Thursday, March 23, 2017

Cormac Cahill of Inclusion Ireland shows us a little of what can be achieved in purpose-built, accessible accommodation for people with physical disabilities.

Accessible facilities 1
Muscular Dystrophy Ireland (MDI) have a ‘Home from Home’ apartment in Dublin. It is available for short-term stays for people with a physical disability and their friends and family members.

Muscular Dystrophy Ireland (MDI) is a voluntary organisation that provides information and support to people in Ireland with muscular dystrophy and allied neuromuscular conditions, and their families, through a range of support services.

The MDI ‘Home from Home’ apartment is located in a new purpose-built, fully accessible self-contained building in Dublin. It is available for short-term stays for people with a physical disability and their friends and family members.

The apartment consists of four bedrooms, a kitchen and a lounge area and can accommodate groups of one to six people.

Guests are asked to make a voluntary contribution of €25 per room, per night to stay in the apartment.

Accessible facilities 2

The apartment is equipped with aids and appliances, including ceiling and standing hoists, shower chairs, grab rails, an intercom system, emergency call buttons, emergency evacuation chairs, an adjustable kitchen counter and air mattresses.

Three of the four bedrooms in the apartment are fully accessible and contain Hi-Lo electric profile beds and ceiling tracking hoists.

Each of the bedrooms has its own bathroom, all of which are also equipped with a ceiling track hoist. The bathroom and shower can be accessed directly by use of the inter-connecting ceiling track hoists between the bedroom and bathroom. All visitors to the apartment are advised to bring their own slings.

Please note that the twixie clip slings do not work on the hoist system. The fourth bedroom contains a standard single bed and is primarily used by personal assistants and family members.

The kitchen is equipped with an adjustable motorised work top which enables the work surface height to be adapted to a suitable level for all users. It contains all modern appliances and laundry facilities.

Availability throughout the year varies, but the MDI is more than happy to accommodate anyone with a disability and their friend and family members when they can.

The ‘home from home’ has been used by people going to concerts, international visitors, as accommodation during or awaiting a hospital appointments and by people who wish get experience of Independent Living.

MDI provides information about how to use equipment within the apartment and other necessary information to help you to make the most of your stay.

MDI also provide you with information about services available in the local community, places to visit in Dublin and details about local public transport and other ways to get around Dublin.

Accessible facilities 3

To book the apartment please contact MDI on (01) 6236414 (from 9.00am-5.00pm) or email

Further details about the apartment and MDI can be found on

For more information, please follow this link:

Author Bio

Cormac Cahill, Communications & Information Officer

Inclusion Ireland, Unit C 2, The Steelworks, Foley Street, Dublin 1

Office: 01-8559891  Mobile: 086 837 3394  Fax:  01-8559904

It’s a busy life for an active member of the community with special needs, as John Feighery says in his first article for Frontline Magazine.

My name is John Feighery. I am 24 years old, I have special needs. I was born with Down’s Syndrome but that has not stopped me from growing into an active member of my community.

I am a volunteer in Porterstown Pastoral Centre. Every Sunday from 11:00am-12.30pm, the community meet for a cup of tea and a chat after Mass. My role is to give out the tea and biscuits, I also collect rubbish and wash the dishes. I am very friendly and I talk to everybody, especially the children.

I am also a Minister of the Eucharist for the church. I take part in the local pantomime every year. I sing and dance and have a part to play. I am the same as everyone else in the pantomime and we make the audiences very happy.

There is a lot of sadness in the world so when my friends and I in the local Special Olympics ALPs decided to have a Book and Art sale, we decided to give the money we made to a good cause. We picked the Laura Lynn Hospice for sick children. We made €1,700- The director of Laura Lynn was delighted with that donation from our group and we were happy to help sick children.

I often give presentations to Transition Year students about my life so that they may understand that just because I have special needs, it does not make me any different from them.

My Dad says that it is good to help out in the community, because it encourages other people to help out also. My mentor and I asked my parents what my good points were, and they said that I was a very good listener, that I would talk and listen to all the families who come to church for Mass, Christenings and Marriages.

When I talk to people and they have worries or sick family, I pray for them every night. People like to talk to me because I am a good listener and I make friends easily with everyone.

I work for two hours every week in a Starbucks Cafe. I love when people I know come in for a cup of coffee. I also have a work placement in the Elbow Room in North Brunswick Street. I am able to get there by bus which makes me very independent. I would enjoy having another job near home.

I think that people are comfortable talking to me. When I go to the local shop and shopping centre I make lots of friends. I love the Golden Discs shop and I know all the people who work there. When I go to the town centre people from the Cinema, Eason’s Book shop and clothes shops all know me by name and talk to me.

I wanted to write this article to let people know that I, as a special needs person, have a lot to offer in my community.

Author Bio

5 - Citizen John - John Feighery photoWhen he’s not busy working and helping in the community, John Feighery lives in Clonsilla, Dublin, 15.

Niamh McEnerney, member of the Dublin Mid Leinster (DML) End-of-Life Sub-Group, shares her findings from her research, which asked the question: What are the end-of-life needs of Adults with Intellectual Disability?

  • HIQA have published standards relating to the ‘end of life’ care for people with disabilities.
  • The findings were grouped into four main categories;
    • physical,
    • emotional,
    • social
    • spiritual.


Ireland’s independent health safety, quality and accountability regulatory body, The Health Information & Quality Authority (HIQA) published the National Standards for Residential Services for Children and Adults with Disabilities in 2013.  Within these standards, the need for appropriate end-of-life care for adults with Intellectual Disability (ID) was highlighted.

