birth” because his face is disfigured
    • Christine North, an intellectually disabled woman, being urinated on while she lay dying in July 2007
  • We should all support the Love Not Hate campaign

Recently, Inclusion Ireland signed up as a supporter to the Love Not Hate Campaign. What exactly is the Love Not Hate Campaign? Why should it be supported by people with disabilities and disability advocacy and human rights organisations? Why do we need the campaign in Ireland and what does it propose?

Love Not Hate is a campaign led by ENAR (European Network Against Racism) Ireland and its Action Against Racism Group. It is a campaign to bring in hate crime legislation in Ireland. Most European countries have laws on hate crime but, uniquely, Ireland does not. The campaign proposes a law in Ireland that provides for sentencing to be increased and for crimes to be treated as more serious if prejudice or hate can be shown to be a motive.

A hate crime is, typically, a violent crime motivated by prejudice, when a perpetrator targets a victim because of their perceived membership of a certain social group. People targeted by hate-motivated crime in Ireland are usually from an ethnic minority background (racist hate crime), from a religious minority (religious hate crime), Lesbian, gay or bisexual (homophobic hate crime), Transgender (transphobic hate crime), People with disabilities (disablist hate crime).

Disablist hate crime or hate crime where people with disabilities are targeted because of their disability is something that rarely gets discussed or highlighted in public or in the media. In the UK it has become a growing phenomenon, because the public discourse has turned against people in receipt of state welfare support and portrays them as scroungers and spongers, and certainly people who use wheelchairs are violently targeted.

Adam Pearson, a UK actor, highlighted the issue last year on BBC3. He has a severe facial disfigurement and was told on a YouTube comment he “should have been burned to death at birth”. No action was taken by the state or YouTube on this despite, as Pearson points out, the fact that perpetrators of racist online comments on Twitter have been prosecuted.

Pearson now campaigns on the issue of disablist hate crime, and has highlighted several cases. Kevin Davies, an epileptic aged 29, was kept in a shed by “friends” where he was fed on scraps and beaten for weeks before he died in 2006. One of his torturers kept a diary of the abuse. Christine North, an intellectually disabled woman, collapsed and lay dying in Hartlepool in July 2007, neighbour Anthony Anderson urinated on her. He also egged on a pal to film the incident.

We are all probably very aware of hate crimes that target migrants, black people, Muslims, refugees and lesbian, gay, bisexual or transgender people, but honestly, how many of us really take the issues of disablist hate crime seriously? Until approximately 3 years ago I didn’t take it too seriously as an issue either. Since then I’ve seen it in voluntary work that I do with the Council of Europe’s No Hate Speech Movement and I’ve also seen it in my own day job. I work with people with intellectual disabilities, and have been told of several cases of verbal abuse and harassment (thankfully nothing seriously violent).

When I was researching this article, I found 2014 statistics on hate crime in Ireland published by the OSCE (Organization for Security and Co-operation in Europe). To me they were startling, and showed that we in Ireland do not take this issue seriously at all. The OSCE found two things: one, that 53 crimes were recorded by Gardaí as having a bias motive, and two, that 171 crimes were recorded as having a bias motive by NGOs and civil society organisations. Only 1 of these 171 was recorded as a disablist hate crime. At face value, this may suggest that disablist is not a big problem in Ireland. However, delving further into this it is clear that dozens of hate crimes were obviously not reported to the Gardaí. Additionally, when we look again to the UK, the police there found in a 2013 report that disablist hate crime was not taken seriously enough in how it is prosecuted.

I was personally involved in researching hate crime against LGBT people in Dublin in 2006, and we found huge under-reporting. Considering all of this (the OSCE data, the UK experience and my own personal experiences of researching hate crime against LGBT people and being aware of people with disabilities subject to verbal harassment), I firmly believe that Ireland is not taking the issue of hate crime seriously. We need to update our hate crime laws, and disablist hate crime needs to be firmly recognised.