People with life-threatening or life-limiting conditions and their families have

access to specialist palliative and end-of-life care, receive care and support,

which meets their physical, emotional, social and spiritual needs and respects

their dignity.’

(HIQA, 2013)

Disability services within the DML region voiced their need for support in meeting these challenging end-of-life needs, and asked for the sharing of practices, experiences and documentation to help improve care in this area. With this goal in mind, the DML End-of-Life Sub-Group set about compiling a guideline to meet those needs.  To support the development, it was important firstly to clarify the actual needs of adults with Intellectual Disability at end-of life. This article focuses on the findings of that research.


The main findings of the systematic review originated from the United Kingdom, United States, Netherlands, Canada and Ireland and came from three main perspectives; those of adults with ID, of their families and of healthcare professionals.  The findings were then grouped into four core categories; physical, emotional, social and spiritual, and themes were identified.


  1. Physical


Symptom Control and Management

The first need related to concern about physical comfort and symptom management at end-of-life and was reported by adults with ID (Tuffrey et al., 2007) and care staff (Weise et al., 2012; Todd, 2013; Kirdendall and Waldrop, 2013) in a number of studies. To achieve good symptom management, the need to know adults’ ‘habits and behaviours’ (Li and NG, 2008) was seen as important, with a person-centred approach being central to its achievement.

Medical Decision Making

Research from the Netherlands agreed with a person-centred approach, with medical doctors stating that more involvement with adults with ID was needed when discussing end-of-life issues.  Regular meetings, with clearly-defined roles and responsibilities for all involved in end-of-life care, was stated as an essential requirement (Wagemans et al.2013).

  1. Emotional


The quality of relationships, the need to allow expression of individuality and the desire to address grief and bereavement were emotional needs identified by healthcare professionals, for adults with ID at end-of-life (Kirkendall and Waldrop, 2013).  The need for individuality was reflected by Clute and Kobayashi (2012), who noted that adults with ID felt they were ‘invisible’. It was suggested that if emotional well-being is to be promoted, it needs to be strongly linked with a clear communication plan that encourages open dialogue with the adult, family and healthcare professionals involved in providing support and care.  Challenging issues relating to ‘protecting’ adults from difficult decisions and not disclosing information, was rated as a significant concern leading to emotional distress.  In addition, supporting healthcare professionals to assist adults in recognising loss and grief was listed as a further area requiring appropriate training.

  1. Social


The theme of communication continued when linked with social aspects of care, with the need for clear communication at end-of-life being highlighted by a number of studies (Grossberg et al., 2013).  While each adult has different needs, issues in relation to disclosure of diagnosis and prognosis were noted to need sensitive discussion.  Clute and Kobayashi (2012) found the challenge of families and healthcare professionals ‘protecting’ adults, raising the issue of non-disclosure of diagnosis or prognosis.  This was seen to occur for a variety of reasons: the desire to prevent distress; that it was too difficult for the bearer of the bad news, or that the bearer of bad news lacked the relevant knowledge or skills to disclose the information.  Further challenges can also add complexity to disclosure, such as the inability of the adult to understand, a lack of sense of time on the part of the adult, and the possibility of conflicting views of the stakeholders involved (Tuffrey-Winje et al., 2013a).  It was recognised that adults have a right to know their diagnosis and prognosis, and that this knowledge helps the person cope and prepare for end-of-life. The need to involve adults was necessary if his/her last wishes were to be known and observed (Tuffney-Wijne, 2003; Tuffney-Wijne et al., 2007b).

Rights and Choices

In addition to the right to know and make decisions, the right to choose the location of death is also important for adults with ID. The findings reported by a Canadian study suggested that more collaborative work between disability and end-of-life services, in order to provide inclusive end-of-life care, was central to the achievement of success in these services (Steinstra et al., 2012).  The issue of choice of location at end-of-life is fragile and changeable; it has been noted that choices made were not always available or appropriate when end-of-life eventually occurred (Todd, 2004; Tuffrey-Wijne, 2007a).  However, when asked directly, adults with ID stated clearly that family relationships, familiar environments and people were consistently important to them (Thompson, 2002).

Little is written about the social implications of end-of-life within the ID community, and the impact that end-of-life has on a social network (Tuffrey-Wijne et al., 2007b).  Connections and networks, whether with family, friends or fellow residents, are immensely important for adults with ID.  The necessity to maintain those connections, provide support and facilitate understanding, was demonstrated as being significant.

  1. Spiritual

The absence of specific references in the literature to the spiritual needs of adults was apparent.  Little evidence was found that healthcare professionals who cared for adults with ID talked about death and dying (Wise et al., 2013).  The challenges for staff when discussing issues such as final wishes, ritual and remembrance, were noted as being complex and required healthcare professionals to have specific training (Dunkley and Sales, 2014).  Botsford (2004) noted the exclusion of adults with ID from supportive rituals relating to end-of-life, and suggests that these rituals can be therapeutic and promote understanding, and therefore where appropriate they should be explored and encouraged.


Adults with ID at end-of-life have many similar needs to the general population.  The need exists for good physical care, effective symptom management and clear communication.  In addition, the presence of family and healthcare professionals who can provide emotional and spiritual support, ensures that adults with ID can meet their end-of-life goals.  The specific challenges that can occur including those relating to capacity, lack of choice of location of care and lack of disclosure can be challenging, but these needs are not exclusive to this community.