The Love Not Hate Campaign is something all of us should be supporting.

We need to send a clear message that racism, homophobia, transphobia, disablism and hate have no place in our communities and that our society must be inclusive of all.

We need to update Ireland’s hate crime laws for many reasons.

We must break the silence on hate crime, encourage people to report it, and find effective ways to address all forms of prejudice.

For more information on the campaign see http://enarireland.org/hatecrime/

Author Bio

ian mcgahonIan McGahon works in Sunbeam House Services, supporting people with intellectual disabilities. In his spare time he is a campaigner on various equality and human rights issues. He volunteers with No Hate Speech Movement, a Council of Europe youth campaign promoting human rights online. In particular he has campaigned on LGBT rights and led the Yes Equality marriage equality referendum campaign in Co Wicklow.

  • This article is for nurses working with people who have an intellectual disability.
  • It tells nurses that each person with an intellectual disability should have a care plan.
  • A care plan tells the nurse how the person with an intellectual disability would like to have their needs met.
  • The article gives the nurse five (5) ways to plan care with the person with an intellectual disability.
  • It looks at the good and not-so-good parts of each way.

Registered Intellectual Disability Nurses (RNID’s) are unique, being the only group of professionals who are educated solely to work with people with an intellectual disability (ID) (Northway et al 2006).  This specialised education is only available in Ireland and the UK.  RNIDs work in a wide range of settings, and have a diversity of roles and skills (one of which is care planning) in addressing  the needs of the person with an ID.  Good nursing practice dictates that the best available evidence should underpin healthcare decision making.  Whether working individually, or as part of a wider interdisciplinary team, all care provided by the nurse should be guided by a care plan.  Care planning is an ongoing process of working with the individual, involving assessment, planning, implementation and evaluation of the individual’s needs, culminating in a written care plan that documents the individual’s specific needs and how those are to be addressed.  Devising a care plan can be a complex process; therefore using a framework of care for guidance can make care planning more achievable.

As there are multiplicities of frameworks of care available, selecting the most appropriate one for the individual can be an onerous task.  This can be further complicated by the variety of practice settings within which intellectual disability nursing takes place, and the current needs of the individual e.g. health, social, educational and/or a combination of needs.  RNIDs need to understand the components of the various frameworks, and be able to justify the selection of the most appropriate framework to guide the development of the individuals care plan.  The components of a good framework of care should be specific to addressing the person’s individual needs, informed by evidence and seen as a continuous process of discussion, observation, planning, implementation and evaluation.  This paper presents a brief overview of the ideology underpinning five such framework approaches that the nurse can draw upon, along with some of the more common advantages and disadvantages associated with each one (Table 1).

Medical Model

The use of the medical model approach can be traced back to Hippocrates, Aristotle and Galen and has guided medicine and nursing across the centuries.  Since Nightingale’s era, the nursing profession has adopted an assessment, diagnosis, prescription and treatment model of care (McKenna and Slevin 2008).  Unfortunately, this diagnosis-orientated approach does not allow for independent thinking or holistic care within nursing.

Biomedical Model

This model is connected with scientific rigour and objectivity, and linked with well-established areas of science and medicine (Bickenbach 1993).  Using this model, disability can be classified, quantified and measured or rated (Smart 2009).  It is also linked with fragmenting the disability community, identifying individuals by their diagnosis e.g. the deaf, the blind.  Labelling the person with ID using the biomedical model legitimises disability as the individual is diagnosed as biologically inferior, thereby increasing the chance of stigma and prejudice (Smart 2009).  It is linked with routinisation of care (Pearson et al 2005) and should be questioned and challenged for its failure to address the social, physical and human barriers to disability or economic, political or social issues.