If the principles of palliative and person-centred care are carried through to end-of-life, the physical, emotional, social and spiritual needs of adults with ID can be met, thus providing adults with dignity and compassion at end-of-life, and ensuring that a ‘good death’ is achieved.


Botsford, A. (2004) Status of End of Life Care in Organizations Providing Services for Older People with a Developmental Disability, American Association on Intellectual & Developmental Disabilities, 109 (5), 421-428.

Clute, M.A. and Kobayashi, R. (2012) Looking within and reaching out: bereavement counsellor perceptions of grieving adults with ID, American Journal Of Hospice & Palliative Medicine, Vol.29(8), 583-590-

Dunkley, S. and Sales, R. (2014) The challenges of providing care for people with intellectual disabilities: a literature review, International Journal of Palliative Nursing, 20(6), 279-284.

Grossberg, R.I., Blackford, M., Friebert, S., Benore, E. and Reed, M.D. (2013) Direct care staff and parents/’legal guardians’ perspectives on end-of-life care in a long term care facility for medically fragile and intellectually disabled pediatric and young adult residents, Palliative & supportive care, Vol.11(4), 307-14.

Health Information and Quality Authority (2013) National Standards for Residential Services for Children and Adults with Disabilities, Dublin, HIQA.

Kirdendall, A.N. and Waldrop, D. (2013) Staff perspectives on the provision of end-of-life care in a community residence for older adults with developmental disabilities, Journal of Palliative Medicine, 16 (9), 1121-1124.

Li, S. and Ng, J. (2008) End-of-Life care:  nurses’ experiences in caring for dying patients with profound learning disabilities: a descriptive case study, Palliative Medicine, Vol.22(8), pp.949-955.

Stienstra, D., D’Aubin, A. and Derksen, J. (2012) Heightened vulnerabilities and better care for all: disability and end-of-life, Palliative and Supportive Care, 10, 17-26.

Todd, S. (2004) Death counts; the challenge of death and dying in learning disability services, Learning Disability Practice, 7(10), 12-15.

Todd, S. (2013) ‘Being there’: the experiences of staff in dealing with matters of dying and death in services for people with intellectual disabilities, Journal of Applied Research in Intellectual Disabilities, Vol.26(3), pp.215-230-

Thompson, D. (2002) “Well, We’ve All Got to Get Older Haven’t We?   Reflections of Older People with Intellectual Disabilities on Aging and Change, Journal of Gerontological Social Work, 37(3/4), 7-25.

Tuffrey-Wijne, I. (2003) The palliative care needs of people with intellectual disabilities:  a literature review, Palliative Medicine, 17, 55-62.

Tuffrey-Wijne, I., Bernal, J., Butler, G., Hollins, S. and Curfs (2007a) Using Nominal Group Technique to investigate the views of people with intellectual disability on end-of-life provision, Journal of Advanced Nursing, 58(1), 80-89.

Tuffrey-Wijne, I., Hogg, J. and Curfs, L. (2007b) End-of-Life and Palliative Care for People with Intellectual Disabilities Who have Cancer or Other Life-Limiting Illness:  A Review of the Literature and Available Resources, Journal of Applied Research in Intellectual Disabilities, 20, 331-344.

Tuffrey-Wijne, I. (2009) The preferred place of care for people who are dying, Learning Disability Practice, 12(6), 16-21.

Tuffrey-Wijne, I., Giatras, N., Butler, G., Cresswell, A., Manners, P. and Bernal, J. (2013) Developing Guidelines for Disclosure or Non-Disclosure of Bad News around life-limiting illness and Death to People with Intellectual Disabilities, Journal of Applied Research in Intellectual Disabilities, 26, 231-242.

Wagemans, A., Van Schrojenstein Lantman-de-Valk. H.M.J., Tuffrey-Wijne, I., Widdershoven, G. and Crufs, L. (2010) End-of-Life decisions: an important theme in the care for people with intellectual disabilities, Journal of Intellectual Disability Research, 54(6), 516-524.Wagemans, A., Van Schrojenstein Lantman-de-Valk. H.M.J., Proot, I.M., Metsemakers, J., Tuffrey-Wijne, I., and Crufs, L.M.G (2013a) The factors affecting end-of-life decision-making by physicians of patients with Intellectual Disability in the Netherlands: a qualitative study, Journal of Intellectual Disability Research, 57(4), 380-389.

Wagemans, A., Van Schrojenstein Lantman-de-Valk. H.M.J.,  Proot, I.M., Metsemakers, J., Tuffrey-Wijne, I., and Crufs, L.M.G (2013b) End-of-Life decisions for people with intellectual disabilities, an interview study with patient representatives, Palliative Medicine, 27(8), 765-771.

Wiese, M., Standcliffe, R.J., Balandin, S, Howarth, G. and Dew, A. (2012) End-of-Life care and dying: issues raised by staff supporting older people with intellectual disability in community living services, Journal of Applied Research in Intellectual Disabilities, 25, 571-583.

Wiese, M., Standcliffe, R.J., Dew, A., Balandin, S. and Howarth, G. (2013) What is talked about?  Community living staff experiences of talking with older people with intellectual disability about dying and death, Journal of Intellectual Disability Research, DOI: 10-1111/jir.12065,    1-12.

Further articles of interest

Irish Hospice Foundation (2013) Competence and Compassion, End-of-Life Care Map, Hospital Friendly Hospitals Programme (Accessed on line: (24th November 2014)).