Bio-Psycho-Social Model

The biopsychosocial model of health and illness adopts a holistic view of health.  It combines biological, psychological and social factors, acknowledging that all play a significant role in human functioning in the context of disease or illness (Smeltzer 2007).  This framework views disability as arising from a combination of factors at the physical, emotional and environmental levels.  This approach takes the focus beyond the individual and addresses issues that when combined, affect the ability of the individual to maintain as high a level of health and wellbeing as possible, and to function within society.  Recognising that disabilities are often due to illness or injury, it does not dismiss the importance of the impact of biological, emotional and environmental issues on health, well-being, and function in society.  The disabling condition, rather than the person and the experience of the person with a disability, is the defining construct of the biopsychosocial model.

Nursing Model

In an attempt to move away from the medical model of care, nursing models were developed in the 1960s and are described as frames of reference, providing guidelines which facilitate the nursing process (assessing, planning, implementing and evaluating nursing care) and enhance the quality of care (Fawcett et al 1992). There are numerous models of nursing available, each representing a distinct way of thinking about and guiding nursing practice (Murphy et al 2010).

Roper, Logan and Tierney Model of Nursing

Developed in the 1970s, the Roper, Logan and Tierney model of nursing is based on a model of living which views the person as an active participant in the development of their nursing care. It focuses on identifying the person’s actual and potential problems in 12 activities of living (ALs). It takes into account the biological, psychological, sociocultural, environmental and politico-economic factors that influence the person’s ALs, and the lifespan or stage of development of the person. Also, the inclusion of a dependence/independence continuum acknowledges the person’s changing health status during illness. These four components culminate in the development of an individualised nursing care plan framed by the nursing process (Tierney 1998). This is the most widely used nursing model in ID settings.

Ecology of Health Model

In response to practitioners’ desire for a specialist model of nursing, the ecology of health model was developed in order to specifically address the healthcare needs of the person with intellectual disabilities (Aldridge 2004). The person is seen as having physical and psychological elements that form the self and which exist within a social environment. The person relates to their environment through a process of interaction, thus forming an ecological system. Underpinning this model is the idea that all care plans are person-centred, structured and purposeful. The model allows for contributions from the individual and also reflects what is important to the person in their life, in turn promoting person-centeredness. Its implementation in ID settings, with its holistic approach, deems it influential in ID practice (Barr 2005).

Social Model

The Social model approach is the antithesis of the medical model; it emerged as a reaction to the dominance of the medical model from the analysis of the experiences of institutionalised disabled persons (Scullion 2010). Within this approach, the emphasis is not on the person’s disability but on the way in which physical, social, and/or cultural environments disadvantage or exclude people with disabilities.

Social Model of Disability

This model developed in the mid-1970s, relating to people with physical and sensory impairments. It  differentiates between impairment (i.e. loss of function of the body) and disability (i.e. meaning society attaches to the presence of impairment) (Chappell et al 2001). Disability is viewed as a consequence of society’s lack of awareness and concern about those persons who may require modifications in order to lead full lives. This model sees staff delivering care within the home, with involvement in decision making and care planning by the person and his/her family. The notion of addressing rights and equality is to the forefront of this model, with nursing interventions focused on increasing social inclusion by reducing or eliminating barriers to good health (Northway et al 2006).

Person-Centred Planning

Person-centred planning (PCP) is identified as one of the key points for the delivery and development of services for persons with disabilities. Underpinned by core values, and the central tenet being putting the person first (Valuing People 2001, National Disability Authority (NDA) 2005), it acknowledges that care begins with the individual and focuses on what the person and the family think is important for the person, as opposed to what the healthcare professional considers to be necessary for the person (NDA 2005).

Personal Outcomes Measures (POMs)

Quality of Life measures are used to assess the impact of service initiatives on the lives of people with ID and to guide programme delivery (McCormack and Farrell 2009). POM’s place emphasis on quality assurance and quality improvements within services to support person-centred development (Gardner and Carran 2005). The move away from congregated settings towards community settings was the impetus for the development of these measures to assess quality.

Person-centred nursing framework

The person-centred nursing framework (McCormack and McCance 2006) contains four constructs focusing on the professional competence of the nurse, i.e. the nurse’s knowledge, decision making, prioritising and delivery of care. The care environment addresses the context within which care will be delivered. The person-centred process focuses on engaging with the individual, acknowledging their beliefs and values and facilitating shared decision making and the delivery of physical care by a competent nurse. The outcome construct addresses the expected results from the person-centred planning.

Eclectic approach

An eclectic model of care is one that combines elements from different frameworks that include a reflective, person-centred, evidence-based and outcome-focused approach to care, and above all ensure best practice for the individual. McKenna (2009) suggests that each nursing framework is limited by the vision of its creator and no one framework can deal with all eventualities. Any combination of frameworks may be used with the key aspects of concepts incorporated to achieve a new or differing nursing framework.

Eclectic modelof care

Moulster et al (2012) developed an eclectic model of reflective and evidence-based person-centred care for use with individuals with ID, amalgamating elements from Roper, Logan and Tierney (Roper et al 2000), the Tidal Model (Barker 2001), Orem’s Self Care Model (2001), Ecology of Health Model (Aldridge 2004) and Person-Centred Nursing Model (McCormack and McCance 2006). This model has been shown to improve clinical governance, makes outcomes easier to measure, and the effectiveness and/or ineffectiveness of the outcomes easier to identify.

Discussion

Frameworks of care in practice guide the assessment, planning, implementation and evaluation of care and support in practice, in turn developing and maintaining consistency in how care is delivered.  RNIDs have a duty to underpin their practice with evidence-based frameworks of care.  These frameworks all contain concepts capable of being researched and research evidence underpins practice, therefore the adoption of frameworks is an important factor in developing evidence-based effective nursing practice.  They are also useful in nurse education as tools to identify what nursing is, who the recipients of care are and what skills and knowledge RNIDs  should possess in order to be fit for practice.  The provision of high quality, safe nursing care is central to nursing practice – thus, care delivered through a framed knowledge base is more likely to be of a high standard (Cutliffe et al 2010).

What is evident is that no one framework can reflect all of the needs of a person with ID, and therefore diversity in frameworks will allow individual models build upon each other. Individuals’ needs change according to the stage of their lives, or their physical, mental and social health status, and so the nurse must be skilled in selecting the most appropriate framework, most suited to address the person’s current needs. This may involve combining a number of elements from various different frameworks. Cross-modelling can be strengthening and enriching (Walkup 2000), and nurses with increased awareness of a variety of frameworks and their strengths and weaknesses, can make informed judgements on which particular framework suits the individual and the practice setting. Each framework is capable of adaptation; therefore RNIDs need to be cognisant of the potential to refine or modify a chosen framework.

While the authors have provided an overview of various frameworks that can be used with persons with ID, there are numerous others that can be adapted for use in a variety of health and social care settings. For example, Peplau’s model has been used to frame care delivered to children with ID in the community (Doyle and Buckley 2012), and Barkers’ (2001) tidal model has been adopted to support persons with ID who also have mental health difficulties.

Conclusion

This paper has provided an overview of five framework approaches used with persons with ID in planning care. Key advantages and disadvantages of those reviewed have been identified. The decision to use a specific framework approach with persons with ID should be well-informed, and its components should be fit for purpose, meeting the needs of the person with ID.  Frameworks of care represent an important and integral part of intellectual disability nursing practice, and are powerful in meeting the needs of the person with ID in the 21st century.

Table 1: Advantages & Disadvantages of Framework Approaches

table


References available from authors on request
 

Author Bio

Sandra Fleming and Carmel Doyle are Assistant Professors at the School of Nursing and Midwifery, Trinity College Dublin.