National Federation of Voluntary Bodies (2007) Informing Families of their Child’s Disability, National Best Practice Guidelines, Consultation and Research Report (Accessed on line 8th July 2014)

Office of the Ombudsman (2014) A Good Death – A reflection on Ombudsman complaints about End-of-Life Care in Irish Hospitals, (Accessed on line: 29th June 2014 )).

United Nations (2006) UN convention on the rights of persons with disabilities. Geneva, United Nations.

Weafer, J. (2009) A Qualitative Study of Public Perceptions of End-of-Life Care. Dublin: The Irish Hospice Foundation.

Weafer, J., McCarthy, J. and Loughrey. M. (2009) Exploring Death and Dying: the views of the Irish public. Dublin: The Irish Hospice Foundation.

Author Bio

Niamh McEnerney is Practice Development Manager / CPC at LauraLynn, Ireland’s Children’s Hospice.

Geraldine McCabe details her experience of how the Irish education system is failing our children with Intellectual Disabilities. This article was originally a submission by Geraldine McCabe to the UN Day of General Discussion (DGD) on the right to education for persons with disabilities, held on 15 April 2015, at Palais des Nations, Geneva.

  • Geraldine McCabe writes to the United Nations about Inclusive Education.
  • Her daughter Shannon has Down Syndrome.
  • Geraldine sees difficulties for children with special needs in getting the opportunity to develop and contribute to society.
  • Shannon wasn’t allowed to take part in regular activities in school.


My experience relates to my daughter Shannon- Shannon has Down Syndrome and her experience highlights the difficulties children with special needs have in getting the opportunity to develop and contribute to society.

My experience with Shannon is that the school system is unable to see past her condition to the vast wealth of skills and qualities that she has to offer, and that her school has limited opportunities for her by:

  1. restricting the manner in which our daughter could best participate in her Junior Certificate;
  2. refusing to let her take part in Transition Year with her peers;
  3. allowing her only to attend school on a part time basis, thus in effect suspending her;
  4. giving her access to Physical Education for only the last five weeks of the school year;
  5. never allowing her to attend extra circular activities within the school environment;

Children with special needs have a lot to offer, but education and related organisations frequently do not give them the opportunity to either develop the skills, or to get the qualifications, that they need to succeed.

Supporting The Child

One of the main purposes of education is to prepare children for adult life. To me, this means providing the child with:

  • the opportunities to get qualifications they need to succeed
  • the opportunities to develop and expand on the skills and qualities

that they need to succeed

  • the belief that they can make a contribution to society
  • the motivation to make a contribution to society

Providing the child with the opportunities to get the qualifications they need to succeed

A child may have a condition, but they should not be defined by that condition. They have so much to offer and this must be recognised. Frequently their condition, which is one aspect of them, eclipses everything and they do not get the opportunities to study/train for particular qualifications or they do not get the support they need to achieve these qualifications.

Unfortunately, factors such as the cost of providing these supports dictate the decisions a school will make when offering education to children with special needs. The child can be the casualty of this, when they do not get the opportunities that they need, to get the qualifications that they need, to meet their career goals.

Providing the child with the opportunities to develop and expand on the skills and qualities that they need to succeed

As mentioned, children with special needs are defined by the conditions that dictate that  they have special needs. These children can tend to be overlooked in education and training and may not get the opportunities needed to reach their potential. Children with special needs are like all children. They have strengths – these strengths need to be built on and celebrated. The child needs to be defined in terms of their strengths. Often it is not the case.

The child will have weaknesses. Schools need to take note of these weaknesses and rather than treat weaknesses as something negative, schools need to focus on weaknesses as opportunities for development. There may be factors that may work to threaten a child’s development. Identifying these factors is a positive thing but in the schools and training systems, staff can tend to use these potential threats as an excuse to give up. This has certainly been my experience. These factors need to be seen as barriers to development.

But like many barriers in life, there are ways to overcome them. Barriers should not be used as an excuse for giving up. Unfortunately my experience is that they do.

Providing the child with the belief that they can make a contribution to society

Every child has so much potential. However, many professionals in education do not see past the child’s condition, whatever it might be. The child must have belief in themselves. Their self-belief needs to be nourished, and they must be helped to realise that they have so much to offer. This self-belief is a very fragile and vulnerable thing. Staff in education play an important part in making sure that this seed of self belief is nourished, and that the child sees that he or she has a lot to offer.

Providing the child with the motivation to make a contribution to society

Following from the previous comment, the child needs to believe that he or she can succeed. Children can, if they are given the belief and faith. The school must have faith in the child. If it doesn’t, the child will not. Unfortunately, this was the case with my daughter. She has had countless barriers placed in front of her. Countless professionals in the education system have written her off and it is an ongoing struggle to offset the damage caused by this.

Observations on the Southern Irish Education System

In addition, I would like to make the following points about the infrastructure/system behind all this:

  1. There are many supporting organisations whose overwhelming concern is self-interest
  2. I would question the value for money benefit of these organisations
  3. The complaints/advocacy system does not work
  4. The system of support has ground to a halt in red tape
  5. The financial and emotional cost of advocating for your child is overwhelming

There are many supporting organisations whose overwhelming concern is self-interest, and there is no accountability or transparency from within the state system.