Sarah Lennon assesses the progress of the proposed capacity legislation, and previews the impact that legislation will have on decision-making for people with an intellectual disability

  • Ireland is in the process of changing its law around how people make decisions.
  • At the moment we have an old law in place called the Lunacy Act under which people can be made Ward of Court and lose all of their rights to make decisions for themselves.
  • Inclusion Ireland has campaigned for many years to have the law changed and for people with capacity issues to be supported in making decisions.
  • These decisions could be about money, medical treatment, where a person lives or goes to work, travelling or voting.
  • Ireland is introducing a new law called Assisted Decision-Making.
  • This will improve things a lot for people with disabilities, their families and people who work in the area.
  • It will make it clearer who can and cannot make decisions and it will ensure that people with disabilities have a right to access support of their choosing in making decisions.

For those who have campaigned for modern capacity law through the years, there was an important milestone recently.  The Assisted Decision-Making (Capacity) Bill 2013 progressed through select committee stage – which is the third stage in a five-stage process of making law. Stages 4 and 5, called report and final stage respectively, are normally seen as procedural and there is genuine optimism that the end of the road is in sight.

It is fair to say that there was a sense of euphoria at the committee sitting at Leinster House on Wednesday, June 17th, not least because a mammoth 417 amendments were tabled, discussed and voted on.  The number of amendments demonstrated the seriousness of this legislation and the extent of the consultation on it.

Inclusion Ireland made many observations and submissions and were happy to see that very many of these asks were taken on board.

If enacted before the end of the year, it will mark the end of a two-year process, but that does not even represent the tip of the iceberg. Minister of State Kathleen Lynch remarked how she had spent two decades, both campaigning for change in opposition, and progressing the legislation as a junior minister.

Inclusion Ireland has been campaigning for a similar length of time for reform in this area.  The legislation that we have at present is not fit for purpose in a modern republic.

I was employed by Inclusion Ireland in 2006 on a project called ‘Who Decides & How’ to provide information and training, and to campaign for changes in capacity law. The law at this time – and today until this legislation is passed – was the Lunacy Regulation Act of 1871.

This relic of Victorian rule prevails today with over 100 people per annum with intellectual disabilities alone brought into a system called “Ward of Court”, typically because of inheritance of money, a settlement of a legal action, to facilitate the sale of a property or an injection of money into their lives.

The impact of being made a Ward of Court is huge, a person sees not only a restriction on their financial affairs but a restriction on travel, marriage and relationships, where a person lives and medical decision-making.

By any international human rights standards, and certainly by the United Nations Convention on the Rights of Persons with Disabilities, the Lunacy Act does not pass muster.

It has been almost a decade since I began working in this area and although there have been forays into law reform, the landscape is the same and although highly optimistic that we will get this Assisted Decision-Making Bill over the line, we have seen some false dawns in the past.

A genuine catalyst for reforming the law in this area began in 2006, when the Law Reform Commission followed their report on the elderly with a report into vulnerable adults.  The Commission recommended that our Lunacy Act, the system responsible for creating Ward of Court and all the restriction that goes with that system, be repealed.

The Commission also recommended that a ‘functional’ approach to decision making, one that looked at the particular decision at the particular time, be used rather than the ‘status’ approach of Wardship which declared a person incapable of all decisions and changed their status to lunatic, idiot or of unsound mind.

In the years that followed there has been a cascade of events that have led us to this point and Inclusion Ireland has been central to a lot of this work.

In 2007, Inclusion Ireland arranged for Michael Bach from British Columbia in Canada to speak at a seminar.  Professor Bach spoke of Supported Decision Making, the ‘right to decide’ of those who can only express their will and intent, and the concept of personhood being articulated by other people who were sufficiently knowledgeable to understand a person’s unique communication.

All of these concepts, while operational in British Columbia, were alien to an Irish audience where the 19th Century law prevailed as the only form of ‘adult guardianship’ and assisting or supporting decision-making was not available on a legislative basis.

In the same year Senator Joe O’Toole and Senator Mary Henry sponsored a Private Members Bill on Mental Capacity & Guardianship, borrowing heavily from the Law Reform Commission report.  This Bill lapsed shortly after initiation in the Seanad, as the Government intended to initiate legislation on the same topic and did so in 2008.  The focus of the law at this time was very much on substitute decision-making and guardianship, and while Inclusion Ireland welcomed the Bill, we stated at the time that the Bill did not go far enough.

At a conference in 2009, Inclusion Ireland commented that the focus of any capacity law should be on legal capacity and not mental capacity – we argued for the removal of terminology such as care, protection, best interest, guardianship and other paternalistic language.  It was a source of major frustration and disappointment that following the 2011 General Election, the Bill lapsed as a new government, with new ideas, came into existence promising to “introduce a Mental Capacity Bill that is in line with the UN Convention on the Rights of Persons with Disabilities”.

And in July 2013, the Assisted Decision Making (Capacity) Bill was introduced, having been championed by Minister for Justice Alan Shatter, Minister of State Kathleen Lynch and Chair of the Justice Committee David Stanton.

A significant consultation process commenced, almost two years passed and a genuine concern emerged that this Bill could go the way of the 2008 Bill and slip off the table quietly in the build up to the next General Election.

Inclusion Ireland organised a campaign to highlight the need to legislate, called ‘Fool Me Once’, using April Fool’s Day to draw attention to the offensive language in the Lunacy Act.  We were heartened by David Stanton’s comments on that day that the Bill’s return was imminent, and so it proved.

The Bill, along with 417 amendments was before the Justice Committee and what was clear was that a significant number of amendments put forward by Inclusion Ireland and others had been taken on board.

Although we have reached an exciting and pivotal point in the progress of law in this area, we are not yet at the finish line.  There are still elements of the Bill that are not perfect, with a concentration on mental or decision-making capacity rather than legal capacity prevalent throughout.

Inclusion Ireland remain concerned that there is no legal aid process in place for families or persons who wish to access decision-making representation agreements in court, although the Minister did commit to revisiting this matter.  Inclusion Ireland welcomed the expression that there would be involvement of the National Disability Authority and Citizen’s Information Board in developing codes of practice in the Act.  However, we will be advocating for the involvement of people with intellectual disabilities and other experts through experience in drawing up these guidelines.

What is clear is that the Assisted Decision Making Bill as amended will mark the end to a draconian Lunacy and Ward of Court system that caused misery for thousands of affected Irish people.

What this Act will bring will be a statement of the rights of people with intellectual disabilities to make their own decisions and a legal entitlement to the supports and assistance they need.  There will be an end to the informal and unregulated dilution or removal of persons with disabilities’ decision-making rights.  Ireland can make great strides towards ratification of the UN Convention.

For people with disabilities, their families and people who work with them it will mean that there is finally an answer to the question ‘Who decides, and how?’  After 144 years of the Lunacy Act, there is nobody who can say that it is not before time.

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 the many areas of work, changes in capacity law has 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’.

Kathleen Lynch, TD, Minister for primary Care, Social Care (Disabilities/older people) and Mental Health introduces Frontline's first e-publication and in doing so addresses the issues of Standards, Regulation and Quality of life.

Kathleen-Lynch-TD
High standards are expected with regards to our quality of disability services. HIQA inspect our services to make sure the standards are being met.
The recent events in Áras Attracta show that staff and management must be vigilant.
The National Disability Authority (NDA) is to conduct an independent review, one year on, by June 2015.

People with disabilities should be given the opportunity to live as full a life as possible and to live with their families, and as part of their communities, for as long as possible.

Every person who uses our disability services and our services for older people, is entitled to expect and receive supports of the highest standard and to live in an atmosphere of safety and care. It is important that we all continue to set our sights high and keep our expectations raised about what people have a right to expect of their services and of society in general.

The Programme for Government committed to putting National Standards for Residential Services for People with Disabilities on a statutory footing, to ensure that the services could be inspected by the Health Information and Quality Authority (HIQA). This commitment was fulfilled when two regulations, one relating to care and support and the second relating to registration issues, were approved and signed by the Minister for Health, with the scheme commencing on 1 November 2013.