Indeed it appears that the Irish state are prepared to spend a huge amount of resources to make sure that a wrong continues to be a wrong rather than reviewing and amending  systemic failures within in the system. This of course ensures that civil servants will continue to be kept employed within a dysfunctional system, and that voices like my daughter’s will continue to be ignored and disregarded. After all, who really cares about the voice of a person with special needs, when it comes to their education? Inclusion is working after all!!!!

I do note that there are organisations set up to support children with special needs, but due to the nature of their funding, these organisations are more concerned with using their resources to get continued funding. There is no stability in this sector. Staff are recruited on short-term contracts, and there is no continuity. This has a very adverse knock-on effect on the quality of service delivered.

I would question the value for money benefit of these organisations

Vast amounts of money seem to be spent on services, but none of these resources seem to cascade down to the service users. Service users need career advice. They need to access training. They need to be listened to, and they need to be assisted to believe that they have a lot to offer. This does not happen.

The complaints/advocacy system does not work

I have tried to address deficits in the delivery of services, and it is very clear to me that the systems do not work. They are weighted in favour of the system, and the people in the system know how to use the system to fend off complaints. I believe that the only way forward is to streamline the system of educational supports, and simplify pathways leading to the related supports, to foster an individual pupil-centred approach.

However, my experience tells me that this approach will not take place in my lifetime and for children like my daughter, the failure of the education system has defined her – instead of being a meaningful member of her community, she is condemned to always being viewed as an outsider, with no currency value.

The system of support has ground to a halt in red tape

Parents wishing to make a complaint are made to jump through administrative hoops. Staff use jargon, procedure and avoidance of responsibility to stop or slow down the complaints process.

The emotional cost of advocating for your child is overwhelming

When a parent makes a complaint, he or she is fighting a system, and can be overwhelmed by the sheer size and scale of the system. It’s a case of David versus Goliath, but unlike this tale, it is the gargantuan system that inevitably wins. Parents are eventually worn down from fighting the system, and make a pragmatic decision to give up.


Schools and training organisations have a pivotal role in ensuring that children are prepared for adult life. This means we must provide children with the opportunities to get qualifications, to develop and expand on the skills and qualities that they need to succeed, and the belief and motivation to make a contribution to society.

Also, we need a re-pointing of these organisations’ direction and motivation, to place the student at the centre of their priorities, and improve value for money. We must overhaul or replace the complaints/advocacy system, and remove the bureaucracy and red tape surrounding support systems. The financial and emotional cost of advocating for your child is overwhelming for parents, and in this regard, schools ‘could do better’. A lot better.

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’.

Kate Butler’s forthright blog seeks to raise awareness of issues concerning people with disabilities…

Kate Butler is a keen writer who wants to get the views of people with Intellectual Disability out into the public world. Here are some of her thoughts from her blog. She is also active on social media!

Reading Frontline, it seems to me that it is doing exactly the kind of work that I do, which is to get the views of people with Intellectual Disability out into the public domain wherever possible.

Please feel free to have a look at my blog – I am planning on doing more, so this will hopefully help to keep you informed.

Here are two posts from earlier this year that are specifically ID-related:

I hope you enjoy and benefit from reading, and feel free to share via the Twitter, Facebook and email links on each of the articles.

Author Bio

Kate Butler has been a features writer for 16 years, writing for a number of Irish titles, but mostly for the Sunday Times. She is also a practising barrister and board member of Inclusion Ireland.

by Cormac Cahill

The lads meet a minister
Focusing on Inclucion Ireland’s AGM and Aras Attracta.
Other topics include their Spring/Summer training calendar, the Fool me Once petition, Connect family network, the annual report and the changing places Ireland campaign.
RTE news covering the Inclusion AGMAGM ‘Áras Attracta – Four Months On’

Inclusion Ireland hosted their AGM ‘Áras Attracta – Four Months On’ at the Spencer Hotel in Dublin on Saturday, April 11 and the event was widely covered in the national media over the weekend.

The RTÉ Prime Time Investigations Unit report ‘Inside Bungalow 3’ concerning the HSE-run care home Áras Attracta in Swinford, Co Mayo was broadcast last December and made for disturbing viewing. The report showed evidence of force-feeding, slapping, kicking, physical restraint and shouting at residents.

In the aftermath, the HSE appointed Dr Kevin McCoy, a consultant and former member of the Commission to Inquire into Child Abuse, to lead a review of services at Áras Attracta generally.

And following on from Inclusion Ireland’s recommendation, the HSE also appointed Leigh Gath to the position of Confidential Recipient for whistleblowers, staff and residents to safeguard allegations of abuse, negligence or other mistreatment in HSE-funded services.

Both Dr McCoy and Ms Gath were guest speakers at Inclusion Ireland’s AGM.

Sheila Ryan, whose sister Mary Garvan was featured in the Prime Time ‘Inside Bungalow 3’ broadcast last December, also spoke at the event.

Other speakers included Inclusion Ireland CEO Mr Paddy Connolly, Inclusion Ireland Chairperson Mr Tom Healy, parent Mr Eamonn Tierney and Inclusion Ireland self-advocates Mr Adrian Noonan and Ms Phil Davy.

Spring and Summer Training Calendar

Inclusion Ireland’s popular training calendar is returning for the Spring and Summer period and will be taking in Dublin, Athlone, Galway, Limerick and Cork.

The calendar will look at popular subjects such as Making a Will, Medical Decisions, HIQA Standards, Post-School options and Assisted Decision-Making.