The purpose of the regulations is to safeguard and support the delivery of person-centred care to vulnerable people of any age who are receiving residential care services and to ensure that their health, well-being and quality of life are promoted and protected.  Over 670 HIQA inspections of disability services have taken place to date.

The recent shocking events in Áras Attracta clearly demonstrated that in addition to the statutory regulations, there is an onus on staff and management in services provided by or on behalf of the HSE to safeguard and protect vulnerable people in the care of the health service. This is of paramount importance and the Director General of the HSE has written to all staff instructing them to take personal responsibility for ensuring that individuals supported by the HSE in any setting are treated with dignity and respect.

The HSE has undertaken a number of additional initiatives to ensure that quality and safe care in residential services for people with disabilities is appropriately implemented and monitored. The “Safeguarding Vulnerable Persons at Risk of Abuse – National Policy & Procedures Implementation” policy document was launched on 5th December 2014. It is relevant to all HSE and HSE-funded services staff. It builds on and incorporates existing policies in HSE Disability and Elder Abuse services, and in a range of other Disability Service providers.

If any readers of Frontline have concerns regarding patient care or safety, I urge them to bring it to the immediate attention of the service provider under the arrangements set out in these guidelines.

I have invited the National Disability Authority (NDA) to conduct an independent review, one year on, to capture learning to date from the introduction of the system of regulation, standards and inspections in relation to residential disability services. The review is to capture the experience, impact and learning from the introduction of the system of regulation, standards and monitoring of residential disability services, and also highlight the range of good practices which are in place.

I expect the NDA to have completed its final report and submitted to me by June 2015.

Finally, I can assure you all that as Minister for Primary Care, Social Care (Disabilities/Older People) and Mental Health, I and my Department will monitor progress on the initiatives and processes commissioned by the HSE in relation to Áras Attracta, to ensure that the lessons learnt from this incident will be driven throughout our health system to better protect vulnerable people.

Author Bio

Kathleen Lynch was appointed Minister of State at the Department of Health with special responsibility for Disability, Mental Health and Older People in March 2011.  In July 2014, she assumed responsibility for Primary Care while retaining responsibility for Mental Health, Disability and Older People under the Social Care element of her portfolio.

by Mary De Paor

The UN Convention on the rights of people with disabilities, published in 2006 and promptly signed by Ireland the following year, has still not been ratified by Ireland. Partly that is because of the long delays in passing into law the Assisted Decision-making (Capacity) Bill 2013.That bill has been ‘in the pipeline’ since it was first proposed in 2008 by the Minister for Justice (then Dermot Ahern). Unfortunately our legislators have been convulsed by other (aqueous) pipelines recently, and the Bill remains at committee stage, with no apparent prospect of advancement during the current Dáil term.

In the last twenty-five years, many hefty tomes of policy documents have been published in the arena of intellectual disabilities in Ireland—from Needs and abilities (1990), A strategy for equality (1996) to A time to move on from congregated settings (2011) and New directions (2012).

The UN Convention on the rights of people with disabilities, published in 2006 and promptly signed by Ireland the following year, has still not been ratified by Ireland. Partly that is because of the long delays in passing into law the Assisted Decision-making (Capacity) Bill 2013.That bill has been ‘in the pipeline’ since it was first proposed in 2008 by the Minister for Justice (then Dermot Ahern). Unfortunately our legislators have been convulsed by other (aqueous) pipelines recently, and the Bill remains at committee stage, with no apparent prospect of advancement during the current Dáil term.  We in the intellectual disability community are crying out for our people to shed the labels of the Lunacy Act 1871—and, nearly 150 years later, to be given the legal status to participate as fully as possible in Irish life. Real Irish life.

Moving ahead: Mapping the national disability policy landscape (Linehan et al, 2014) provides a summary of the ‘six high-level policy documents [that] have been published which propose radical reform of the disability sector …. This raft of policy is complimented [sic] by other publications emanating from semi-state bodies such as the National Economic and Social Council and the Economic and Social Research Institute. The sheer quantum of policy reflects a prioritisation of reform within the disability sector by Government’ (p.12).

Accompanying policies, we also have strategies. In 2011, The Department of Environment, Community and Local Government published a National housing strategy for people with a disability 2011-2016, the ‘vision’ of which was ‘to facilitate access, for people with disabilities, to the appropriate range of housing and related support services, delivered in an integrated and sustainable manner, which promotes equality of opportunity, individual choice and independent living’ (p.7).

The National implementation framework for the housing strategy was published in July 2012, and the First report on implementation, September 2012 – December 2013 said that Housing Subgroup was providing ‘a suite of guidance tools … to assist housing authorities in implementing the Strategy at local level in order to meet the housing needs of people with disabilities living in the community and transitioning from institutional care.’ This included ‘an interim protocol in relation to the provision of housing supports for people with disabilities,’ adopted for implementation by local authorities in May 2013. An Easy to Read version of the Strategy was also published (in 2013) to help people with intellectual disabilities to access information on housing options. There was also a ‘scoping paper’ in relation to the establishment of a number of pilot Housing Advice Centres to provide an integrated approach to the provision of information for people with disabilities on their housing and related support needs. The Strategy was a ‘priority action under the Government’s National Disability Strategy Implementation Plan’, and a ‘housing thematic meeting was held by the NDS Implementation Group in December 2013 which provided a wider range of stakeholders with an opportunity to input into future policy.’

The implementation progress report included financial considerations. Some sums had been ‘ring fenced’ by the Departments of Health and Environment for a pilot programme of deinstitutionalisation following the congregated settings report. However, the report stated: ‘It is recognised that there is no dedicated funding stream to support the personal support needs of people living in communities who wish to pursue a social housing option. This issue will be examined in the context of work to be undertaken by the Housing Subgroup in 2014 in respect of tenancy sustainment services and costs to facilitate independent living in line with the UN Convention of the Rights of Persons with Disabilities.’

Another future-tense policy statement was that ‘the DECLG will continue to explore mechanisms to increase the supply of social housing for people with disabilities, including through engagement with NAMA on the delivery of units which may be suitable and opportunities arising in the context of additional investment in local authority housing in 2014 through construction and investment to bring long term vacant units back into social use.’

Most recently, we have the Social Housing Strategy 2020 (November 2014), which incorporates (in ‘Box 3’, p.16) the disability strategy. If you print out the document you can monitor the delivery of 37 social housing strategy actions in five ‘work streams’, over the five years of the strategy implementation. The actions include familiar terms: ‘agree targets’, ‘commence legislation’, ‘strengthen’, ‘carry out an internal review’, ‘carry out detailed analysis’, ‘consider the development of’ …

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Ireland is very good at devising impressive policies. A quick search on Google shows many more like those above. Canny Frontline readers-between-the-lines may have guessed that this author is a policy-cynic! We talk the talk, but …

Recently, I attended a meeting at an ID support service where parents voiced raw concern for their family member’s support needs, and for a place to live independently. Despite very innovative thinking within services, the 20% reduction in their funding over the past five years has inevitably led to staffing reductions and programme retrenchments. It can seem a very gloomy world.

But, we need to focus on the positive. Never mind the policies—they only lead to disillusionment and frustration. It is more important for families to learn more about the real ‘system’, its possibilities and limitations. They can find advice from the Citizen’s Information Board, or training from Inclusion Ireland, Pathways for Possibilities or Leap. (online editor: can you put website links here please?). Collaboration is vital—with their family member’s disability service and with other families (see Avril Webster’s article in Frontline (Autumn 2013, 92, p.7).

People with disabilities have been ‘mainstreamed’ by the policy world—it has been beneficial in some ways, but also costly. National resources are limited. We in the world of intellectual disability must accept that others in our society also have ‘special needs’. We can only fight for an equitable share, by strongly advocating for the valid and demonstrable support requirements of our people. And we need to add our own resourcefulness to the equation as well.