As always training can be organised for individual groups in your locality and enquiries can be made through Sarah Lennon on (01) 8559891 or

Fool Me Once Petition

Inclusion Ireland chose April Fool’s Day to draw attention to our long-running campaign to reform and replace the Lunacy Act 1871 enacted in Victorian Ireland to protect and manage the estate of Lunatics.

Despite successive government promises this law has never been reformed. It is the law that allows for Ward of Court applications. The Government introduced the Assisted Decision Making (Capacity) Bill in 2013, and Inclusion Ireland was concerned that it may not progress in advance of next year’s General Election.

Inclusion Ireland partnered with a number of organisations to draw attention to the fact that the Lunacy Act can potentially affect anyone with partners working with older persons, Alzheimer’s, Acquired Brain Injury and physical disabilities.

Inclusion Ireland organised a petition which drew over 2,000 signatures in three weeks.

Copies of this petition were handed over to Aodhán Ó Ríordáin TD Minister of State at the Department of Justice and Equality, the Department responsible for the Bill. Minister Ó Ríordáin met members of Inclusion Ireland’s self advocacy committee in Leinster House to receive the petition.

Inclusion Ireland with the Irish Council for Civil Liberties and other partners then met with the Oireachtas Sub-Committee on Human Rights and Equality and presented them with a copy of the Petition.

This sub-committee is concerned with Ireland’s ratification on the UN Convention on the Rights of Persons with Disabilities. We were pleased to hear that the committee expected the Assisted Decision Making Bill to progress in May 2015.

Connect Family NetworkConnect Family Network

Inclusion Ireland, Down Syndrome Ireland and Irish Autism Action are three national organisations that will be working together on the Connect Family Network.

There are many parent and family disability support groups that are doing good work in Ireland – but connecting with others to share concerns, keep informed and have your voice heard can prove challenging.

Parents and advocates often feel isolated, overwhelmed and not listened to.

Over the coming months and years, the Connect Family Network will endeavour to bring about greater participation of persons with a disability and their family members in the design and delivery of disability services and supports.

Research has shown that service and policy development is much more effective when the people who use services are involved from the outset.

The Connect Family Network will not replace any organisation, but will aim to enable a coherent and combined family voice to be heard by service providers and policy makers.

Annual Report graphicInclusion Ireland Annual Report

Inclusion Ireland has published their annual report for 2014 which contains information on Families, Self-Advocacy and Monitoring Policy, Law and Practice.

The edition also contains information on how Inclusion Ireland supports persons with disabilities and families, comprehensive Training section and lists our achievements for 2014.

There is also an Inclusion Ireland 2014 infographic and the list of organisations that we have collaborated with over the 12-month period.

Changing Places

Inclusion Ireland is currently working on a Changing Places Ireland campaign that aims to introduce fully accessible toilets to public places such as shopping centres, libraries and sporting arenas around Ireland.

The campaign will have a stand at the Care and Mobility Show in the RDS on Wednesday 22nd April (12.00pm-7.30pm) and Thursday 23rd April (10-00am-4.00pm).

This offers the campaign a great opportunity because this is Ireland’s biggest event of its kind and is all about products and services for people with disabilities or people who need assistance with their mobility.

The campaign working group also held very a constructive meeting with Minister of State Simon Harris and the OPW’s Assistant Principal Architect Angela Rolfe in Dail Eireann at the end of March. The OPW are currently carrying out appraisals of sites such as Dublin Castle, Áras an Uachtaráin, Glendalough Visitor Centre, the National Gallery and Clonmacnoise Heritage Centre to incorporate fully accessible changing places and toilets.

The group will also be meeting with PRM Access Officer Deirdre Delaney at the Dublin Airport Authority (DAA) on Tuesday, May 5th to discuss the possible instillation of a Changing Places facility there. Airports in the UK such as Stansted, Heathrow, George Best Airport, Newcastle and Manchester have already installed CP facilities.

Further Information

Cormac Cahill, Communications & Information Officer

Inclusion Ireland, Unit C 2, The Steelworks, Foley Street, Dublin 1

Office: 01-8559891  Mobile: 086 837 3394  Fax:  01-8559904

Mick Teehan introduces us to one college student who is realising inclusion and achievement in education.

Stephen Lyons is an active and popular student who has an intellectual disability in Tallaght.
Most peole take for granted that college is their right but for Stepehn and people like him things aren’t so easy.
Film-making is his passion and he hopes to learn as much as he can about the industry to improve his skills.
Stephen has a mentor called Lucy who supports him in class.

Meet Stephen Lyons, a student at the Institute of Technology Tallaght (ITT) who has travelled his own unique and difficult path towards achieving his goal of attending college and further developing his passion and skills in the area of Creative Digital Media. Stephen is highly regarded by his fellow students and lecturers alike and is described as being an active, contributing and popular student. However, his presence on campus is unfortunately the exception rather than the rule, due to the fact that Stephen has an intellectual disability. It is as a result of his diagnosis that Stephen has had to overcome a myriad of obstacles placed in his way, a fact that is not lost on his non-disabled peers, most of whom assume third level education to be a fundamental right afforded to all citizens.

At present in Ireland, less than 5% of individuals with a mild intellectual disability under the age of 35 have any type of formal educational qualification at all. Compare this with over 80% of the general population who, upon completion of their Leaving Certificate, will access either higher education or further education institutions. It has long been the case in this country that when individuals with an intellectual disability reach the age of 18, they are fast-tracked into a life within the confines of an increasingly overburdened health system. The fundamental right to access third level education, vocational training, adult education and lifelong education (as enshrined in Article 24 of the UN Convention on the Rights of Persons with Disabilities) is denied  to this already marginalised demographic.

It is internationally recognised  that lifelong learning is an essential requirement if the full participation and inclusion of people with intellectual disabilities is to be achieved. There is considerable international evidence to suggest that outcomes are greatly enhanced for people with intellectual disabilities who attend third level education. These can include significantly increased social networks, attaining paid & meaningful employment, enhanced self-esteem and self-identity, as well as the obvious improvements in an individual’s quality of life that the attainment of a formal qualification brings.

Upon leaving school at the age of 18, Stephen attended WALK’s Real Life Training Programme. This programme supports school leavers with intellectual disabilities to build their capacities within their local communities across the key areas of education, employment and personal development so that they may achieve their own self-determined objectives across these three domains. Real Life Training students such as Stephen are supported to develop and enhance their talents & opportunities for personal growth across a four-year individualised programme, which culminates in their transitioning out of the Health system and transferring either to paid employment or further education. The core elements of Stephen’s own transition plan was to develop his skills in the area of film making so that he can achieve his ultimate goal of securing employment in the film industry.

Stephen has long identified film-making as his passion and it is his dream to forge a career in this exciting but extremely competitive sector. He was supported in identifying a third level education as the obvious route towards enhancing his employment prospects, as well as developing his already considerable talents into genuine expertise. ITT’s Creative Digital Media Degree course appeared to have the ideal mix of practical and theoretical elements that would enable him to harness the knowledge and skills necessary to determine his own future.

Speaking of his time so far at ITT, Stephen says that he has really enjoyed meeting lots of new people who have been extremely welcoming and friendly. Regarding his upcoming enrolment on ITT’s Creative Digital Media course, Stephen adds “I’m hoping that I’ll learn some great new movie making skills. I hope to learn about green screen techniques and stuff like that as well as learning more about editing and sound so that I can use these skills to develop my movies”. Stephen adds that next semester he will be joining the drama society in ITT – he’s hoping to develop even more friendships through his involvement in this aspect of campus life.

WALK (, based in Walkinstown, Dublin 12,  is  an innovative, forward-thinking organisation whose mission is to empower adults with intellectual disabilities to live meaningful and self-determined lives within their community. WALK have developed their own approach to service delivery through their PEER mentoring programme. Peer-mentored support ensures that students such as Stephen can be viewed as pioneers that raise expectations, smash preconceptions and encourage other students with intellectual disabilities to achieve much more than was previously thought possible.

Sian Thompson from WALK, who supported both Stephen and his PEER mentor Lucy highlights the value of this model of support:

“When Stephen started at ITT he was nervous as he had no experience of higher education and wasn’t sure what to expect. Stephen’s nerves were quickly reduced by the excellent support he received from the outset from Lucy”. Sian adds that “Lucy supported Stephen on exactly what he needed to get to grips with the course (mainly note-taking), and supported Stephen to get to know other students in the class.

“Being a student from the College herself, other people from the course saw Lucy as a student, as opposed to a Support person. Lucy was also well versed in note-taking during lectures – so provided highly effective education-based supports too. Lucy’s support was invaluable in enabling Stephen to get to know and make friends in his class, to get involved in the broader life of the College, and to succeed in his first module within the College. Collectively this support has also enabled Stephen to gain in confidence, to build his skills to navigate the College campus, and the skills to follow his College timetable”.

Margaret Fingleton, Lecturer and Placement Coordinator at the Department of Humanities in ITT underlines the broader benefits of the programme:

“It was a very progressive piece of work to be involved with. As the placement supervisor for Social Care Students, I see this type of work an indication of where social care is heading and how important this type of learning is for the students. The piece of work that the student ( Lucy) undertook is underpinned by the social model of empowerment, inclusion and rights-based practice. The benefits were far-reaching, in that the college benefitted from having Stephen attend, students were open to supporting Stephen being part of the college community, staff were challenged in how best to support the initiative and the student that supported Stephen got the opportunity to be involved in a new and exciting piece of work”.

It is widely agreed that the fundamental right of people with intellectual disabilities to access third level education is a burning issue that can no longer be ignored. Both ITT and WALK share the same core values of developing inclusive, innovative services that ultimately support and empower individuals to be the best that they can be.  Both organisations recognise that the requirement for an inclusive model of Third Level education is gathering pace, and are working towards that.

Author Bio

Mick Teehan is Day Services Manager at WALK.

Judy Ryan interviewed Special Olympian Paul Cleary, Lord Mayor of Portarlington. Here’s his story…

Paul Cleary has won many medals in the Special Olympics.
He decided to enter the election for Lord Mayor of Portarlington.
After a lot of knocking on doors and getting his message out there, he was voted as Lord Mayor by a landslide.
He takes an active role as Lord Mayor and donated the money he has raised as Lord Mayor to the Special Olympics.

In July 2014, Portarlington Lions Club began a campaign to elect the town’s Lord Mayor. The election was linked to an innovative fundraising event in conjunction with eight separate clubs and groups in the town. Each club had to nominate a representative to run for election and Paul Cleary became the representative for Special Olympics Portarlington.

Paul, a member of Portarlington Special Olympics, is an accomplished athlete, having won a gold medal for swimming in the World Championship and three National gold medals for Bocce. Bocce is an Italian game. The basic principle of the sport is to roll a bocce ball closest to the target ball, which is called a pallina.

Paul explained how his election campaign for Lord Mayor was coordinated with his determined campaign team as they began the task of seeking votes. Each candidate was given fifty cards, to sell lines at €2 per line, with each line sold translating into a vote. Election posters were designed and erected prominently throughout the town. Social media was fully utilised. Paul and his team then began the task of calling to houses and pubs throughout the town over a two-week period. Eventually, they visited every pub in the town seeking votes – wearing out shoe leather and drinking endless cups of tea!

Following the gruelling campaign and a vote count that was overseen by the local Garda Sergeant, Paul was announced as the winner on July 10th in the Orchard Hotel. Paul won the contest by a landslide – 120 votes more than the second-placed candidate.  He received his chain of office and was honoured at a Cathaoirleach’s Reception for Mayor of Portarlington, friends and family in the Council Chambers, Portlaoise – thus beginning his work representing the people of Portarlington.

Paul has become a very visible and active Lord Mayor, representing the town with commitment and vigour. As Mayor Paul, some of his official duties included opening the Lions Club Fun Day; giving a very well received speech at the Local Annual charity Gala Ball held in the Heritage Hotel, Killenard; representing the town at the Ploughing Championships; acting as Grand Marshal at the Lions Club Annual Hunt and the St. Patrick’s Day Parade; and representing the office at the Older Persons Annual Christmas Party.

Paul loves his role as Mayor and his dedication and commitment is evident in the time and care he takes when representing the office. Although nearing the end of his tenure as Lord Mayor, Paul is supporting the club with their nominations for his successor.

Paul donated the money he raised during his term of office to the Special Olympics.

Lucy Blake and Darragh’s excellent adventure comes to a thrilling climax at Waterford’s dance spectacular…

Lucy and Darragh dancing
After weeks and weeks of hard training and worn out dance shoes, Darragh and Lucy enter the competition Strictly Let’s Dance. The night was a blur of great music and an even better atmosphere as they won the trophy for most improved dance couple.

Well, the big day had arrived, after 8 weeks of intensive dance training Darragh and I were ready.  The Strictly Let’s Dance Waterford in aid of The Solas Centre, South-East Cancer Foundation, was finally here. We had our routines practiced to perfection, our costumes bought and altered, our props sorted and the hair and make-up professionally done (well for me, not Darragh obviously!)

The lights went up, the music began and we made our grand entrance, the atmosphere in the hall was electric, the cheers and shouts from family and friends gave us a real boost! There were approximately 700 people in the audience that night, which was fantastic.

Darragh is a huge sports fan, so for our entrance routine we wore hurling jerseys, Darragh in Waterford colours and myself in Galway colours (borrowed from my husband Paul), Waterford had just beaten Galway in the league quarter finals that very afternoon so Darragh was pretending to beat me with a giant inflatable hammer, which went down very well with our Waterford audience!

The opening dance was great fun and really got the crowd going, we all danced to ‘I’m Sexy & I know it’ the audience got a great kick out of it with us all shaking our stuff and wiggling our backsides around!

Our own individual dance was to “You ain’t never had a friend like me” from Aladdin, for which we were dressed as Aladdin and Princess Jasmine. Our routine went really well, the audience and the judges loved it. We got very positive feedback from the judges and scored 9-9-10, so we were over the moon with that and thrilled that all our hard work had paid off. We then performed in our group dance to Glenn Miller “In The Mood” which we really enjoyed too, although there was a slight blip as the music started before we were all on stage, but that didn’t phase Darragh one bit, like a true professional he just took my hand and kept on dancing.

The night went by in a blur of dancing, music, spotlights, costume changes and fun and we thoroughly enjoyed ourselves. We didn’t win unfortunately, but we were awarded with the trophy for The Most Improved Couple which we were delighted with.  The winning couple were brilliant; they were Sean Connolly and Ciara Grant who performed a fantastic high energy country routine.

We have really enjoyed the experience of Strictly Let’s Dance, hosted by Vesper Events and I have to say that I feel very lucky to have been partnered with Darragh; he is an absolute gentleman, a lovely person who is kind, genuine, and generous, he has a great sense of humour and is always the life and soul of the group. It goes without saying that he is a fantastic dancer and I am delighted that I got to dance with such an amazing partner. He said he found it tiring at times but that didn’t stop him giving it his all and keeping up with the rigorous training schedule and complicated steps. I will miss training with Darragh as I feel we have become great friends over the past few weeks and I know that we will definitely stay in contact, as we will with many of the new friends that we have made during Strictly. In fact we’re meeting up with all the dancers for a meal this Saturday night. We had great support from Darragh’s family who helped us out with props, costumes, fundraising and also the use of their sitting room for dance practice!

Overall participating in Strictly was a great and unforgettable experience and we are delighted to say that the event has raised over €62,000 for The Solas Centre, a fantastic facility open to all cancer patients and their families free of charge in the South-East. Many of the Solas staff and volunteers gave up not only their whole weekend, but many days and nights previously preparing for and working towards the event and their support was greatly appreciated by us and all the dancers.

The Solas Centre is the finest cancer support building in the country and the people of the South East can be proud in the knowledge that this is due to their support and generosity. Without them, the Solas Centre would not be here.

We aim to provide the best possible cancer support services to the people of the South East of Ireland. With the counselling, relaxation therapies and group support services on offer at the Solas Centre we endeavour to provide cancer patients, their families and carers with a safe place; a place to talk things over, to relax and express emotions.